Hello and welcome!

[Lianna]

Hello!

It's Lianna Marie and I would like to extend a big warm welcome to everyone!

This new forum is a place where you can come on the Internet and interact with other people.

You can ask questions about Parkinson's... give your own answers or advice to others people's questions... or you can share your personal stories, thoughts and comments, and make friends with people from around the world.

Maybe you have just been diagnosed and you don't know what is going on in your life, or what to expect. You have a million questions running through your head you would like answers to.

Maybe you've had PD for a while, and are sitting alone at your computer, wishing you had someone to talk to.

Or maybe you are caring for someone with PD, or have a loved one with this disease and need some advice.

Whatever your situation, this new Forum can help.

It will be a place where people with PD, family,friends, and caregivers can get useful advice, friendship and support.

Whether you are from the US, the UK, Australia, New Zealand, Ireland, India, Japan, or Zambia (yes, people from all of these countries have
bought my book!), you will be able to access this forum any time of the day or night.

Even if it's 2:00 AM, you can always go and connect with others.

Remember, it may be the middle of the night where you are, but somewhere else it my be the middle of the day and there could be a person looking to chat just like you!

It is my sincere hope that you will come and spend some time here on the forum and be blessed because you did.

God Bless,

Lianna Marie :)

[YumaGranpa]

Thanks Lianna Marie for all you have done for the Parkinson's community. Your books have been very rewarding and I consult them weekly. I was told I had PD in Nov. or 2005 but I honestly believe I had it long before that. I had DBS done in Oct. 2006 and my tremors are for the most part under control. I have really bad off times with dystonia. I had to take retirement from my radio news reporter job of 22.5 years because of the stress.
I look forward to interacting with others here on the site. Thanks again...Greg Gardner;)

[Lianna]

Hey Greg,

Welcome to the forum! Nice to hear from you! I really look forward to having you on the forum.

Thanks and Take Care,

Lianna Marie:)

[SBSooz]

Thank you so much, Lianna, for making this website available----I look forward to using it and sharing it with others in the P.D. community.
I'll check in later, but need to go and fix some dinner now---I just returned from a sunset walk to the beach and am famished. I am a big believer in using exercise as a tool to slow down the progression of this disease.
SBSooz

[dansgram]

Hi Everyone,

My name is Jan and I was diagnosed with PD about 2 years ago. Mine is hereditary as my Mom also has it and so did one of her brothers. I take medication on a daily basis that keeps the tremors under control but I do have trouble with my balance and my handwriting which has always been good is terrible. I retired from my job with Nestle about 9 years ago and after taking some time off I decided to go back to work. I now work at a bank and really enjoy my job but it is getting more difficult to do so I have cut back to only two days a week. I'm looking forward to chatting with other people and finding out how they cope on a day to day basis. Thank you so much for starting this forum and giving everyone the opportunity to share our thoughts and our problems.

[shayne]

Hi, my name is Shayne and I was diagnosed with PD in 2005 at the age of 46. After CATS, MRI's, and more in search of something else, it was decided. I am doing ok except for the backing up alot, and with lots of jokes and laughter with my family and friends, I have kept my attitude up beat with little depression. I am starting to have some pretty down days so this site is just what I need to help me through, as I know a good attitude will be the only thing that will get me through. Thanks Lianna and all. Shayne Earp

[aideen]

Hello
I am aideen in Ireland (North) have had PD since 1995 and just gone thru DBS surgery at Frenchay in Bristol (uK) an amazing experience, 2 weeks down the road I had my first 'bad day' and haven' tbeen disllousined - yet. Two weeks ago I could not have sat at this computer and typed two words together at this time of the morning (6am) so here's to neurosurgeons and their teams, I feel lucky and privileged to be giving this opportunity (I know it's not for everyone) and I hope once I'm on my feet again, to do something worthwhile with the extra mileage I've been granted. Thank you Liana for all you have done, it has been encouraging receiving your emails over the years, and I will think of your Mum today :)

[hefty]

Hello all,
my name is chris hafler i live in south jersey i was dx in 1999 i am an electrican for a power company..interesting job for a pd person lol i participate in a study group at Robert Wood Johnson Hospital trying new meds.I am very thankful for this forum as i think it will help alot of people... thank you Lianna Marie for starting it.

[Bonnie]

Hello from Tucson Arizona,

I am excited about this forum as I have just found out about Lianna's efforts. My husband was just dx with P and I am his caregiver. I have lots to learn about everything and just want to say "Hi" to everyone.

Regards, Bonnie

[PortLee]

:) Hi folks,
My name is Lee and I have PD. I've had it for about 5 years or so. Since i diagnosed myself, I can't be sure. It all started with a fall where I twisted my knee pretty bad and I had to have a Left knee replacement. Then when I went to a nursing home for rehab, I fell a couple of more times. Several weeks later ( after I had gotten home) I noticed my voice was much softer rthan it had been previously and my writing was pinched and slanting upward. I had always been proud of my writing, since I was a nurse and everyone could read my notes without any problems. So I made an appt. with my primary care p hysician and told her that I suspected I had Parkinson's Disease and she agreed with me and sent me to a neurologist who after examing me and giivng me several tests & an MRI, confirmed my dx. So here I am, in a wheel chair because the P.D. had affected m y lower extremities and my balance. I have a little tremor in my hands but that's about it. i feel pretty good for the most part, just wish I could walk a l ittle better so I could go outside and plant flowers and help out aro und the house a litttle more. Thank you Lianna Marie for making this site possible for us all to come to. I love your books and refer to them often.'

God Bless,
Lee

[blamee]

Hello, my name is Sherry. I was diagnosed with PD 5 years ago. I noticed my handwriting had changed, and I was clumsy handling equipment at work. I am a registered nurse, specializing in Oncology and Bone Marrow Transplant.
I have been on disability for 2 years now. I also experienced tremors and hand cramping (still do), and it was interferring with my ability to do nursing tasks. I was having difficulty doing tasks I had been doing for years, 20 years to be exact.
I now have difficulty walking, and I lose my balance.
I am also being treated for RA, and I have a problem with my spine. I try to maintain a positive outlook. I enjoy reading, and knitting when I can. My hands cramp, so I have to stop quite a bit of the time, but I still go on.
I was diagnosed at the age of 51. I was diagnosed the day after my birthday.
I look forward to hearing from fellow PD'ers.
Best wishes to all.

[Carol Ann McCormack]

Hello all,
I was diagnosed with Parkinson's Disease on the
29th of June 2006 and I knew NOTHING about it !!!!! My Pharmacist gave me a book she had ordered for me ( she had suspected that that was what was wrong with me ) and I read it avidly, but it was quite depressing. Then I read what was in the Sinmet pack, and it was all terifying ! I realy thought that cancer would have been better, as I would have lived or died, but not have to live in this awfull state where you never knew what was going to happen next, and I am not afraid of dying.
However the hospital sent me to a psychiatrist and she helped me to look on the bright side ! ! ! So, last Sept. Oct. I took myself to China on an Irish conducted tour and had a wonderfull time ! ! ! Along with my other souveneers I bought myself some silk pyjamas and two sets of silk sheets, so I now lie in my bed feeling like a princes ! I also bought some pj's and sheets for a few of my P D friends, which were very wellcome.
You might be interested to know that as an Irish citazine ( sp?) we do not have to pay for our Medications when we have what is known as a 'long term illness' And I have two ! I have been an insulin dependant Diabetic for the last 33 years, I am now 66 ,so I have had diabetes for half my life. Is there any one out there who is in the same position as I ? I should really love to hear from you, please please please !
With best wishes to all, from Carol Ann.

[Carol Ann McCormack]

Hello all,
I was diagnosed with Parkinson's Disease on the
29th of June 2006 and I knew NOTHING about it !!!!! My Pharmacist gave me a book she had ordered for me ( she had suspected that that was what was wrong with me ) and I read it avidly, but it was quite depressing. Then I read what was in the Sinmet pack, and it was all terifying ! I realy thought that cancer would have been better, as I would have lived or died, but not have to live in this awfull state where you never knew what was going to happen next, and I am not afraid of dying.
However the hospital sent me to a psychiatrist and she helped me to look on the bright side ! ! ! So, last Sept. Oct. I took myself to China on an Irish conducted tour and had a wonderfull time ! ! ! Along with my other souveneers I bought myself some silk pyjamas and two sets of silk sheets, so I now lie in my bed feeling like a princes ! I also bought some pj's and sheets for a few of my P D friends, which were very wellcome.
You might be interested to know that as an Irish citazine ( sp?) we do not have to pay for our Medications when we have what is known as a 'long term illness' And I have two ! I have been an Insulin Dependant Diabetic for the last 33 years, I am now 66 ,so I have had diabetes for half my life. Is there any one out there who is in the same position as I ? I should really love to hear from you, please please please !
With best wishes to all, from Carol Ann.

[Orlan]

Hello friends,

This is Orlan from Upstate South Carolina. I reside here with my wife. We have 3 children, 2 sons and one daughter that all live nearby. We have 3 grandsons and 2 adopted granddaughters. I am retired now. I was diagnosed with PD in January 1996. I don't tremble.More later.

[Bellinghamster]

Thanks Lianna for this wonderful site and literature. My best friend/soul mate (aka: spouse) was diagnosed at age 38 with Parkinson's disease. He is now 60 so we have been on this ride for a long time. I recently had to place him in a long-term care facility because his physical and emotional needs are beyond my expertise and ability. I still work full time and will need to continue to do so for a few more years -- thank you Parkinson's! Douglas is in a wheelchair and requires assistance with eating, personal hygiene, bathing, getting in and out of bed, etc. We had home health aides for a while but after working a full day at my job and then coming home to take on another full time job I completely burned out! That wasn't doing me or Douglas any good so now he is in a very good place and is receiving the care he requires. I am adjusting to "single" life after 30 years of partnership and that is not an easy task. I grieved the loss of the man I married 30 years ago but I still grieve for my best friend after each visit. He is so frail and fragile and has aged beyond his 60 years. I have cried, cursed God and the medical professionals, the USMC (he is a Viet Nam veteran), and anyone or anything else I can think of. And yet here we are. It is what it is -- and I am so very thankful for every day that I get to visit the man of my dreams, my spouse, my bestest friend and soul mate. Douglas was and still is a gentle soul and heaven will just have to wait a little bit longer. We aren't ready to give up yet!!!!

Again, I appreciate your site and literature. I look forward to sharing information with others who are caregivers as well as those who have this illness. I'm not an expert but trust me, I have seen and done a lot about this illness -- and I will never stop working with anyone and everyone for a cure.

Take care, God Bless and peace to all of us!!!!!

Brigitte

[dansgram]

hi Lee

I have had PD for about 2 years. Mine started with tremors in my legs and a balance problem I also have a problem with my handwriting which I always took pride in. It sounds like we have some of the same symptoms. I'm not in a wheelchair but I do use a cane and have a hard time going up steps and getting out of chairs. I'm so afraid that I'm going to break something when I fall, which I seem to do quite often. Hang in there. It sounds like you have a good attitude.

Jan

[dlmarcoux]

Hello Lee: My name is Doris I also have PD I was diagnosed in May 2005, as I look back, I realize that my symptons were slowly coming on about 6 years before, also my husband was sent home from the hospital with hospice that was when my handwiting went to "hell in a hand basket," this was in
2002. Then I began to fall, not very often at first, but now quite often. I also wish I could walk out side in the summer, and just bend over and pull a weed or two. I do not to go crazy and weed the whole garden.

[bobct]

Hi Lianna,

Finally got to the site and it's wonderful. My name is Bob, I'm 56 and was diagnosed with PD two years ago. I have been having symptoms, bad handwriting, failing typing, walking funny, since 2001. My PD is more stiffness and less tremors, with a lot of loss of fine motor control on the left side (typing is a *****;) )

Fortunately I have an in-home office so I can continue working as if everything were fine. My PD is also the less common familial type. My father had PD as did his mother's sister and several others on that side of the family.

I'm not on any PD meds since I have great difficulty with the side effects. I'm actually experimenting with fava bean sprouts. Anyone have any experience with these? My results so far have been mixed with very limited effectiveness. However this summer I'm planting a whole garden full of fava beans!

Bob B.

[irish Lass]

Hello Lianne Marie

i was having a problen with my username and password but i finally remembered them. I love your forum and i love to read all the post that people with PD write about . Keep up the great work you are doing Lianne. How did you Moms birthday go mand how is she doing with her PD

Take Care

God Bless You Lianne

Palmer Alaska

[happy0514]

Thank you so much, Lianne, for this site. I've been reading all evening. My sister was diagnosed more than six years ago and your book gave us more information than any other source. She is doing well with her medications. Just being able to communicate with others who are experiencing the same symptoms, problems, etc. will be so helpful to all of us.
Thanks again.
Barbara

[tich]

Hi I am from Rockingham in Western Australia. I have only recently been diagnosed with Parkinsons (On Valentines Day). But I think I have had it for about 2 years or more but was ignoring it and hoping the tremmor would go away. I am sure I will have lots of questions to ask as the time goes by. Thank you Lianna Marie for starting this group and for your wonderful book it has been very helpful to me.

Tich

[ellenjane]

Hi, Lianna - Thanks so much for creating this forum! I know that it will be helpful to so many people. My father has advanced PD and I help care for him. (He lives nearby in an assisted living residence.) He was diagnosed 20 years ago at the age of 55. When he first started taking Sinemet, he took just two a day, now he takes 15. Everyone is amazed at how well he manages to do things. He is a fighter for sure! I'm always looking for ways to help him and I hope to learn of some news ways by using this fourm. So, thank you again for your many books on PD and for creating the forum for all of us affected by PD. - ellenjane

[MargieB]

[QUOTE=Bonnie;67]Hello from Tucson Arizona,

I am excited about this forum as I have just found out about Lianna's efforts. My husband was just dx with P and I am his caregiver. I have lots to learn about everything and just want to say "Hi" to everyone.


Dear Bonnie,
Hi right back to you Bonnie. Welcome to this wonderful forum. My husband was diagnosed with PD three years ago and I am still learning. I think learning about PD is an ongoing process that can't be taken in all at once. Each day seems to be different and each PD person is an individual.

One thing my husband and I found out is that the less stress there is the better the Parkinson's patient feels (as well as his/her spouse and other family members). I'm not a polyanna--I'm just saying that husbands and wives can greatly help each other by not paying attention to the unnecessary stresses of daily life and use that time to maybe do something enjoyable together...even if it is just sitting in the same room reading, watching tv, talking, etc.

Keep living life to the fullest the best way your husband can and relish the good times...for there are many if you pay attention.

Just because a partner or family member has PD does not mean they are not themselves. They are very much themselves...the same individual we fell in love with and want to share the rest of our lives with. Helping him/her when they need assistance but giving them the freedom to do things that they can do by themselves. I do so want to put these words right. I guess I'm trying to say keep on with your lives, keep loving one another, accept limitations, don't forget to smile, have hope and enjoy each other's company.

I'm excited about this forum too. My husband and I will be married 46 years in May. He is still my best friend, the love of my life and the person I most like to be with. Having this forum makes it possible to talk with other people who either have PD themselves or someone whom they are caring for, or a loved one. I can't thank Lianna enough for the tremendous gift she has given us.

So long for now Bonnie. It was nice 'talking' with you.

Margie

[Carlotta]

I was diagnosed with pd last May. I am 54, married with 2 children son 30 and daughter 24 who is getting married in Sept. I'm an administrative coordinator for Hospice of Cincinnati. I had posted a question about anxiety issues I have been having, but I don't know how to find any responses. Could someone help me.
Thanks

[heather]

see we have another new member

http://i10.photobucket.com/albums/a126/maesisaf/welc-1.gif

mema98

[Kanesonmalone]

Hi Lianna

Thanks so much for this forum. I check it everyday. My husband was diagnosed about 24 months ago and we are still in the stage of experimenting with different medications, Siminet, Mirapex, Amantadine, Azlect. He has had a reaction of one sort of another to all. He is now taking a very low dose of Requip and while it is not helping much, he does seem to be able to tolerate it. The doctor is increasing it slowly and we'll see what happens. I suppose at some point if the medications help, he may decide that the side effects are the lesser of two evils. I am learning alot on this forum. Can someone tell me what you mean when you talk about pegs and hoists that swing.

[heather]

Hi Kanesonmalone

my husband has had a peg for over12 months , his swallowing reflex is very limited and slow, which means he can easily choke,or fluid or food can get in to his lungs
This is one of the best links i have found
it explains what a peg is, and the reason's for having one

www.kumc.edu/hospital/huntingtons/tube.html ·

The swinging hoist,i think was me not explaining properly

my husband has to be hoisted in and out of bed, and if i forget his teatime medication , his whole body shakes so bad, the sling and him looks like he is on a swing hope that makes more seance

[Pauline]

Hi Leanna thank you setting this site up it is nice to have some whear to go and talk to people who are going through the same thing I was diagnosed with PD in Jan, and feeling very alone now i have a place to come to thank you Pauline:)

[harding51]

I am 51 years old and was diagnosed with PD in Oct 2007. I have had tremors in my left hand for about 3 years. I am an accounts receivable and billing clerk and I have noticed that my typing has slowed down very much. I was due to have torn rotator cuff surgery on my left arm last October. When my surgeon first examined me - he told me the tremors were not normal and to go to a neuorologist which I did and he confirmed it was pd. I just went for a follow up last week and he told me he wants me to start taking meds. At this time I am refusing because I feel that it is still just cosmetic. It seems that once you all start taking meds you have to tke more and more and then you hve more side affects. Is it worth it to take them early on? What happens if i don't?

[redeagle]

Hi Lianne
My husband has PD and was diagnosed in June of 2007. I have a lot to say since last year seems an eternity. Maybe my experiences can help someone. It is about midnight now and I still have some paper work to finish, but I will be back as soon as I can. Thank you for your book and for this forum. I am sure it will be an answer to a lot of my prayers. I have read all of the stories I could find on this website tonight and most of them if not all of them, sounded so familiar.
Thank you everyone for sharing this part of your life. We do need each other.

[heather]

Hi Lianne
My husband has PD and was diagnosed in June of 2007. I have a lot to say since last year seems an eternity. Maybe my experiences can help someone. It is about midnight now and I still have some paper work to finish, but I will be back as soon as I can. Thank you for your book and for this forum. I am sure it will be an answer to a lot of my prayers. I have read all of the stories I could find on this website tonight and most of them if not all of them, sounded so familiar.
Thank you everyone for sharing this part of your life. We do need each other.
Hi redeagle
look forward to reading your post's,we sure do need each other
God bless and take care

[marshalldillon]

I am a 61 year old man who was diagnosed with parkinson's disease in 2001 and boy did it hit me hard that I had a nervous breakdown and felt that it was my last days on earth. After seeing the doctor the second time he told me he could keep me healthy for quite some time. I don't have the shakes and hope i don't get them, right now my problem is slowest of movement early in the morning till I get my med in my system. Then I don't feel to bad, but a lot of the time i have down time during the day and it seem that if i take a rest i can continue on the rest of the day. Due to this disease i had to retire from my job because i was always being pressured in thing i could not handle due to stress on the job. Don't miss getting up in the morning to go to work but due miss the fellows i worked with and the fellowship we shared

[heather]

marshalldillon
welcome look forward to your post's

[beaderpd]

Hi,
Thanks for the website. I am from southern Indiana, and go to the University of Cincinnati for treatment. Diagnosed in 2000. was a terrible day in my life. I sat for two years, then finally decided I had to do something. So I joined a support group, helped start an exercise class, and became an active advocate. I go to Washington once a year to meet with our senators and reps. and share with them our strugles with the disease, and the need for federal funding. I am looking forward to meeting everyone, because I have had some terrible problems lately with hallucinations.
Thanks for this forum

Linda Armstrong

[susan wheatley]

my name is susan i have had pd for 5 years.

[heather]

Hi Susan
http://i10.photobucket.com/albums/a126/maesisaf/welcometogroup-lmg2.gif
pop in and say hello

[JENNY]

Hello, My Name Is Jenny, I Am A Young At Heart Widow, 71 In Years, But Sure Don't Feel Or Act It.
I Started Pd With A Tremble In My Left Arm, Then Went To My Leg. Some Days It Is Uncontrollable, Very Frustrating. Other Than That Curse, I Am Fine.
Will Anyone Write Me If They Have A Bad Tremble In One Side, And God Forbid If Its In 2 Sides. Mine Is In The Left Side Thank God.
I Live In Nova Scotia, Canada.
I Would Love To Hear From Some Of My Pd Family With Info About Themselves.
God Bless You All. Jenny.

[Pauline]

Hi Jenny Welcome my name is Pauline and I have PD I think you will like this forum there are a lot of nice people here and they all know what your going through keep smiling :):):)Pauline

[kbaird]

Hi, my name is Kirsty and I was diagnosed with Parkinson's nine years ago. I am doing remarkably well - with the help of various medications! Writing for me had become so difficult, but not any more as I find that Sinemet is so helpful. As long as I am on an "on" time, I can do almost everything. I have found that changing medications - Permax to Mirapex - has been a bit of a challenge as I found Permax more effective, but with the help of my neurologist I have altered the times and frequency of my meds and I feel more or less in control. I do not adhere to a strict timetable with my meds as some days I need more help at certain times than on other days i.e. when I go to my Japanese class I take an extra half tablet of Sinemet to ensure that I can write. I have just begun to read the Forum and wonder whether Lee is on any medications to help aleviate her symptoms? K.

[kbaird]

I was diagnosed with pd last May. I am 54, married with 2 children son 30 and daughter 24 who is getting married in Sept. I'm an administrative coordinator for Hospice of Cincinnati. I had posted a question about anxiety issues I have been having, but I don't know how to find any responses. Could someone help me.
Thanks
Hi Carlotta, My neurologist has prescribed Ativan for me which I take just occasionally - when I know that I am going to find myself stressed or anxious. It makes a big difference! Best wishes from, Kirsty.

[susan wheatley]

hello heather thank you for replying to my post hope you and your husband are well.

[heather]

Hi Susan
Thank you, we are both on a good day
Have you had a lovely sunny day as well.

[susan wheatley]

hi heather sorry i did not reply yesterday, when was your husband diagnosed and which medication is he on at present i am currenty on three different ones an am managing quite well i am still at work, i am a community healthcare assistant and have great support from my colleauges which does help.

[heather]

Hi Susan
Jim was diagnosed approx 12 years ago,but had it for about 5 years or more we think before, his illness only mimics PD,he has Olivopontocerebellar degeneration
he is on Sinemet plus2 3xday Tegretol Retard for depression and hallucination's, at night and Lofepramine 70 twice day for depression
i have good support as well which helps

[Betty McConnell]

Hello, I am Betty and I have Parkinsons. I dont know a lot about parkinsons but I am reading a lot from the book my husband got from Lianne. I dont know anything about stages or anything like that. I take my seminet and other meds my doctor has prescribed. They do help, the latest one has helped even more but it makes me very sleepy. It has stopped a lot of my shakes and twitches which I am pleased about. So I guess I must be in the early stages of Parkinsons. I dont know. I do know that I do get depressed but then I get out of that. I have also found that I cant travel like I used to. If I go on a journey that last for more than 2 hours I cannot cope the next day. Is this normal? For that matter, am I normal for someone with Parkinsons? I hope some can tell me.

[susan wheatley]

hi betty nice to meet you, how long have you had pd, i was diagnosed 5yrs ago the consultant told me it was a mild form and so far i think he was right i am currently on madapar (levadopa) and neupro patches, also on selegaline, pd is different for everyone some symptoms are similar but not the same you just have to take each day as it comes and keep smiling remember your not on your own speak to you soon, susan.:):):)

[heather]

Hi Betty Welcome
Hope you are having a good day
I am a carer for my husband Jim for over12 years , he has a illness that mimics PD,
like Susan said everyone is different,
Fatigue is one of the most common symptom
there is a lot of very good first hand information on this site
so i'm sure you will theanswere to most if not all your questions
Take care

[ltd-addition]

I was diagnosed with pd last May. I am 54, married with 2 children son 30 and daughter 24 who is getting married in Sept. I'm an administrative coordinator for Hospice of Cincinnati. I had posted a question about anxiety issues I have been having, but I don't know how to find any responses. Could someone help me.
Thanks

HI Im 6yrs diagnosed with young onset Parkers
Im 45yRS a professional
I act like I'm a "spring Gazelle"

Look on left side near the top of forum
user cp faq members list calender etc
CLICK ON FAQ THIS ANSWERS YOUR QUESTIONS
THEN FOR SOME fun
click on user cp
edit options
scroll down to thread display options
click on 3rd box leaving a tick SHOW IMAGES (this is so you can see images/photos)
scroll down and click on save changes

I HOPE THIS HELPS
Im ltd-addition in the UK

[heather]

HI Im 6yrs diagnosed with young onset Parkers
Im 45yRS a professional
I act like I'm a "spring Gazelle"

Look on left side near the top of forum
user cp faq members list calender etc
CLICK ON FAQ THIS ANSWERS YOUR QUESTIONS
THEN FOR SOME fun
click on user cp
edit options
scroll down to thread display options
click on 3rd box leaving a tick SHOW IMAGES (this is so you can see images/photos)
scroll down and click on save changes

I HOPE THIS HELPS
Im ltd-addition in the UK

Iml ooking for your pictures ltd-addition,com on post some :D

[heather]

Hello, I am Betty and I have Parkinsons. I dont know a lot about parkinsons but I am reading a lot from the book my husband got from Lianne. I dont know anything about stages or anything like that. I take my seminet and other meds my doctor has prescribed. They do help, the latest one has helped even more but it makes me very sleepy. It has stopped a lot of my shakes and twitches which I am pleased about. So I guess I must be in the early stages of Parkinsons. I dont know. I do know that I do get depressed but then I get out of that. I have also found that I cant travel like I used to. If I go on a journey that last for more than 2 hours I cannot cope the next day. Is this normal? For that matter, am I normal for someone with Parkinsons? I hope some can tell me.

Hi Betty
Lianne book became my bible
now i come on hear,it's like winning the lottery

[Theresa]

Hello my name is Theresa and my father was diagnosed with Parkinson's about a year ago. He does not have tremors, his symptoms are that he is extremely dizzy and gets disoriented and frustrated easily. His doctor prescribed carbidopa (25mg) and levadopa (100 mg), however my family and I have not seen much improvement. If there anyone that has dizziness and has ANY suggestions on medications or any other remedies to help us we would forever be grateful, it is very hard to see my father this way and just want to improve his quality of life to be able to walk without falling. God Bless!

[susan wheatley]

hi theresa, welcome to the forum i have pd and have some dizziness but my pd nurse does,nt seem to concerned i have had my blood pressure checked its ok so i just grin and bear it for now iam also on levadopa and a combination of other drugs and like your dad dont have any tremor and they seem to work for me i was diagnosed 5yrs ago when i was 43 thankfully it hasnt progressed to fast pd treats everyone who has it differently some symptoms are similar but not the same, you might need to see your pd nurse if you have one your dad might need a different combination of meds its a case of trial and error dont worry to much speak to you soon susan.

[suzie Q]

Hi Teresa

I have problems being dizzy and light headed.It is my blood pressor I have very low.now I know i be carefull when getting up from sitting etc


Hope you find some help for your Dad

Sue

[heather]

http://i10.photobucket.com/albums/a126/maesisaf/sit%20pictures%20not%20used/5c05dd89.jpg

[Paulie]

Thanks Liannafor all your dedicated work. It is very much appreciated.

My name is Paulie. I am from British Columbia Canada. I was diagnoised with PD in 1992. I have been very fortunate that it has been slow progression, but it seems to be picking up the pace a bit. I live at home with my husband and 2 of our 4 children. I have recently become a Grandma for the first time and I am throughly enjoying it.

I am looking forward to chatting with the members.

Cheers Paulie

[mappergal]

My name is Liz and I am 47, I was diagnosed 1.5 years ago. I am going to go on a disability retirement next month as I was recently given a layoff notice. Although I could probably have worked longer, finding a new job with Parkinson's is daunting as I have great difficulties filling out applications. The way I look at it, at least I'll be able to enjoy my early retirement by going now. I am a single mom with a 16 year old daughter, Since I have worked all her life, I have never volunteered for anything at her school. Now I will be able to.:)

[susan wheatley]

hi mappergal, i am 48 with pd wasdiagnosed 5yrs ago, i am still at work at present with great support from my colleuges (excuse the spelling) what are your symptoms how does it affect you i have it down my r/side and am currently taking madapar neupro patches and selegiline, walking is becoming a problem but my dexterity is improved with the madapar so i can still do my job got to go speak to you soon susan.

[heather]

Thanks Liannafor all your dedicated work. It is very much appreciated.

My name is Paulie. I am from British Columbia Canada. I was diagnoised with PD in 1992. I have been very fortunate that it has been slow progression, but it seems to be picking up the pace a bit. I live at home with my husband and 2 of our 4 children. I have recently become a Grandma for the first time and I am throughly enjoying it.

I am looking forward to chatting with the members.

Cheers Paulie


http://i10.photobucket.com/albums/a126/maesisaf/sit%20pictures%20not%20used/pspbear2fivewelcomePauliecopy.jpg

[heather]

http://i10.photobucket.com/albums/a126/maesisaf/sit%20pictures%20not%20used/logo100827158D33mappergal.gif

[ltd-addition]

Hello everyone and a warm welcome to all new members.

I'm classed as a Senior member but am by no means old in years (contrary to popular believe hah ha )

Please post a Reply if you need assistance. The forum has different categories which you will see as you navigate through. Don't worry if your not sure where to ask any questions or if your in the correct section.

It is very worth your while to view the Help page , FAQ, User CP to help to get you started with some knowledge of how to use the forum. (top page of forum when you are looking at what should you click on )

I'm sad that you have the experience or knowledge of someone with Parker's, either by being diagnosed or as a carer or know someone with Parker's. However I'm full of joy that you found this forum, since you couldn't get a more funnier, talented & knowledgeable bunch of "Shakers & Movers" however I like to shimmy ha ha

May your God bless you & keep you all safe

[MargieB]

Hello my name is Theresa and my father was diagnosed with Parkinson's about a year ago. He does not have tremors, his symptoms are that he is extremely dizzy and gets disoriented and frustrated easily. His doctor prescribed carbidopa (25mg) and levadopa (100 mg), however my family and I have not seen much improvement. If there anyone that has dizziness and has ANY suggestions on medications or any other remedies to help us we would forever be grateful, it is very hard to see my father this way and just want to improve his quality of life to be able to walk without falling. God Bless!

Hi Theresa, My name is Margie and my husband Tony was diagnosed with PD four years ago now. After about a year in to PD he started to get very bad dizzy spells when he stood up.. Even when he tried to lay down.

His doctors told him it was caused (in his case) by a fast drop in his blood pressure on getting up and trying to move/walk. They told him that after he got up from a sitting position, he should stand in place for a minute or so until the dizziness subsided. This permitted his blood pressure to even out and the dizziness went away. Whenever he didn't take that extra time to stand in one place after getting up from a sitting position, the dizziness came.

Also, I had mentioned that he got dizzy when lying down in bed. There again, it was his blood pressure dropping because he was changing positions. When he closed his eyes and took several deep breaths, the dizziness went away.

Tony also was on medication for high blood pressure before he was diagnosed with PD. When the neurologist started him on Sinemet and Requip there was no dizziness for a time. But what happened is that the Sinemet and Requip caused Tony's blood pressure to drop--plus taking the medication for high blood pressure--plus getting up and starting to walk right away instead of waiting awhile, etc. all resulted in dizziness and some times disorientation for my husband. He no longer is taking meds for high blood pressure. Thank God, now the dizzy spells are almost non-existent. I mention all this hoping it will be helpful to your father and you in some small way.

Call or next time when your father goes to his neurologist, tell him/her about these symptoms you father is suffering from. He/she might be able to give you some advice on how to help your father...or he might changer/alter your father's medication. Good luck. We hope your father will feel better very soon.

If you ever send a post to me and I don't answer, it is not because I don't want to. It is because I haven't seen it. I don't get to read everything each day and sometimes I just see a post written to me....a week or two after. Be patient with me...I'll catch up sooner or later. Thanks.

Margie :)

[Pauline]

Thanks Liannafor all your dedicated work. It is very much appreciated.

My name is Paulie. I am from British Columbia Canada. I was diagnoised with PD in 1992. I have been very fortunate that it has been slow progression, but it seems to be picking up the pace a bit. I live at home with my husband and 2 of our 4 children. I have recently become a Grandma for the first time and I am throughly enjoying it.

I am looking forward to chatting with the members.

Cheers Paulie
HI welcome Paulie
My name is Pauline and I was diagnosed in January and I live in Ontario Canada and I am a Grandmother of 2 and grand children are a great gift It is so much fun I think I make a better grandmother than I did a mother Mainly because I have more time to enjoy them hope to talk to you soon :):):)Pauline

[MargieB]

I was diagnosed with pd last May. I am 54, married with 2 children son 30 and daughter 24 who is getting married in Sept. I'm an administrative coordinator for Hospice of Cincinnati. I had posted a question about anxiety issues I have been having, but I don't know how to find any responses. Could someone help me.
Thanks



Hi Carlotta,

WELCOME! to this wonderful Forum. I would like to see if I can help you find responses. One way is to go to the top of any page. Look for the letters FAQ. Left click on these letters and you will be brought to a page that will most likely start you off to using the Forum. When you are on the FAQ page, scroll down just a little and you will see:


.User Maintenance
.General Forum Usage
.Reading and Posting Messages

You can left click on each of the above and they will each bring you to a place to clarify/instruct you. I think you'll find them useful.

Carlotta, you can also left click on any of the others near top of page like:

Help Page, User CP, FAQ, Member List (on this one you will see the names of all the members of the Forum. Some will be member's real name; some will be names they have given themselves on the Forum). You can go to any name, left click it and you'll be brought to a page with that persons name and maybe other information about them. Scroll down this page and you will see something like Read all the posts started by:
(the member's name) and Read all the threads started by:
(the member's name). Left click on either of the above and you will be brought to either a post or a thread made by that particular member. Just fool around a bit with this and you will soon get the jist of it. If not, ask again for help. By now you will know how to post and find answers as instructed on the page FAQ.

Next try New Posts. Left click on this one and you will get a page with New Posts...and responses. Click on anything you would like to read about. If you make a mistake...no problem...you really can't do anything wrong to the site...you can just get deverted a little and have to try again.

Quick Links will provide you with a drop down list. Chose whatever one you want to see and left click it...and you will be brought to the appropriate page.

Log out...don't bother with this one. Don't log out. You'll just come back to the forum when you want to by putting in:
allaboutparkinsons.com/forum/

Good luck Carlotta. I know how you feel. When I started with the Forum in April, I couldn't find anything. But with the help of many new and good friends, I finally got around the Forum and learned many new and helpful things about PD and the Forum.

I hope you find my message to you and that it helps you get started in knowing us.

Margie :)

[mappergal]

Hi Susan, Heather and everyone.
When I was given my layoff notice I was devastated as writing and typing are very hard for me. I have lost my fine motor skills, I think the stress of getting laid off worsened my symptoms. My hands do not work well and I type with one finger per hand, which makes typing a slow process. Handwriting is hard too!
My main job is Project Manager at a government agency over various computer mapping projects--lots of typing and note taking. My current employer was OK with me going slow, and the director swears he had no idea I had PD when he laid me off although it was i my file; I was laid off due to my income along with 25 other people. I was given a 90 notice.
I received a call from someone at my work and they told me to look at taking a disability/medical retirement. By doing this, I will get medical benefits from the government agency I work for, for the rest of my life. I can also go on disability, my doctor says my symptoms are advanced enough that I should qualify. I will also get my pension. Our Human Resources director did not tell me any of this but once I asked about it, she has been very helpful. I probably could have stayed where I am at for a few more years , but they laid me off and starting over in a new agency where they don't know me will be difficult with my PD and I need the benefits. My attitude has brightened a bit since I got this info. I can't work but I will volunteer to keep active.
My other symptoms are slow movements, but that's better with my meds and I forget to walk heel to toe and I have had a few major falls due to that. I also experience aggressive dreams, not nightmares but lots of yelling and cussing, not like me at all. My worse symptom is my right toes scrunch up when my drugs are wearing off , they hurt and I can barely walk. If I take my Sinemet, then this disappears after a little while.
I take Azelict, Sinemet and Amanadine. I have not heard about madapar but will ask my doctor about it; I see him in a couple of weeks.
The graphic was beautiful Heather, it made my day!!

[susan wheatley]

hi mappergal, glad to hear your feeling a bit brighter today, and things are sorting them selves out, madapar does have another it probaly has a few but on the bottle from the pharmecey it does say co-beneldopa, my toe,s do the same as yours my r/hand also does the same thing not quite as bad with madapar, i was watching a documentry on tv the other night it was about a young man of 25 who was diagnosed at 18 how awful is that to be faced with pd at our age but 25 must be very scary we a lucky compared to him if lucky is the right word, well got to go now am going to work thank goodness its friday speak to you soon god bless susan.

[heather]

Hi mappergal
so glad you are getting sorted,it must have been a worry for you
Glad you like my little graphics it's a hobby i like, would love to learn psp but takes a lot of time.

[JD2008]

I'm Jennifer from Ontario, Canada- 63 yrs old, female. Dx about a yr ago, but had signs back awhile, like everyone else.....I'm not on any medication and wonder how many others out there are the same. I walk funny - slap, slap on the pavement and much prefer uneven ground, steps etc to flat concrete. Recently bought hiking sticks - really recommend them. If you use your arms your feet seem to follow..
My symptons are some freezing, small handwriting, very slow typing - tremor seems to be less lately. I run a B&B but have cleaning help.I manage to do most of what I did before - so consider myself lucky conpared to others but sometimes still can't believe I have this!

[Juanita Mullin]

Hi, I was diagnosed in January. I am not on any medication but on my own decided to take CoQ10 1200 miligrams a day. I believe it has helped me--I do not have as much tremor and my walking is better.

[Pauline]

I'm Jennifer from Ontario, Canada- 63 yrs old, female. Dx about a yr ago, but had signs back awhile, like everyone else.....I'm not on any medication and wonder how many others out there are the same. I walk funny - slap, slap on the pavement and much prefer uneven ground, steps etc to flat concrete. Recently bought hiking sticks - really recommend them. If you use your arms your feet seem to follow..
My symptons are some freezing, small handwriting, very slow typing - tremor seems to be less lately. I run a B&B but have cleaning help.I manage to do most of what I did before - so consider myself lucky conpared to others but sometimes still can't believe I have this!

Hi Jennifer Welcome to the forum I'm also from Ontario Canada , there are alot of very nice people here and we are all in the same boat , :):):)Pauline

[heather]

I'm Jennifer from Ontario, Canada- 63 yrs old, female. Dx about a yr ago, but had signs back awhile, like everyone else.....I'm not on any medication and wonder how many others out there are the same. I walk funny - slap, slap on the pavement and much prefer uneven ground, steps etc to flat concrete. Recently bought hiking sticks - really recommend them. If you use your arms your feet seem to follow..
My symptons are some freezing, small handwriting, very slow typing - tremor seems to be less lately. I run a B&B but have cleaning help.I manage to do most of what I did before - so consider myself lucky conpared to others but sometimes still can't believe I have this!

Hi
http://i10.photobucket.com/albums/a126/maesisaf/sit%20pictures%20not%20used/welcomehumbirdtncopy.gif

Hope you are well,
I'm Heather and look after my hubby Jim

look forward to chatting more

[susan wheatley]

hi jd2008, nice to speak to you i am 48 was diagnosed 5yrs ago, i didnt start taking meds until april last year and was a bit uncertain and scared of the side effects the meds i started on i am not on now the combination seems to work that i take at present i to walk with the slap slap effect good way to describe it dont have any tremors as yet am quite lucky really if thats the right word good mental attitude does help think posative, speak again soon susan.

[JD2008]

Hi Susan,

Thanks for your reply. I'm never sure where the replies go (or my own answers go for that matter). I sometimes just look through the members list and what has been posted - could take a long time! My main problem is balance and a silly walk that John Cleese would like to copy..............;lots of tremors too - both hands but they don't bother me as much as the lack of balance and walking. I do walk well if I have my two walking sticks and follow my husband. The sticks are brilliant - just need the time to get out but our B & B almost on the market..................I am going to try medication if I can reach my Neuro this week - she's only working now and again it seems! Jennifer:rolleyes:

[Gail]

Hi Susan,

Thanks for your reply. I'm never sure where the replies go (or my own answers go for that matter). I sometimes just look through the members list and what has been posted - could take a long time! My main problem is balance and a silly walk that John Cleese would like to copy..............;lots of tremors too - both hands but they don't bother me as much as the lack of balance and walking. I do walk well if I have my two walking sticks and follow my husband. The sticks are brilliant - just need the time to get out but our B & B almost on the market..................I am going to try medication if I can reach my Neuro this week - she's only working now and again it seems! Jennifer:rolleyes:Hi Jennifer, I have the same problem locating the replies. I am finally figuring it out a little at a time. For a while, I thought no one was replying to me at all. I just recently started finding old replies to me. Anywa, if I haven't said "hi" yet, then "hi". I am 53 and was diognosed three years ago. I also walk with slap, slap you described and prefer walking on uneven ground. I hike alot, using a walking pole. It is so much easier for me to climb a mountain that to walk on flat ground. Hope to talk to you again. Gail

[Pauline]

Hi Jenniffer and gail welcome just give your self time you will get use to the forum hope you both have a good day just read the new posts and jump right in and say hello we all love to chat :):):)Pauline

[susan wheatley]

jennifer,

nice to hear from you hope you are well today, sounds like you might need some help via mediction dont mean to be so blunt sorry if i sound like it, my symptoms are mild compared to yours i waited 5yrs before i started to take anything so hope you get to see your neurologist soon take care susan.

[heather]

Hi Susan,

Thanks for your reply. I'm never sure where the replies go (or my own answers go for that matter). I sometimes just look through the members list and what has been posted - could take a long time! My main problem is balance and a silly walk that John Cleese would like to copy..............;lots of tremors too - both hands but they don't bother me as much as the lack of balance and walking. I do walk well if I have my two walking sticks and follow my husband. The sticks are brilliant - just need the time to get out but our B & B almost on the market..................I am going to try medication if I can reach my Neuro this week - she's only working now and again it seems! Jennifer:rolleyes:
HiJennifer
Hope you are well
If you go to top of page click on Quick link
you can see today's post's , to the left of there New posts then at the very very bottom Archives you will find all topics, with lot's of post's, that are not shown on front page
hope that helps

[heather]

Hi Jennifer, I have the same problem locating the replies. I am finally figuring it out a little at a time. For a while, I thought no one was replying to me at all. I just recently started finding old replies to me. Anywa, if I haven't said "hi" yet, then "hi". I am 53 and was diognosed three years ago. I also walk with slap, slap you described and prefer walking on uneven ground. I hike alot, using a walking pole. It is so much easier for me to climb a mountain that to walk on flat ground. Hope to talk to you again. Gail

Hi Jennifer/Gail
Hope you don't mind me competing on this, but i hope it may help.
I think this post has been missed, because it's posted under Hello , and not in the medication Section, not every one comes in Hello, and may only be interested in medication ,or Parkinson section , hope you don't think i'm interfering .

[heather]

http://i10.photobucket.com/albums/a126/maesisaf/Good%20day%20evening%20etc/hellosparklyheart.gif

[Gail]

Hi Jennifer/Gail
Hope you don't mind me competing on this, but i hope it may help.
I think this post has been missed, because it's posted under Hello , and not in the medication Section, not every one comes in Hello, and may only be interested in medication ,or Parkinson section , hope you don't think i'm interfering .
Heather, I never think you are interfering and always appreciate you comments and advice. Gail

[suzie Q]

Heather your advice is always appreciated by me.I would not have been able to put my pictures on without your help always good to hear from you .

Sue

[heather]

Thank you both
drew has been in touch with Lianna , and asked for us to put Attachment's on, i don't no how to do this,on hear, so have asked him to explain, it could be a better way, then we can choose which is the best, so then no excuses for pictures ;);)

[Drew Saunders]

If having signed on to the site so right to the bottom of the pages bottom left and it will show you what you can and cannot do within the forum. If you think it ought to be changed contact Lianna and she will sort it out for you

[MargieB]

Heather your advice is always appreciated by me.I would not have been able to put my pictures on without your help always good to hear from you .

Sue

Dear Heather,

I wouldn't know how to manuever around the Forum, how to post anything, how to understand all the different facets of the Forum...all because you hung in there with me and still do. You explain things quite well. You along with ltd_addition help me get my degree in Forumism :)
http://i302.photobucket.com/albums/nn88/Bronx628Margie/gradpic2.jpg Neither of these to ladies is me...just wanted to show you my Degre in Forumism that I got because of you!

So not another word (well maybe a few more) about you not being good with words, explaining, etc. I am living proof that you are very good.

Love you,
Margie :)

[heather]

Marge don't :o me
i just love seeing everyone having a good time/laugh
and spending a little time, forgetting, about you no who
OK this is me about 5 years ago. I did my diploma in nursing
Jim Tracy my daughter and I both went to Bangor university, for my Gown and cap ceremony, I would normally have not gone, but we both new it was another memory,
http://i10.photobucket.com/albums/a126/maesisaf/Picture078.jpg
http://i10.photobucket.com/albums/a126/maesisaf/Picture076.jpg
http://i10.photobucket.com/albums/a126/maesisaf/sit%20pictures%20not%20used/Picture079.jpg

[Pauline]

Heather Iam another I wouldn't be posting if it wasn't for you you really are a good teacher you should take a bow you deserve it :):):)Pauline

[Drew Saunders]

Marge don't :o me
i just love seeing everyone having a good time/laugh
and spending a little time, forgetting, about you no who
OK this is me about 5 years ago. I did my diploma in nursing
Jim Tracy my daughter and I both went to Bangor university, for my Gown and cap ceremony, I would normally have not gone, but we both new it was another memory,
http://i10.photobucket.com/albums/a126/maesisaf/Picture078.jpg
http://i10.photobucket.com/albums/a126/maesisaf/Picture076.jpg
http://i10.photobucket.com/albums/a126/maesisaf/sit%20pictures%20not%20used/Picture079.jpg

Well done Heather, you are a marvel. Full time carer, gardener and goodness knows what else and part time nurse. I don't know how you do it but I do applaud you most sincerely,
God Bless

[Gail]

Heather, thanks for shaing the pictures. I love seeing the faces of the people I am partying with.

[heather]

Well done Heather, you are a marvel. Full time carer, gardener and goodness knows what else and part time nurse. I don't know how you do it but I do applaud you most sincerely,
God Bless

Thanks drew
You no the saying
Jack of all trades master of none,:D

[heather]

Heather, thanks for shaing the pictures. I love seeing the faces of the people I am partying with.
Hi Gail
Thank you
Jim has lost a lot of weight since then, and i have grown my hair, just don't seem to find the time to go to hair dresses

[heather]

http://i10.photobucket.com/albums/a126/maesisaf/8e0c9c19.gifS

[susan wheatley]

heather its nice to put a face to the name, hope both of you are well.

[heather]

Hi Sue
I have contacted Lianna to see if she could open us a section
on posting Family pictures, so we could make a album of just pix's as they are all in different places, we could open our own Topic ie Susan , Drew, etc etc in the section, and keep adding pictures as we want

[susan wheatley]

good idea heather keep me posted.

[heather]

will do,i think there are so many lovely pictures of family's, but unless you follow the topic, some will never see them

[Pauline]

I hope you can sound great

[MargieB]

Marge don't :o me
i just love seeing everyone having a good time/laugh
and spending a little time, forgetting, about you no who
OK this is me about 5 years ago. I did my diploma in nursing
Jim Tracy my daughter and I both went to Bangor university, for my Gown and cap ceremony, I would normally have not gone, but we both new it was another memory,
http://i10.photobucket.com/albums/a126/maesisaf/Picture078.jpg
http://i10.photobucket.com/albums/a126/maesisaf/Picture076.jpg
http://i10.photobucket.com/albums/a126/maesisaf/sit%20pictures%20not%20used/Picture079.jpg




Dear Heather, http://i302.photobucket.com/albums/nn88/Bronx628Margie/Friendship-bluebirds.gif

Thanks so much for sharing the wonderful pictures. It is very nice to see the faces of the friends we share so much with.
I can't believe I'm fortunate enough to have a girlfriend(s) in the UK, Canada, Texas, Austrailis, etc. just through this wonderful Forum. I'm very grateful to Dianna to have made it all possible.

Hopefully I will learn how to post photos. I don't know as yet how to get them into the computer and then on a site. I did one on my e-mail but then typed over it and couldn't rectify it. Am just a nophyte. I'll learn though. Got a book on it :D.

Stay well my friend.

Hello to Jim from us.

Love,
Margie:)

[heather]

Dear Heather, http://i302.photobucket.com/albums/nn88/Bronx628Margie/Friendship-bluebirds.gif

Thanks so much for sharing the wonderful pictures. It is very nice to see the faces of the friends we share so much with.
I can't believe I'm fortunate enough to have a girlfriend(s) in the UK, Canada, Texas, Austrailis, etc. just through this wonderful Forum. I'm very grateful to Lianna to have made it all possible.

Hopefully I will learn how to post photos. I don't know as yet how to get them into the computer and then on a site. I did one on my e-mail but then typed over it and couldn't rectify it. Am just a nophyte. I'll learn though. Got a book on it :D.

Stay well my friend.

Hello to Jim from us.

Love,
Margie:)

Hi Margie
Have you got any pictures on your computer, If so just do it the same as other,you may have to click on the down file button at the top to find the file you have got it in,

The one you did in a e-mail you could right click,and save it in your picture file you have the lovely one you have done above

Or juste-mail it to me and ill put it on, haven't heard from Lianna yet, If she says yes , then i will start a copy ofmine,
i have asked for a main heading like we have Hobbies, laugh etc, as i thought we could do our own personal album, then be able to photos,ie Family Pets Birthday Holidays etc hope that makes sense

[Drew Saunders]

Hi Margie
Have you got any pictures on your computer, If so just do it the same as other,you may have to click on the down file button at the top to find the file you have got it in,

The one you did in a e-mail you could right click,and save it in your picture file you have the lovely one you have done above

Or juste-mail it to me and ill put it on, haven't heard from Lianna yet, If she says yes , then i will start a copy ofmine,
i have asked for a main heading like we have Hobbies, laugh etc, as i thought we could do our own personal album, then be able to photos,ie Family Pets Birthday Holidays etc hope that makes sense

Great idea Heather. Let's hope you hear from Lianna soon, Hope both you and Jim are having the best day you can,
God Bless
Drew

[heather]

Hi Drew
not heard from Lianna :(

[Drew Saunders]

Hi Drew
not heard from Lianna :(

Would you like me to request the picture section?

[heather]

Hi Drew thanks for that
didn't get on the site yesterday , by 9.30pm i was just to tired to switch my computer on, i'm off for a week now, so have time to catch up
Thank you again, i have read your post to Lianna

[dajudge]

Heather-----best wishes and keep us posted.
dajudge

[MargieB]

Great idea Heather. Let's hope you hear from Lianna soon, Hope both you and Jim are having the best day you can,
God Bless
Drew

Hi Both of You,

I do have some pictures on file in my computer but right now am having computer problems. Can't get it to work the way it should. Could actually be the electricity. Here where we are it has been very humid and hot. The Electrical Company (Con Edison) has cut power back quite a bit so that there will not be a black out. So I am guessing that could be causing the reaction in my computer.

Will catch up with the picture stuff at a later date.

Hope you all will have a good day tomorrow.

Margie :)

[heatherwilmot]

Morning everyone from Heather(Prill)
Yes, a big thank you to Lianne Marie, how did I manage before I discovered the book and the Forum.
In a rush this morning off to 'sit' (take care of) the granchildren while their Mummy and Daddy pack the car ready for their Devon Holiday, they live a good life. recently 'did' Norfolk, come back for a couple of weeks this time then off to see relatives in Holland.
I am wary of saying this but the sun is breaking through the clouds. fingers crossed it might last a while.

Hope you all start of your day well, not too many shakes, creaks and groans, mind you I would not know what to do if I just stood up and strode away, oh happy memories!! still at least after a bit of stretching etc I can still walk away, some days better than others so ..no moans.
good luck. Heather(Prill)

[heatherwilmot]

Hi, my name is Shayne and I was diagnosed with PD in 2005 at the age of 46. After CATS, MRI's, and more in search of something else, it was decided. I am doing ok except for the backing up alot, and with lots of jokes and laughter with my family and friends, I have kept my attitude up beat with little depression. I am starting to have some pretty down days so this site is just what I need to help me through, as I know a good attitude will be the only thing that will get me through. Thanks Lianna and all. Shayne Earp

From Heather(P). "Take more water with it" , is the no longer funny quote I get as I totter backwards across a room. If I did drink then at least I would have had the fun. try to make sure you have a beautiful blonde/brunette behind you when you next totter, I try to look for a handsome fella, well might as well make use of our trials and tribulations. Try not to fall down though, I landed on my bottom fair and square, it is over 4 weeks now and although nothing is broken it is still very painful.
You are right, keep your sense of humour and you are half way there.
Good luck and keep smiling. Speak again soon.
regards Heather(P)

[heather]

Hi Both of You,

I do have some pictures on file in my computer but right now am having computer problems. Can't get it to work the way it should. Could actually be the electricity. Here where we are it has been very humid and hot. The Electrical Company (Con Edison) has cut power back quite a bit so that there will not be a black out. So I am guessing that could be causing the reaction in my computer.

Will catch up with the picture stuff at a later date.

Hope you all will have a good day tomorrow.

Margie :)

Hi Margie
hope you manage not to have a power cut,
take care give Tony our love
keep smiling
http://i10.photobucket.com/albums/a126/maesisaf/MIXEDlaughwrinklesfrog.jpg

[heather]

Heather-----best wishes and keep us posted.
dajudge
Hi dajudge
http://i10.photobucket.com/albums/a126/maesisaf/coollogo_com_27937475.gif
hope you are well,
where do you live
Hope you don't mind me asking are you a carer or a PD
i'm a care for my husband Jim, have been for over 12 years now
look forward to reading your posts , and chanting some time
just jump in anywhere, we love new members :):)

[heather]

Morning everyone from Heather(Prill)
Yes, a big thank you to Lianne Marie, how did I manage before I discovered the book and the Forum.
In a rush this morning off to 'sit' (take care of) the granchildren while their Mummy and Daddy pack the car ready for their Devon Holiday, they live a good life. recently 'did' Norfolk, come back for a couple of weeks this time then off to see relatives in Holland.
I am wary of saying this but the sun is breaking through the clouds. fingers crossed it might last a while.

Hope you all start of your day well, not too many shakes, creaks and groans, mind you I would not know what to do if I just stood up and strode away, oh happy memories!! still at least after a bit of stretching etc I can still walk away, some days better than others so ..no moans.
good luck. Heather(Prill)

Hi Heather P
hope you are well
is this or next Friday, your last time you will be wearing away or roads in Wales, till September :D:p;)

If i didn't have any aches and pains,[ old age] i would panic, looking in the mirror, and not been able to justify the white hair and wrinkles :eek:

[heatherwilmot]

Hi Heather P
hope you are well
is this or next Friday, your last time you will be wearing away or roads in Wales, till September :D:p;)

If i didn't have any aches and pains,[ old age] i would panic, looking in the mirror, and not been able to justify the white hair and wrinkles :eek:


Hi Heather Sen. from Heather(P)
Haven't spoken for a while but I have read lots of interesting items by you and many others, there are now names which are becoming familiar, however there seem to be many new people finding the site, which is great because it can help those feeling isolated to reaise we are all out here, having problems in varying degrees of severity.
i am making lists of the medicines, some I have never gheard of, American or Australian etc I guess, but Sinimet comes up often, I feel I need something to stop me falling backwards and tottering on tippy toe, i know there is no magic cure but a little help woul be appreciated.
No, my visits to Chester will be at odd times now, we are having the boys, one at a time I am glad to say, for 4 or 5 days at a time, with a couple of days in between to re-=charge batteries, mine not theirs!
Will holler as we pass. I have the children trained as well!!
Have a good Sunday. God Bless. Oh, you never asked... My first ever reading at last Sunday Church Service was lovely, I have been asked to do it again. Never too old to experience something new!! Luv. Heather(P)

[heather]

Hi Heather Sen. from Heather(P)
Haven't spoken for a while but I have read lots of interesting items by you and many others, there are now names which are becoming familiar, however there seem to be many new people finding the site, which is great because it can help those feeling isolated to reaise we are all out here, having problems in varying degrees of severity.
i am making lists of the medicines, some I have never gheard of, American or Australian etc I guess, but Sinimet comes up often, I feel I need something to stop me falling backwards and tottering on tippy toe, i know there is no magic cure but a little help woul be appreciated.
No, my visits to Chester will be at odd times now, we are having the boys, one at a time I am glad to say, for 4 or 5 days at a time, with a couple of days in between to re-=charge batteries, mine not theirs!
Will holler as we pass. I have the children trained as well!!
Have a good Sunday. God Bless. Oh, you never asked... My first ever reading at last Sunday Church Service was lovely, I have been asked to do it again. Never too old to experience something new!! Luv. Heather(P)

Hi Heather
hope you are well
There are so many new people now I had to go through the members list, to make a list who is carers and who is PD :eek:
It will be nice you having the boys for a few days, it must get tiring travailing back and to,
So glad your reading went well, and you do go back to do it again, it proves we are never to old, to learn, and don't forget to teach.
good luck with the medication, Jim has sinimet P, his neurologist
doesn't no if it's doing anything, but i notice the difference, if i forget to give him his tea time one , so if it's not broken, we are not going to mend it ;)

just a little help for you

http://i10.photobucket.com/albums/a126/maesisaf/fairyfantasy025.gif

I started a list of medications, and side affects etc, but with Jim only being on sinimet plus,and he is not a true PD i didn't think it was right for me to comment, as the only research i had was off the net, not personal side affects, [hope that makes sense

[kangaken]

Hi, my name is Ken and I've had PD for about 11 years. The medication I take is terrific, it's enabled me to live basically a normal life up until last year when I felt I had to retire from work. Retirement is great. I have a lovely wife. We are both Christians and we know that God looks after us everyday. With each new morning, we find there is always something to be thankful for. Living in Australia is one of them.

[suzie Q]

hI kEN GREAT TO HEAR FROM YOU .i ALSO LIVE IN AUSTRALIA ,TASMANIA ACTUALLY IT IS A GREAT PLACE TO LIVE I AGREE WITH YOU.

I HAVE HAD PARKINSON DISEASE FOR ABOUT 5 YEARS ,
AND AT THE MOMENT I HAVE GONE OFF MY MEDICATION AND TRYING THE HERBAL APROACH.
I HAVE BEEN DOING THIS FOR ABOUT 6 MONTHS AND I AM FEELING WONDERFUL .
IT PROBABLY WOULD NOT WORK FOR EVERYONE ,BUT IT DOES FOR ME AND I AM GOING TO STAY ON IT FOR AS LONG AS IT WORKS .I DONT HAVE ALL THE SIDE EFFECTS THAT I HAD WITH THE MEDICATION I WAS ON BEFORE .ANYWAY NICE TO TALK TO YOU CATCH YOU LATER ON THE FORUM

SUE

[Drew Saunders]

Hi, my name is Ken and I've had PD for about 11 years. The medication I take is terrific, it's enabled me to live basically a normal life up until last year when I felt I had to retire from work. Retirement is great. I have a lovely wife. We are both Christians and we know that God looks after us everyday. With each new morning, we find there is always something to be thankful for. Living in Australia is one of them.

Hi Ken. Great introduction from you. I've had PD about same time as you and apart from mobility (a nuisance) feel the same way as you. Elaine, my wife, retires next January and we are both lloking forward to it so we can do much more together. We are looking into spending more time in Malta. UK weather leaves a little to be desired at times.
Nice to have another bloke on the forum. I'm surrounded by women but I am not complaining - ladies really I'm not! Look forward to your contributions, Regards, Drew

[kangaken]

Thanks for your welcome. Sue, you live in a wonderful part of Oz. I've been hoping to get there one day but not as yet. I've heard of people using natural remedies, some have had good results and with others it didn't work. Being an ex hippy I have used a number of herbal concoctions but I'm afraid they didn't work for me and I've usually had to go back to popping antibiotic pills or whatever to get my body back into working order. I wish you all the best though and I hope the natural remedies continue to work for a very long time. As for me, my body waits hungrily for the next dose of pills. If the pills are not on time I go into what I call "Blancmange brain" where holding a viable conversation with someone or trying to work out what 2 and 2 adds up to becomes comically difficult. I won't rave on any more. Glad to hear from you all and I hope I'll be back soon. Ken has left the building!

[dollybird]

Hello everyone i am from Sydney, Australia and i feel a little out of my depth. I am a Registered Nurse and am doing my aged care certificate. I have just completed a case study on Parkinson's Disease and have learnt so much about this disease and would love to hear from anyone what sort of treatment you are under going whether it be medication or alternative therapy. So i hope you don't mind me coming to the forum just to get that little bit of extra knowledge. Thanks everyone - cheers!

[Pauline]

Hi Everyone,

My name is Jan and I was diagnosed with PD about 2 years ago. Mine is hereditary as my Mom also has it and so did one of her brothers. I take medication on a daily basis that keeps the tremors under control but I do have trouble with my balance and my handwriting which has always been good is terrible. I retired from my job with Nestle about 9 years ago and after taking some time off I decided to go back to work. I now work at a bank and really enjoy my job but it is getting more difficult to do so I have cut back to only two days a week. I'm looking forward to chatting with other people and finding out how they cope on a day to day basis. Thank you so much for starting this forum and giving everyone the opportunity to share our thoughts and our problems.


HI Jan
Welcome to the forum I was diagnosed in Jan, with PD, but have had it alot longer than that , I am on a ton of meds, that help to a degree but I find keeping busy and exercise helps I also have poor balance but I try and walk daily and I swim witch helps , ( I must say I was doing those things up until 3 weeks ago and I fell and broke my foot so right now I am in a cast but as soon as it is off I will I will continue my exercise Program you will find alot of nice people here all fighting the same battle the main thing is we don't give up and stay positivehope to cat again soon take care :):):)Pauline
http://i302.photobucket.com/albums/nn95/Paulineby2000/flob97fd28d5500_myspacebutterflyros.gif

[kandur]

Hi,My name is Marylou. I was diagnosed about 10 years ago and luckily no one can even tell I have Parkinson's. I was 41 when I was diagnosed. I still work and intend to do so for as long as I can.
My biggest problem is my left hand is stiff and my toes cramp. Like now it takes me forever to type with my left hand, it's slow.
I'm happy to hear that exercise is important, I need to get back to doing things other than work.
When I was first diaganosed I wasn't sure what would happen to me but I've been lucky and I have a positive attitude, maybe that helps.:)

[Pauline]

Hi,My name is Marylou. I was diagnosed about 10 years ago and luckily no one can even tell I have Parkinson's. I was 41 when I was diagnosed. I still work and intend to do so for as long as I can.
My biggest problem is my left hand is stiff and my toes cramp. Like now it takes me forever to type with my left hand, it's slow.
I'm happy to hear that exercise is important, I need to get back to doing things other than work.
When I was first diaganosed I wasn't sure what would happen to me but I've been lucky and I have a positive attitude, maybe that helps.:)

Hi Marylou
Welcome Yes a positive attidute does help and exercise is very important , none of us know how it is going to affect us as we are all differant but keeping your live style the same is important you may have to adjust here and there as you go along but just treasure your good days and forget the bad . well take care and welcome hope to chat again :):):)Pauline



http://i302.photobucket.com/albums/nn95/Paulineby2000/th22roses.gif

[Renie920]

I really do not have anyone to talk to about my PD and the challenges I face every day so I'm very thankful I found this web site. I was diagnosed with PD in 2003 however it started way before that time as I had tremors in my left hand for approximately 2 years before then. I do get very frustrated as there are so many things that are difficult for me to do and that take me so long to do but I do not give up. I do hope that I will be hearing from others and that I will be able to share my feelings and concerns with them.
By the way, my name is Irene, which I should have mentioned at the start.

[suzie Q]

Hi Irene welcome to the forum ,My name is sue and i have had p.d. 5 years .This a great place to be able to talk and find information about p.d .i try and stay positive most of the time .also keeping busy and active is also important .it is a great place to be able to come to for advice, just a talk and friendship, from people who understand what you are going through , hope to hear from you again


sue

[Pauline]

Hi Irene
Welcome to the forum we are all here to help each other it can be very hard to talk to people who don't have PD, my family are very good but they don't like to talk about my PD, that is why this forum is so great there is always some one who will listen and understand what you are going through ,
my name is Pauline I am 58 yr, young was diagnosed in Jan,
you sound like you have a positive attitude and that is very important my motto is rember the good days and for get about the bad well take care hope to chat again soon :):):)Pauline http://i302.photobucket.com/albums/nn95/Paulineby2000/flob97fd28d5500_myspacebutterflyros.gif

[Gail]

Hi Irene,

I am 53 and was diagnosed 3 years ago. I am still working, but like you, getting slower. Luckily for me, my boss is very supportive. My family keeps me busy, which I love. I go hiking most sarurdays and o to the gym most weekdays. I keep hearing that exercise will keep us going, so I exercise as often as possible. I'm not great at giving advice, but am a good listener. Welcome to the forum.

Gail

[Renie920]

Hi Pauline,
It's so very good to hear from you and read your words of encouragement. I tell myself every day that this will not get me down. I'm going to be 75 next month and really looking forward to it which may seem odd......however I consider it a milestone in my life. I do stay upbeat most of the time but I do get some "down" days but they are very few and far apart.
It makes me feel better to know that I have someone I can discuss things with and know what I'm talking about. When I say to someone that my muscles are stiff I get an answer back that they are stiff and they don't have PD so it's nothing new. I have lots of arthritis in my back and as a result walking goes very hard for me but I "waddle" around although I can't walk far. Thanks so much for listening. Irene

[Renie920]

Hi Gail,
Great to hear from you and your encouraging words. I am a widow for 6 years now.....will be 75 next month......have no children. I live with friends who have always been as close to me as family......so I'm not alone.......however they just don't seem to be interested in PD and how it has affected me. It's very comforting to me now that I have found this forum and can talk to other people who know what PD is all about and how they deal with it. I am also a good listener. Irene

[Pauline]

Hi Irene
good to here from you I know what you mean when you say people who don't know what it is like , my big thing is I don't sleep and everyone is telling me what I should do or what I am doing wrong and that flustrates me to know end ,if it was as easyas they think I would have done it so it is nice to talk to people who know what it is like but people only understand what they can see and I guess there is things that others have that we don't understand but that is life and we just have to make the best out of it well take care hope to hear from you again I love to chat so I am here a lot :):):)Pauline

[Gail]

Hi Gail,
Great to hear from you and your encouraging words. I am a widow for 6 years now.....will be 75 next month......have no children. I live with friends who have always been as close to me as family......so I'm not alone.......however they just don't seem to be interested in PD and how it has affected me. It's very comforting to me now that I have found this forum and can talk to other people who know what PD is all about and how they deal with it. I am also a good listener. Irene Irene, I have four children and two, almost three grand-kids. My chilfren are anxious for me to move in with them, but they have a long wait. I have very supportive friends and family, but it just isn't the same as sharing with someone in the same shoes.

Gail

[suzie Q]

Re: Hello and welcome!

--------------------------------------------------------------------------------

Hi Irene welcome to the forum ,My name is sue and i have had p.d. 5 years .This a great place to be able to talk and find information about p.d .i try and stay positive most of the time .also keeping busy and active is also important .it is a great place to be able to come to for advice, just a talk and friendship, from people who understand what you are going through , hope to hear from you again


sue

[heatherwilmot]

Irene, I have four children and two, almost three grand-kids. My chilfren are anxious for me to move in with them, but they have a long wait. I have very supportive friends and family, but it just isn't the same as sharing with someone in the same shoes.

Gail



Heather (P) here - Morning all, I do love this site, always something and/or someone new, mostly expressing feelings I have had, or I know I will have.
For example: If anyone else says to me as I get out of my chair and start my shuffling way towards a door ( I do get better after a few steps I hasten to add) "Now come along BIG STEPS - BIG STEPS" I think they might get "BIG FISTS - BIG FISTS" right in the eye. sorry I needed that, I am not really a violent person, but I am doing my best and don't need silly statements......
Hope you all have a good day, the sun is shining, 7 am. and I have good friends staying so what's wrong, it could be worse - oh I hate these cheerful people - joke.
Love to all. Heather (P)

[suzie Q]

HiHeather you always sound so chirpy and happy hope you have a great day

sue

[suzie Q]

Hello everyone i am from Sydney, Australia and i feel a little out of my depth. I am a Registered Nurse and am doing my aged care certificate. I have just completed a case study on Parkinson's Disease and have learnt so much about this disease and would love to hear from anyone what sort of treatment you are under going whether it be medication or alternative therapy. So i hope you don't mind me coming to the forum just to get that little bit of extra knowledge. Thanks everyone - cheers!

Hi Dollybird

sorry missed your post


i have had parkinson's disease for 5 years .
at the moment i have gone off my medication because i had so many side effects i did not know what was parkinson's and what was the medication .i have been on mucuna pruriens for 6 months and am feeling wonderful .Hope it lasts who knows .talk again


sue

[suzie Q]

Hi,My name is Marylou. I was diagnosed about 10 years ago and luckily no one can even tell I have Parkinson's. I was 41 when I was diagnosed. I still work and intend to do so for as long as I can.
My biggest problem is my left hand is stiff and my toes cramp. Like now it takes me forever to type with my left hand, it's slow.
I'm happy to hear that exercise is important, I need to get back to doing things other than work.
When I was first diaganosed I wasn't sure what would happen to me but I've been lucky and I have a positive attitude, maybe that helps.:)


Hi Marylou great to hear from you .i have a left hand that doesnot want to co-operate .It it is great to hear that you are
coping well with your parkinson's maybe it is the positive attitude because i have a positive attitude keep myself busy and am still working and enjoying life.Cant let this get us down we only have one life and we have to make the most of it what we have talk again soon

sue

[Gail]

Heather (P) here - Morning all, I do love this site, always something and/or someone new, mostly expressing feelings I have had, or I know I will have.
For example: If anyone else says to me as I get out of my chair and start my shuffling way towards a door ( I do get better after a few steps I hasten to add) "Now come along BIG STEPS - BIG STEPS" I think they might get "BIG FISTS - BIG FISTS" right in the eye. sorry I needed that, I am not really a violent person, but I am doing my best and don't need silly statements......
Hope you all have a good day, the sun is shining, 7 am. and I have good friends staying so what's wrong, it could be worse - oh I hate these cheerful people - joke.
Love to all. Heather (P)

Heather,
I will have to try to remember to stay on your good side. Those BIG FISTS are kind of scarey.
Gail

[Mary]

Hi My name is Mary age 64 and I live in Liverpool England.I have had PD since 1999 but was not diagnosed until August 2001.I could not believe first diagnosis and requested second opinion and now have an excellent specalist.I am very very lucky as my PD is very much under control with my current medication of Sinemet Plus and Pramipexol but it did take time to strike the right balance.My worst problem is the slowness as I was used to doing everything at top speed but I now accept that period has now gone.I am glad this forum is available as up to now I have refused to go to Parkinson meetings because I want to play ostrich and not see how I might be affected in years to come, I will handle it when it arrives.I try to go for a good walk(very slowly) on as many days as possible .I thank God frequently that I was diagnosed only with Parkinsons and not a life threatening disease and I am still here to thoroughly enjoy my time with my 6 granchildren from 22 years down to 12 weeks.Long may it continue

[suzie Q]

Hi Mary

I have had parkinson disease for 5 years i am 53 .It is great to hear you are coping well with it .You are right at least we have something that we are not going to die of.i am well at the moment i have recentley gone off my medication and tried the herbal approach,as i had lots of side effects from the medication i was on.I live in Tasmania Australia and it is great to have this forum to meet and talK to others .hope to hear from soon


sue

[Pauline]

Hi Mary Welcome I am Pauline I am 58 was diagnosed in Jan, like you I was shocked and didn't want to beleive it I won't go to our local meeting either I just can't face it I will when the time come but for now just enjoying life as it is and I have 2 grandkids who keep me going and i have learn;t that exercise and a positive out look help hope to talk to you again soon :):):)Pauline http://i302.photobucket.com/albums/nn95/Paulineby2000/1029-002-57-1057-2.gif

[Gail]

Hi My name is Mary age 64 and I live in Liverpool England.I have had PD since 1999 but was not diagnosed until August 2001.I could not believe first diagnosis and requested second opinion and now have an excellent specalist.I am very very lucky as my PD is very much under control with my current medication of Sinemet Plus and Pramipexol but it did take time to strike the right balance.My worst problem is the slowness as I was used to doing everything at top speed but I now accept that period has now gone.I am glad this forum is available as up to now I have refused to go to Parkinson meetings because I want to play ostrich and not see how I might be affected in years to come, I will handle it when it arrives.I try to go for a good walk(very slowly) on as many days as possible .I thank God frequently that I was diagnosed only with Parkinsons and not a life threatening disease and I am still here to thoroughly enjoy my time with my 6 granchildren from 22 years down to 12 weeks.Long may it continue Hi Mary, I love your attitude. I too am playing ostrich. I figure I will find out what is going to happen as it happens. I can't worry about it until then. I am 53, diagnosed 3 years ago and my best time is spent with my grandkids.
i hope youi enjoy the forum. Gail

[Gail]

Hi,My name is Marylou. I was diagnosed about 10 years ago and luckily no one can even tell I have Parkinson's. I was 41 when I was diagnosed. I still work and intend to do so for as long as I can.
My biggest problem is my left hand is stiff and my toes cramp. Like now it takes me forever to type with my left hand, it's slow.
I'm happy to hear that exercise is important, I need to get back to doing things other than work.
When I was first diaganosed I wasn't sure what would happen to me but I've been lucky and I have a positive attitude, maybe that helps.:)Hi Marylou,elcome to the forum. It sounds like your attitude is keeping you going strong. Those cramped toes can be annoying. Yoga seems to help me relax everything, mind and body. I highly recommend it. Gail

[Gail]

Hi, my name is Ken and I've had PD for about 11 years. The medication I take is terrific, it's enabled me to live basically a normal life up until last year when I felt I had to retire from work. Retirement is great. I have a lovely wife. We are both Christians and we know that God looks after us everyday. With each new morning, we find there is always something to be thankful for. Living in Australia is one of them. Ken, I don't think I have said hello to you yet, so "HELLO". I am glad you are enjoying your retirement. I was diagnosed three years ago and I hope to retire next year. There is too much I would like to do and working seems to get in the way. Australia does sound like a lovely place to live. Gail

[suzie Q]

hope that i have not missed saying hello to any new members it is easy to do you read through and dont always get back to reply .So Hello to anyone who i have not welcomed

sue

[nelsontj]

I hope this is where I can introduce myself! A little unsure.

My name is Tom and my wife was diagnosed 3 years ago. We live in North Jersey, USA

For the most parts we're dealing with this but we have our moments as I'm sure everyone knows.

Thank you for this web site it is the most useful I've found.

[suzie Q]

I hope this is where I can introduce myself! A little unsure.

My name is Tom and my wife was diagnosed 3 years ago. We live in North Jersey, USA

For the most parts we're dealing with this but we have our moments as I'm sure everyone knows.

Thank you for this web site it is the most useful I've found.

Hi Tom

Welcome to the forum .It is a great place for information and also to be able to talk to people in a similar situation and make new friends.My name is sue and i have had parkinson's for 5 years i live in tasmania australia .i hope that you ejoy the forum as much as I do.hope to talk again soon

sue

[Pauline]

Welcome nelsontj
There are alot of very nice people here and we are al fighting the same battle , either as a care giver or a s a PD, sufferer either way we are all in it togeather just try and stay positive just enjoy what you have today and don't worry about tomorrow it will take care of it self :):):)Pauline http://i302.photobucket.com/albums/nn95/Paulineby2000/flob97fd28d5500_myspacebutterflyros.gif

[Gail]

Hi Tom, I am from sunny California. I was also diagnosed 3 years ago. As you indictated, we all have our moments, but the motto of this group is stay positive and live for today. I hope this forum helps you and your wife as much as it has helped me. Look forward to chatting. Gail

[Mary]

Thanks Sue for the welcome I have never been a part of a forum before, I will be interested in your results in going down the herbal route .
Mary

Hi Mary
I have had parkinson disease for 5 years i am 53 .It is great to hear you are coping well with it .You are right at least we have something that we are not going to die of.i am well at the moment i have recentley gone off my medication and tried the herbal approach,as i had lots of side effects from the medication i was on.I live in Tasmania Australia and it is great to have this forum to meet and talK to others .hope to hear from soon


sue

[Mary]

Hi Mary Welcome I am Pauline I am 58 was diagnosed in Jan, like you I was shocked and didn't want to beleive it I won't go to our local meeting either I just can't face it I will when the time come but for now just enjoying life as it is and I have 2 grandkids who keep me going and i have learn;t that exercise and a positive out look help hope to talk to you again soon :):):)Pauline http://i302.photobucket.com/albums/nn95/Paulineby2000/1029-002-57-1057-2.gif

Hi Pauline Thanks for welcome glad I am not the only ostrich but I agree with you a positive outlook is certainly helping me at the moment.I am looking forward to reading other Parky's comments and identifying things that are related to PD and other things that have nothing to do with PD
Mary

[Mary]

Hi Mary, I love your attitude. I too am playing ostrich. I figure I will find out what is going to happen as it happens. I can't worry about it until then. I am 53, diagnosed 3 years ago and my best time is spent with my grandkids.
i hope youi enjoy the forum. Gail

Hi Gail Thanks for welcome I also will not worry for too far ahead as it might never happen and if it does then I have to find an answer somehow, the problem may be different from what I expected it to be
Mary

[suzie Q]

Hi mary

I have been on the herbal for 6 months and doing really well .
the main reason that i did it was i had too much dyskenesia (extra movement).i cant believe that it worked for me ,but i am better than i have ever been for 5 years ,i still have timeas when not so good but all in all i am ok

sue

[Gail]

Hi Gail Thanks for welcome I also will not worry for too far ahead as it might never happen and if it does then I have to find an answer somehow, the problem may be different from what I expected it to be
Mary
Hi Mary, That is so true. We can't come up with the answers now, because we really don't know what the questions will be.

Gail

[MargieB]

Hi Mary, That is so true. We can't come up with the answers now, because we really don't know what the questions will be.

Gail

Hi Gail and Mary,
Such wisdom in so few words. I needed to read what both of you wrote. Thank you so much!
Margie :)

[Theresa]

hi theresa, welcome to the forum i have pd and have some dizziness but my pd nurse does,nt seem to concerned i have had my blood pressure checked its ok so i just grin and bear it for now iam also on levadopa and a combination of other drugs and like your dad dont have any tremor and they seem to work for me i was diagnosed 5yrs ago when i was 43 thankfully it hasnt progressed to fast pd treats everyone who has it differently some symptoms are similar but not the same, you might need to see your pd nurse if you have one your dad might need a different combination of meds its a case of trial and error dont worry to much speak to you soon susan.

Thank you so much for your input- I am sorry it took me so long to reply, but couldn't figure out how to- I hope I am doing this forum correctly now....any more input I would greatly appreciate. Hope you are well, God Bless.

[Mary]

Hi Pauline Thanks for welcome glad I am not the only ostrich but I agree with you a positive outlook is certainly helping me at the moment.I am looking forward to reading other Parky's comments and identifying things that are related to PD and other things that have nothing to do with PD
Mary

Hi Pauline
Is it you that cannot sleep? I looked forward to retirement and long sleep in instead of which I am up between 4.45am and at latest 6.00am after about 4 /5 hours sleep but I did not think it was related to PD just something started because I have finished work.Must admit now used to early starts and peaceful time to myself.As a newcomer I am enjoying catching up with entries on this forum
Regards
Mary

[suzie Q]

Hello, my name is Sherry. I was diagnosed with PD 5 years ago. I noticed my handwriting had changed, and I was clumsy handling equipment at work. I am a registered nurse, specializing in Oncology and Bone Marrow Transplant.
I have been on disability for 2 years now. I also experienced tremors and hand cramping (still do), and it was interferring with my ability to do nursing tasks. I was having difficulty doing tasks I had been doing for years, 20 years to be exact.
I now have difficulty walking, and I lose my balance.
I am also being treated for RA, and I have a problem with my spine. I try to maintain a positive outlook. I enjoy reading, and knitting when I can. My hands cramp, so I have to stop quite a bit of the time, but I still go on.
I was diagnosed at the age of 51. I was diagnosed the day after my birthday.
I look forward to hearing from fellow PD'ers.
Best wishes to all.


hi Sherry i think this post got missed to welcome it was way back in april and i cant see any replies .just wanted to say hi and sorry your post got overlooked .it is easy to do,back in april we had so many joining.anyway i hope that you come back and we can all say hello and welcome .i may be wrong but i could notfind any replies to your post

sue

[Pauline]

Hi Pauline
Is it you that cannot sleep? I looked forward to retirement and long sleep in instead of which I am up between 4.45am and at latest 6.00am after about 4 /5 hours sleep but I did not think it was related to PD just something started because I have finished work.Must admit now used to early starts and peaceful time to myself.As a newcomer I am enjoying catching up with entries on this forum
Regards
Mary

Hi Mary
Yes I have alot of trouble sleeping tonight being know exception went to bed about 11:30 did sleep till 2:30 now I will be up most of the night Tonight it is my legs jumping and paining but some night I can't figure out why but I go in spurts I will have days of not sleeping and then I will have several days of sleeping very well and these night of not sleeping I find my symptoms are more pronounced and very hard to function I go to see a new nuroligst in Nov, hoping he will be able to help but I am staying positive and I won't let PD, win this battle that is why my computer is my next best friend I can come on here and chat to so many nice people
I use to clean house in the middle of the night but for some reson my poor hubby didn't like it LOL can't figure that one out LOL but always hada clean house thanks for listening :):):)Pauline

[Gail]

Hi Pauline, I used to do my house cleaning in the middle of the night too, but my daughter and her husband started complaining so I stopped. The nice thing about the forum is that there is almost always someone else on it with you who can't sleep. It is too bad their is no chat function. Gail

[Pauline]

Hi Pauline, I used to do my house cleaning in the middle of the night too, but my daughter and her husband started complaining so I stopped. The nice thing about the forum is that there is almost always someone else on it with you who can't sleep. It is too bad their is no chat function. Gail

Hi Gail you are right it is to bad there is know chat function but if anyone would like to chat I am on MSN, and I love to chat I am glad I am not the only one who dose house work in the middle of the night but poor John dosn't like it he sleeps at night once in awhile he will walk the flour with me but not much thank goodness for the forum Pauline:):):)

[Dixie Pixie]

Hi! I Am New On This Site. I Do Beling To Another Sie For Parkison Patients Called Patients Like Me. It Is A Great Site. Very Much Like This Site. I Was Diagnosised With Parkinson In 2003. I Do Not Have The Tremors, But I Have The Masking Of The Face, The Illegible Handwriting, My Gait Is Off And I Tend To Stumble A Lot. I Am A Widow , With 3 Grown Children And 2 Young Grandsons. I Live In Cleveland Ohio ( I Just Gave Up My House In Knoxville Tenn. Last Fall,because My Three Children Decided It Was Time For Me To Move Near One Of Them. My Son, Hans, Lived In The In-between Area. So Here I Am, First Thing I Did Last Year Was To Fall On Blackand Break The Head Of The Humorus Off. I Haad Surgery , And Just Had Repaet Surgery To Take The Hardware Out And Take A Large Spur Off The Bone. I Am Situated In An Assitsted Living Home, But I Feel I Am Here Only Beccause I Broke My Shoulder. ALTHO, I Think My Kids Are Happy To Have me In A Place Where People Will Look After Me. Any Way This Is A Little Bit About Me. Hugs Dixie Pixie

[Pauline]

Hi! I Am New On This Site. I Do Beling To Another Sie For Parkison Patients Called Patients Like Me. It Is A Great Site. Very Much Like This Site. I Was Diagnosised With Parkinson In 2003. I Do Not Have The Tremors, But I Have The Masking Of The Face, The Illegible Handwriting, My Gait Is Off And I Tend To Stumble A Lot. I Am A Widow , With 3 Grown Children And 2 Young Grandsons. I Live In Cleveland Ohio ( I Just Gave Up My House In Knoxville Tenn. Last Fall,because My Three Children Decided It Was Time For Me To Move Near One Of Them. My Son, Hans, Lived In The In-between Area. So Here I Am, First Thing I Did Last Year Was To Fall On Blackand Break The Head Of The Humorus Off. I Haad Surgery , And Just Had Repaet Surgery To Take The Hardware Out And Take A Large Spur Off The Bone. I Am Situated In An Assitsted Living Home, But I Feel I Am Here Only Beccause I Broke My Shoulder. ALTHO, I Think My Kids Are Happy To Have me In A Place Where People Will Look After Me. Any Way This Is A Little Bit About Me. Hugs Dixie Pixie

Hi Dixie
Welcome to the forum I am Pauline and I have PD, also I think you will like this forum there are a lot of nice people here all trying to hep each other and encourage each other sorry about your shoulder hope it is getting better it is nice you can be closer to your children and your grand kids well hope to hear from you soon I love to chat take care :):):)
Pauline


http://i302.photobucket.com/albums/nn95/Paulineby2000/flob97fd28d5500_myspacebutterflyros.gif

[ltd-addition]

Hi Dixie Pixie

Im ltd-addition (because theirs only 1 of me !) I live in the UK & I am known affectionately as Young Spring Gazelle

Im 45 still work full time and am married with one son. 6yrs diagnosed with young onset parkers and wickedly funny ! Im mad as a hatter cos I love dancing in my sparkly red tutu in high heeled sling back shoes with my purple hat . (dont ask !! haa haa ) Im sending you a big hug sweetheart of welcome

[Juanita Mullin]

Welcome, Dixie Pixie,
We are very happy to have you join us. This is a cheery forum. You will like it. You will find many helpful, caring people.
Hope to see you again.
Juanita :)

[suzie Q]

hI DIXIE PIXIE

WELCOME TO THE FORUM I HOPE YOU GET LOTS OUT OF IT.I HAVE HAD P.D.5 YEARS .iLIVE IN TASMANIA ,AUSTRALIA.

I AM OFF ON HOLIDAYS FOR 2 WEEKS SO WILL TALK MORE WHEN I GET BACK GLAD YOU FOUND US

SUE

[mappergal]

Hi Dixie Pixie, I am also on PLM but I find this forum is wonderful for more personal support and encouragement. I find PLM is good for education and new views, so I use both forums as they fill different needs for me.

[susan wheatley]

hello dixie pixie
i have,nt been on the forum for a while but welcome, i was also diagnosed in 2003 and like you have no tremors, i have also started to stumble a bit and am quite dizzy a lot but i think you learn to adapt, take care susan.

[carolyn1998]

Hi Everybody! I haven't signed on in a couple of years.

My husband has been diagnosed with PD for about 4 years. He really is doing great. He had already retired from the FAA and now we do investment housing...buying and selling. He does much of the fix-up himself. I sometimes hate to see him work so hard, but on the other hand I think it is good for him. We mostly ignore this thing. Hopefully we can keep doing that!

He is in a study at Johns Hopkins so he has great care. The drug is, I think, a muscle builder that they had noticed helped PD. Not sure if he has the real thing or the placebo, but he seems to have more strength, so maybe the real thing.

We enjoy life...with 7 adult kids together there is always a challenge, however.

Most days are good. This morning was really bad. Lots of sore muscles and couldn't hardly move. I usually massage him and put muscle pain reliever on him and a heating pad. He takes some aspirin or aleve, then eventually feels better. Does anyone else have this?

He tends to shuffle his feet a little, some mumbling, but has always done some of that. With my bad ears and his quiet talking, it is quite a challenge sometimes. We just laugh about it!

So far so good. I'm sure new stuff is coming for all of you. What is the new drug I heard about in UK?

Thanks!
Carolyn

[Drew Saunders]

Hi Everybody! I haven't signed on in a couple of years.

My husband has been diagnosed with PD for about 4 years. He really is doing great. He had already retired from the FAA and now we do investment housing...buying and selling. He does much of the fix-up himself. I sometimes hate to see him work so hard, but on the other hand I think it is good for him. We mostly ignore this thing. Hopefully we can keep doing that!

He is in a study at Johns Hopkins so he has great care. The drug is, I think, a muscle builder that they had noticed helped PD. Not sure if he has the real thing or the placebo, but he seems to have more strength, so maybe the real thing.

We enjoy life...with 7 adult kids together there is always a challenge, however.

Most days are good. This morning was really bad. Lots of sore muscles and couldn't hardly move. I usually massage him and put muscle pain reliever on him and a heating pad. He takes some aspirin or aleve, then eventually feels better. Does anyone else have this?

He tends to shuffle his feet a little, some mumbling, but has always done some of that. With my bad ears and his quiet talking, it is quite a challenge sometimes. We just laugh about it!

So far so good. I'm sure new stuff is coming for all of you. What is the new drug I heard about in UK?

Thanks!
Carolyn

Hi,
I'm curious, what is the name of this muscle building drug?
By the way - welcome back,
Drew

[suzie Q]

Hi Everybody! I haven't signed on in a couple of years.

My husband has been diagnosed with PD for about 4 years. He really is doing great. He had already retired from the FAA and now we do investment housing...buying and selling. He does much of the fix-up himself. I sometimes hate to see him work so hard, but on the other hand I think it is good for him. We mostly ignore this thing. Hopefully we can keep doing that!

He is in a study at Johns Hopkins so he has great care. The drug is, I think, a muscle builder that they had noticed helped PD. Not sure if he has the real thing or the placebo, but he seems to have more strength, so maybe the real thing.

We enjoy life...with 7 adult kids together there is always a challenge, however.

Most days are good. This morning was really bad. Lots of sore muscles and couldn't hardly move. I usually massage him and put muscle pain reliever on him and a heating pad. He takes some aspirin or aleve, then eventually feels better. Does anyone else have this?

He tends to shuffle his feet a little, some mumbling, but has always done some of that. With my bad ears and his quiet talking, it is quite a challenge sometimes. We just laugh about it!



So far so good. I'm sure new stuff is coming for all of you. What is the new drug I heard about in UK?

Thanks!
Carolyn

hi Carolyn welcome to the forum .My name is sue i live in hobart tasmania and i have had P.D.5 years.hope to talk some more

sue

[jimcox]

I put some of this info on another thread but then found this one so here goes.
I live in FL, am 61 and counting and just found out a week or so ago that this lovely thing called PD landed in my head. Saw the Neurologist and when he said PD it wasn't the word I wanted to hear. Had the brain scan and when he reviewed it he only said "Unremarkable", but everybody already knew that. My wife and I were happy as we had both been to some really dark places inbetween the first appt., the scan, and diagnosis. I'm considering having that word tatooed on my arm as it's much better than a death sentence.
I'm on Mirapex and Azilect and from what I've read (thank God for the Internet) they seem to help. Also in one of the additional papers I got when I bought the book it appears that exersize is good too.
I plan on going thru the forum to find what others think, know, have found works for them, and what lies ahead for me. My wife is still in a funk which doesn't let me be there too. My 12 yr old son doesn't know yet. I plan on waiting until I have to, he is a sensative kid. He'd read up on PD and be sure I'd be in a wheelchair drooling on myself by tomorrow. Sometimes reading too much can really nail you and your attitude.
Thanks in advance for everything that I believe this forum will do for me and my family.
God Bless
Jim

[suzie Q]

Hi jim

you have come to a great place for support,help and advice ,it is nice to be able to speak to others who understand what you are going through.as a caregiver as well as the one with P.D.hope to hear from you soon

Sue

[Gail]

I put some of this info on another thread but then found this one so here goes.
I live in FL, am 61 and counting and just found out a week or so ago that this lovely thing called PD landed in my head. Saw the Neurologist and when he said PD it wasn't the word I wanted to hear. Had the brain scan and when he reviewed it he only said "Unremarkable", but everybody already knew that. My wife and I were happy as we had both been to some really dark places inbetween the first appt., the scan, and diagnosis. I'm considering having that word tatooed on my arm as it's much better than a death sentence.
I'm on Mirapex and Azilect and from what I've read (thank God for the Internet) they seem to help. Also in one of the additional papers I got when I bought the book it appears that exersize is good too.
I plan on going thru the forum to find what others think, know, have found works for them, and what lies ahead for me. My wife is still in a funk which doesn't let me be there too. My 12 yr old son doesn't know yet. I plan on waiting until I have to, he is a sensative kid. He'd read up on PD and be sure I'd be in a wheelchair drooling on myself by tomorrow. Sometimes reading too much can really nail you and your attitude.
Thanks in advance for everything that I believe this forum will do for me and my family.
God Bless
Jim
Jim. My advice is take it in a little at a time. You don't need to know everything at once. It can be overwhelming and serves no purpose. My second piece of advice is to exercise as much as possible. I go to the gym almost everyday and go hiking every chance I get. It is my salvation both mentally and physically.

Gail

[maryjane]

Hi everybody! Am so pleased to have 'discovered" Lianna and her fabulous books - and now this forum! My Dad was diagnosed with PD in 2000. He has been a fine sportsman with the enquiring mind of an engineer. He is now 74 and he is ok - at home with Mum, not too much of a tremor, main problem seems to be chronic lethargy, nocturnal restlessness, general aches and pains and a fear of falling...Mum is amazing, will do anything to help him but struggles to get the information she needs. So thank you for being here, we need you!

[Juanita Mullin]

Welcome, Maryjane! :) :)
We are glad you have joined us. It's especially interesting that we come from here and there all around the world. Our oneness comes from all being involved with Parkinsons Disease. There are those on the forum (who are far more experienced than I am) who can answer most any question.
We'll chat again.
Juanita

[Pauline]

Welcome, Maryjane! :) :)
We are glad you have joined us. It's especially interesting that we come from here and there all around the world. Our oneness comes from all being involved with Parkinsons Disease. There are those on the forum (who are far more experienced than I am) who can answer most any question.
We'll chat again.
Juanita


Hi MaryJane
WELCOME TO THE FORUM
We are all in this togeather so we try and help each other out andjust knowing your not going through this alone helps :):):)Pauline

[suzie Q]

Hi Maryjane welcome to the forum you have come to the right place ,for information and friendship we are all in this together looking to talking some more sue

[ladysaxbt]

Hi everybody - it's early in the morning in London and I have to wait until 8.45am before I take my medication, so I can barely type. I was diagnosed in 1996, and I've been lucky becuse it's only the last two years that the nightmare begins. When I'm up and running I will write more -
love to you all

Barbara (ladysaxbt)

[Margie2]

Hi everybody - it's early in the morning in London and I have to wait until 8.45am before I take my medication, so I can barely type. I was diagnosed in 1996, and I've been lucky becuse it's only the last two years that the nightmare begins. When I'm up and running I will write more -
love to you all

Barbara (ladysaxbt)

Hi and WELCOME Barbara,

It is so nice to have you join us. This is a wonderful Forum as you will soon find out for yourself. The people on here are caring, helpful and become like family. If there is anything you want to ask, share or even cry about, we will be here for you, no matter what.

Hope that after you take your meds you will soon start feeling better and be able to have a good day.

My husband has PD for five years now. I am his caregiver along with one of our sons.

So long for now. We will talk again.

Margie2

[suzie Q]

Hi everybody - it's early in the morning in London and I have to wait until 8.45am before I take my medication, so I can barely type. I was diagnosed in 1996, and I've been lucky becuse it's only the last two years that the nightmare begins. When I'm up and running I will write more -
love to you all

Barbara (ladysaxbt)

Hi Barbara welcome it is a great place to be .i am sue and i ave had p.d. for 5 years i live in Tasmania Australia looking forward to talking with u bye for now

sue

[Mary]

Hello and welcome Barbara
My name is Mary I live in Liverpool had PD since 1999 but my nightmare not begun yet.You will find this a really good Forum Margie 2 has wonderful parties, Pauline has some cracking jokes everyone is very helpful and you can read some inspiring verse.There is also a MSN site where several people talk Enjoy it;):)

Mary

[ltd-addition]

Hi Ladysaxbt

Welcome to the family of multinational, humourous, interesting and informative Parkers forum.

Ha ha I 'm assuming your musical with your user name ?

Im 45 yrs young & totally lost the plot cos my talent is dancing on stage in my tutu with my red sling back shoes !!
only kidding (I think ha ha )
I hope we can assist you by being there for you and each other
so a warm welcome from me and a genuine hello from them !

[ladysaxbt]

Dear fellow sufferers

I finally took my medication and have had a good active day, and what a lovely surprise to hear from some of you i.e. Itd what sort of name is that?-Margie 2, Suzie and Mary. Thank you so much for replying. As some of you have guessed I am a musician, saxophonist & composer and when I was diagnosed with PD 12 years ago it was a real shock.
I'm still active on the music scene, so have to go now and do some work, but I will be back
I'm back now, and I have some questions to ask everybody. In England the neurologist is God, one of the reasons being that there is a shortage. I'm fortunate enough to be with one of the top young neurologists specializing in movement disorders - he is worked off his feet, speaking at conferences all over the world but basically even he can only act according to the information given, and definitely the crisis in all this is the long term effects of the medication taken over a number of years. What is everybody's experiences with Pramipexole, Stalevo 50, 100 & 150, neupro patches and sinimet all the different strengths.
Also does everyone sleep at night?

hoping to hear some views on this
Best Wishes Ladysaxbt


Barbara

[ltd-addition]

ladysaxbt Re: Hello and welcome!

--------------------------------------------------------------------------------
Dear fellow sufferers

I finally took my medication and have had a good active day, and what a lovely surprise to hear from some of you i.e. Itd what sort of name is that?- Hi Barbara, ha ha I do get people wondering about my user name!

I'm 1 limited addition to the forum - you can never have another me ! i'm definately a 1 off Thank goodness !!

I hope you find what your looking for and your needs are met welcome

[Janice]

:)Hi Barbara and welcome my name is Janice and I live in Derbyshire . I was diagnosed July last year so just starting really. I am 43yrs young not working at the moment a very early retired Chiropodist.
So pleased and inspired that you have continued to play for so long, thats fantastic. I'm fairly new to this forum and can tell you truthfully that it has been a godsend, there are some really nice people here you've come to the right place.
please feel free to chat anytime or e-mail
Janice:)

[RIchardS]

Hi My name is Richard I was diagnosed with PD a little over 2 years ago at the age of 70. My tremors are very slight and only on my left hand. They remained the same and have not progressed any worst. I keep extremly active at the gym. I have a personal trainer three days a week and I do intenseive Cardio four times a week. I spoil myself my getting a deep tissue massasge once a week as well. My doctor is very pleased that my tremors have not increased and remain the same as when I was diagnosed. I take medication twice a day.

[ltd-addition]

My my Richard you put me to shame!
Good on you !

Ha ha and here's me thinking i'm a young Spring Gazelle

I welcome you to the forum on behalf of myself because I am a limited addition to this Parkers family (cos there is only 1 of me !!)

I work full time and up until 18 months back had 2 professions but gave up Nursing on my days off to concentrate on my other profession .

Im 45yrs and am maturing like a good bottle of red!

Dx at 38yrs old with Parkers

I'm 20yrs Married to a fantastic fella and we have our 6 yr old son who has been on this planet before.

Im delighted to welcome you Richard and I hope you find what your looking for

[Margie2]

Dear fellow sufferers

I finally took my medication and have had a good active day, and what a lovely surprise to hear from some of you i.e. Itd what sort of name is that?-Margie 2, Suzie and Mary. Thank you so much for replying. As some of you have guessed I am a musician, saxophonist & composer and when I was diagnosed with PD 12 years ago it was a real shock.
I'm still active on the music scene, so have to go now and do some work, but I will be back
I'm back now, and I have some questions to ask everybody. In England the neurologist is God, one of the reasons being that there is a shortage. I'm fortunate enough to be with one of the top young neurologists specializing in movement disorders - he is worked off his feet, speaking at conferences all over the world but basically even he can only act according to the information given, and definitely the crisis in all this is the long term effects of the medication taken over a number of years. What is everybody's experiences with Pramipexole, Stalevo 50, 100 & 150, neupro patches and sinimet all the different strengths.
Also does everyone sleep at night?

hoping to hear some views on this
Best Wishes Ladysaxbt


Barbara

Hi Barbara,
I'm happy for you that you have one of the best young neurologist in your area of the world. Having a good doctor is so important. My hubby has a very good one also, which we are so thankful for.

Tony has been on Sinemet 25/100 and has had excellent results with it. Just the last several weeks his walking is almost none existent. He is supposed to exercise more but doesn't. He says, how can I walk if my legs freeze? And we try to tell him, maybe the legs would get a little better and not freeze if you walked a little more. Anyway, he also take Requip 25mg and does well with it. Before the Requip he used to thrash about severely and actually throw punches in his sleep and never awoke from this. I almost received two black eyes (two different occasions) from these punches. Thank God he sleeps very well. It's a blessing that he richly deserves.

I am a fellow musician (retired many years). I play the accordion, small Hammond organ in our home and had played the flute for several years but no longer. While I was an active musician I worked in Business World full time. Kind of a wierd combination but it worked for me.

We have three adult children, two are married, one is single and is with us. He is a caregiver of his father along with me. We also have eight grandkids. Our home is in Queens, NY where we have lived all our married life of 46 years.

It was so good to read your post. Again, I'm glad you are here and think you will be too.

Signing off for now.

Margie:)

[suzie Q]

Hi My name is Richard I was diagnosed with PD a little over 2 years ago at the age of 70. My tremors are very slight and only on my left hand. They remained the same and have not progressed any worst. I keep extremly active at the gym. I have a personal trainer three days a week and I do intenseive Cardio four times a week. I spoil myself my getting a deep tissue massasge once a week as well. My doctor is very pleased that my tremors have not increased and remain the same as when I was diagnosed. I take medication twice a day.

Hi richard welcome to the forum My name is sue and i am from Tasmania Australia have had p.d 5 years .I am 53 Glad to hear you are doing so well i think keeping as active as we can is the trick hope to hear some mor
sue

[ladysaxbt]

Hi Janice

So sorry you had to join the PD ranks, but if it's any consolation the cure should be here within 5 - 10 years, so you don't have long to wait. The main thing is to keep yourself fit and drug free as much as poss. Because of touring, I still played 4concerts in Tokyo, a German tour, and Ronnie Scott's Jazz Club in London earlier this year, but was taking too much medication, which wasmaking me dizzy and hard to hold the saxophone. We've finally decided to come offf the road until 2010 to give me a chnce to sort the medication out. I've now cut right down and the result has been miraculous. Sorry I have to stop as it;s painful to write until I take my medication at 9am

All the Best

Barbara

[MzFrey]

Hi everyone. My name is Linda. This is my first attempt at posting here, so please bare with me...

My mom was diagnosed with PD about 4 years ago or so. And like many other posts I've read here - I believe she actually started having symptoms many years earlier. She had injured her back several years ago and ended up having 2 back surgeries. After her second surgery, she really had a hard time getting around like she did before and her recovery seemed to be very slow. She would periodically "freeze" and had difficulties getting up from a sitting position. Of course, her doctors kept telling us it was due to her back problems and more than likely she would continue to get better slowly. Well, of course she didn't. And then one day I noticed what appeared to be a slight tremor in one of her arms. When I asked her about it, she just blew it off by saying "Oh, it's just a muscle spasm or something." Of course, I knew better than that and I bugged her continuously about going to the doctor. But since my mom has always been "the rock" of our family and it's always been my dad with all the illnesses, she continued to put my dad's health issues first. Finally, after several more months went by she finally went to the doctor.

My mom is in her middle 70's now and my dad is 82. In the past 2 years she has steadily gotten worse and to be honest, I think she has probably had maybe a weeks worth of days in those 2 years where she has felt good enough and not gone straight from bed to lying on the couch for a better portion of the day. She has problems with finding the right words and she gets details mixed up often. Her balance is very unstable and she has had a couple of falls. She says that she just feels "crappy" all the time and exhausted. Her attention span is like that of a child with severe ADD and there are times when I have to remind her in order to keep on track of what she's doing. She no longer is able to drive and the only time she leaves the house is when she has a doctor’s appointment.

I am the younger of their 2 children and for the most part, I have taken on the caretaker role since my brother lives 45 mins. away - and I only live 10 mins. away.

It's very difficult for me to see my mother deteriorate like this when she has always been the glue that has held our family together. I have a very hard time dealing with the thought of her not being here one day. And in some ways, she really isn't here like she used to be.

I have tried to learn as much as possible about this terrible disease, but I often get frustrated by the lack of progress the medical field seems to have made in finding a cure or some kind of a maintenance treatment (like insulin for diabetes) PD patients could be put on that would prevent the disease from progressing like it does. Without these things, life often feels like one big, out of control roller coaster ride and you have no idea how long the ride will last, how scary the ride will get, and you just hope & pray that you can hold on tight enough to survive without going through complete hell before the ride finally comes to an end.

But my intentions weren't to make my very first post depressing and gloomy. I guess I just had to vent a little bit. (sorry)

I do have a question if anyone has an answer. Like I stated previously, my mom has basically felt "crappy" now for the past 2 years. I realize that PD is a progressive disease which means a person will only continue to get worse over time. But I just can't believe there isn't something that can be done in order for my mom to somewhat enjoy the remainder of her life. Am I completely wrong here? Or is this just the way it's going to be for her until she finally gets tired of feeling sick & tired?

If someone has an answer, I would really like to hear from you. I know that PD affects everyone differently, but does it have to be this way from now on? When I asked her doctor this question the response I got was, "Well, it's a progressive disease and she's going to have good days and bad days. Hopefully, she will have more good days than bad." (But that doesn't work for me!) If this is how the rest of her life is going to be, I’m afraid that she’s going to just give up one day. If I was in her position, I don’t think I could continue to live like that.

Anyways, if anyone can help me I'd surely appreciate it. I am happy to be here and I hope to make some new friends and learn as much about PD as I possibly can.

Oh, and Lianna…YOU ROCK!!! God bless you for what you have done for those of us that needed help and information about this terrible disease. You are an angel here on earth and I am so grateful for what you are doing and what you have done. Thank you.

[suzie Q]

Hi Linda sorrry to hear about your mum .i hope she has a good neurologist .not sure where u live i am in tasmania Australia i am 53 and have had p.d for 5 yars .yes there has been lots of bad days in between those 5 years especially the first 2 but also have had good days you just take each day at time and not think about the future .I wish i could say there things will be ok for your mum ,but i know that being positive helps and keeping busy .also excercise is important .Is there anything that she really enjoys doing .hopefully things will get better for your mum .Parkinson disease presents it self so differently in each person it is hard to predict what is in store for any of us .The forum is a great place to go for friendship and advise .i am glad that you have found us .Thjere is always someone on the forum who can offer advice or just be there to jear what u have to say .we are all in this together


i havenot really answered any of your questions because i really dont know what to say i hope things improve for your mum hope to talk soon

sue

[Gail]

Hi My name is Richard I was diagnosed with PD a little over 2 years ago at the age of 70. My tremors are very slight and only on my left hand. They remained the same and have not progressed any worst. I keep extremly active at the gym. I have a personal trainer three days a week and I do intenseive Cardio four times a week. I spoil myself my getting a deep tissue massasge once a week as well. My doctor is very pleased that my tremors have not increased and remain the same as when I was diagnosed. I take medication twice a day.

Hi Richard,

I am 53 and was diagnosed three years ago. I don't have a personal trainer, but do go to the gym 4 or 5 days a week. The massage sounds great. I may have to spoil myself with one every once in a while. what medication do you take? Sounds like you are doing well on it.

Gail

[Gail]

Dear fellow sufferers

I finally took my medication and have had a good active day, and what a lovely surprise to hear from some of you i.e. Itd what sort of name is that?-Margie 2, Suzie and Mary. Thank you so much for replying. As some of you have guessed I am a musician, saxophonist & composer and when I was diagnosed with PD 12 years ago it was a real shock.
I'm still active on the music scene, so have to go now and do some work, but I will be back
I'm back now, and I have some questions to ask everybody. In England the neurologist is God, one of the reasons being that there is a shortage. I'm fortunate enough to be with one of the top young neurologists specializing in movement disorders - he is worked off his feet, speaking at conferences all over the world but basically even he can only act according to the information given, and definitely the crisis in all this is the long term effects of the medication taken over a number of years. What is everybody's experiences with Pramipexole, Stalevo 50, 100 & 150, neupro patches and sinimet all the different strengths.
Also does everyone sleep at night?

hoping to hear some views on this
Best Wishes Ladysaxbt


Barbara

Hi Barbara,


welcome to the forum. It is almost 3AM and I am wide awake. I can't speak for everyone, but I know there are quite a few of us that don't sleep very well at night. This forum gives us something to do at night when we should be sleeping.

Gao;

[Mary]

Hi Barbara
So pleased you are keeping so active.Like you I have a super specialist and we have gradually gone up in medications him advising what I should take but allowing me decision as to when I increase.I started on Requip but it totally disagreed with me and I was swapped to Pramipexole on 0.18mgs now on 1 x 0.7mg + 2 x 0,18mg 3 times daily eventually Sinemet + was added one + half 3 times daily My specialist is delighted at how well I remain and he has recently added Azilect 1mg 1 a day this is believed to hold PD at bay for a few more years.I can still do everything albeit more slowly and don't appear to have any side effects. I appreciate I am extremely lucky but I walk a lot try not to get stressed and thank God I was referred to a good specialist.My max sleep per night is about 4 hours learned to live with it.Hope you keep as well as you are
Mary

[MzFrey]

Suzie Q:

Thanks for your words of encouragement. You're right, you didn't really answer my question. But your thoughtful words surely helped.

And you're right - everyone is different and we don't know what to expect in the future. That's really hard for me because I am the type of person that always needs to know the entire plan. From beginning to end. That way I will know what to expect. The wrong type of person to be when it comes to PD, huh?

You asked if there is anything she likes to do? I can think of a few things. She used to love working in her yard. But her balance is so bad now, she really can't do that anymore. She used to love to sew. But I really don't think she could sit straight in a chair that long anymore. And it may be that she is simply further along in this disease than I want to admit. I just wish there was some way for her to physically feel a little better so she can enjoy some things.

Thank you again for your kind words. I really do appreciate them. And I plan on stopping in here frequently to learn what I can.

Oh, and by the way...I am in California - about 30 minutes away from Sacramento.

Take care & I hope to talk to you soon also.

Linda

[ltd-addition]

Hi Mzfrey (Linda)

firstly welcome and "GOOD LASS" thats my Geordie accent and words coming out! Its due to where I live in the UK

I am delighted your Mam has such a good supportive daughter and I for one are very proud of you for asking questions.

No she shouldn't feel rough all of the time but pschologically was she prepared do you think for being diagnosed ?

Parkers is individual to everyone however some facts should be noted

Exercise and stretching off is important - your body releases natural signals to give us the feel good factor. Considering depression is one of the symptoms.

Eat the most of protein on an evening since it can reduce the absorbtion of her medication.

Play around with her medication - space it out time wise , depending on what she is taking - it makes a difference

Knowledge is power is she informed about her fears of how Parkers is affecting her- get her to keep a diary .

You will then have knowledge of what is important to find out about first .

If she has an infection or is on antibiotics these can knock out the effectiveness of the Parkers drugs. Get a full "mot " a full check up .
She may have an ear infection which is affecting her balance.
Get her eyes tested cos my eyes deteriorated by 10% in my first 3 yrs of being diagnosed .
Put an insole in the affected side of her shoe, it can serve several purposes. It is a psychological reminder to pick up her foot , plus it may help with her body's alighnment. Put half a insole in her non affected side to cushion the pad of her foot since it takes the full body weight. But trial and error as to which side

I hope these are beneficial to you and ensure she is drinking plenty.
come back to us if you have any further questions or quieries we are here to help
Good luck

[Tony D]

Hello everyone,
New to site the but old to pd diagnosed in 2004 and trying to find more people to talk to about the disease and DBS. I live in Nh with my lovely wife, and have 3 boys and two dogs. Hope this site will be fun to visit.

Tony

[suzie Q]

Hello everyone,
New to site the but old to pd diagnosed in 2004 and trying to find more people to talk to about the disease and DBS. I live in Nh with my lovely wife, and have 3 boys and two dogs. Hope this site will be fun to visit.

Tony

Hi Tony
you have come to the right place .the forum is an excellent place for advise and friendship.it is great to meet others with similar problems as yourself and be able to talk about them .everyone is nice and friendly .My name is sue and i live in australia Tasmania have had p.d 5 years i am 53 hope to talk again soon

sue

[JACKIE D. DISHAROON]

MY NAME IS JACKIE, I HAVE HAD PD FOR 6 YEARS.
MY SHAKING HAS IMPROVED SINCE I AM TAKING
RE-QUIP AND SINEMENT DAILY. I HAVE SOME PROBLEM
SLEEPING IF I DON'T TAKE 1/2 AMBIEN EACH NIGHT.
MY DOCTOR SEEMS TO THINK I AM DOING VERY WELL
AT THIS TIME. :)

[suzie Q]

Hi Jackie welcome to the forum ,my name is sue i live in Tasmania Australia.
hope you enjoy the forum it is a great place for friendship and advice .looking forward to talking to you

Sue

[ltd-addition]

Hello everyone,
New to site the but old to pd diagnosed in 2004 and trying to find more people to talk to about the disease and DBS. I live in Nh with my lovely wife, and have 3 boys and two dogs. Hope this site will be fun to visit.

Tony

Hi Tony is that Newhampshire UK or USA ?
any way pet
welcome

You are in my price bracket !! sorry ha ha I should say age bracket !!

Im 45 yrs young I have no dogs but have 2 lads in my life who lie down and love their tummy tickled !! ha ha

Shel my hubby of 20 yrs and Kieron our 6 yr old son

Its a chore but someone had to get parkers young ! obviously we were too quick running to the start line !!

speak soon

[ltd-addition]

MY NAME IS JACKIE, I HAVE HAD PD FOR 6 YEARS.
MY SHAKING HAS IMPROVED SINCE I AM TAKING
RE-QUIP AND SINEMENT DAILY. I HAVE SOME PROBLEM
SLEEPING IF I DON'T TAKE 1/2 AMBIEN EACH NIGHT.
MY DOCTOR SEEMS TO THINK I AM DOING VERY WELL
AT THIS TIME. :)

Hi Jackie

welcome

when i'm not rushing about I will chat some more in the mean time "welcome its lovely having you aboard"

[Gail]

Suzie Q:

Thanks for your words of encouragement. You're right, you didn't really answer my question. But your thoughtful words surely helped.

And you're right - everyone is different and we don't know what to expect in the future. That's really hard for me because I am the type of person that always needs to know the entire plan. From beginning to end. That way I will know what to expect. The wrong type of person to be when it comes to PD, huh?

You asked if there is anything she likes to do? I can think of a few things. She used to love working in her yard. But her balance is so bad now, she really can't do that anymore. She used to love to sew. But I really don't think she could sit straight in a chair that long anymore. And it may be that she is simply further along in this disease than I want to admit. I just wish there was some way for her to physically feel a little better so she can enjoy some things.

Thank you again for your kind words. I really do appreciate them. And I plan on stopping in here frequently to learn what I can.

Oh, and by the way...I am in California - about 30 minutes away from Sacramento.

Take care & I hope to talk to you soon also.

Linda

Hi Linda, finally someone from my time zone. I live in West Sacramento. I am 53 and was diagnosed three years ago. I don't have any answers for you either, but am here if you ever need someone to talk to. I can imagine as a care taker you would want to know everything to expect. However, I am just the opposite. I don't want to know everything that is going to happen. I don't want knowledge of the future to interfere with the present. Especially if I can't change it. I don't have my head buried in the sand either. I concentrate on today and taking care of myself so I can stay active as long as possible.

I hope you find the answers you are looking for.

Gail

[Gail]

Hello everyone,
New to site the but old to pd diagnosed in 2004 and trying to find more people to talk to about the disease and DBS. I live in Nh with my lovely wife, and have 3 boys and two dogs. Hope this site will be fun to visit.

Tony

Tony, Welcome to the forum. This site is a great place to visit. We even have parties. I live in Ca and was diagnose is 2005. I don't know anything about DBS, so can't participate in that discussion, but can participate in the fun part.


Gail

[Pauline]

hi Tony
welcome to the forum
i just got back from seeing the specialist, and she did talk about DBS surgery, but after hear about it I am dot ready to go that route yet, so am going to keep on with the medication for now. Pauline :):):)

[RIchardS]

Hi Richard,

I am 53 and was diagnosed three years ago. I don't have a personal trainer, but do go to the gym 4 or 5 days a week. The massage sounds great. I may have to spoil myself with one every once in a while. what medication do you take? Sounds like you are doing well on it.

Gail

Gail, Im on Selegiline Hydrochloride, Taken in small doses twice a day. It seems to be helping. I feel exercise has helped me as well. tremors have remained the same. I have a great positve attitude.

RichardS

[heather]

Hi My name is Richard I was diagnosed with PD a little over 2 years ago at the age of 70. My tremors are very slight and only on my left hand. They remained the same and have not progressed any worst. I keep extremly active at the gym. I have a personal trainer three days a week and I do intenseive Cardio four times a week. I spoil myself my getting a deep tissue massasge once a week as well. My doctor is very pleased that my tremors have not increased and remain the same as when I was diagnosed. I take medication twice a day.

http://i10.photobucket.com/albums/a126/maesisaf/sit%20pictures%20not%20used/Welcomerichard.gif

[heather]

Hi Barbara
So pleased you are keeping so active.Like you I have a super specialist and we have gradually gone up in medications him advising what I should take but allowing me decision as to when I increase.I started on Requip but it totally disagreed with me and I was swapped to Pramipexole on 0.18mgs now on 1 x 0.7mg + 2 x 0,18mg 3 times daily eventually Sinemet + was added one + half 3 times daily My specialist is delighted at how well I remain and he has recently added Azilect 1mg 1 a day this is believed to hold PD at bay for a few more years.I can still do everything albeit more slowly and don't appear to have any side effects. I appreciate I am extremely lucky but I walk a lot try not to get stressed and thank God I was referred to a good specialist.My max sleep per night is about 4 hours learned to live with it.Hope you keep as well as you are
Mary
Hi mary
who is your nurolagist, Jim my husband is under Doran at the Walton centre

[Suec]

Hi my name is Sue my dad has had PD for about 12 years now, in the last couple of weeks he has started hallucinating, I am actually hoping this forum may help my mum as she does not know what to do. So I thought I would check this out for her.

[ltd-addition]

Hi my name is Sue my dad has had PD for about 12 years now, in the last couple of weeks he has started hallucinating, I am actually hoping this forum may help my mum as she does not know what to do. So I thought I would check this out for her.

Hi suec
I hope I can assist you
Im 7yrs diagnosed on 14th feb 09
I have a clear understanding that its your Dad's medication that is causing the hallucinations.
Please look on my profile and email me so I can send a contact number for you to ring me if you feel comfortable.
Im in the Uk the North East

[heather]

Hi Suec
Jim my husband does this when he is starting with a infection
often a Urine one
also a few months ago, we found out he had cataracts , had them for over 12 months :mad:, his GP thinks that this could also have been some of the problem, he may have been seeing shadows, which confused him, [ he has no speech, and can;t walk ] so we didn't no he was going blind
these may be a couple of things to eliminate

[Mary]

Hi mary
who is your nurolagist, Jim my husband is under Doran at the Walton centre
Hi Heather I am also at the Walton Centre under Dr Fletcher.I have a much easier journey than you have to make as I live in Liverpool.Hope you had a lovely New Year and 2009 is a good one for us all.
Mary:)

[tomfearday]

I'm from southern IL, loking for some one to cheer me up.

My name is Tom, I was diagnosed 8 years ago when I was 50.

My main med. is Stelavo, 200 mg every three hours.
I was recently taken off of requip after being on it for about 5 years at doseage of 20 mg/ day.

I am experiencing a lot of depression and anxiety.'
Would some body have advice?


Tom

[suzie Q]

Hi Tom

Glad you have joined the forum it is great to be able to talk to others who are in similar situations You have come to the righy place to be cheeeered up When u need to talk log on there is usually someone that can answer you .You should talk to your doctor about depression and anxiety. there are medications to help you .we have all been in the same situation at some time or another.Hope this finds you feeling a little better looking forward to talking some more all the best

Sue

[Pauline]

Hi Tom WELCOME to the FORUM


http://i302.photobucket.com/albums/nn95/Paulineby2000/hugs001111111.jpg
:D:D:DPauline

[Joey]

Hello Everyone,
I am so happy this sight was created by Lianna. I think she must be one of God's special angels here on earth. I'm a retired teacher living near San Francisco. I was diagnosed with PD about a year ago. I have a few physical quirks as I like to call them but my philosophy is full steam ahead until I have to slow down.Lianna's book is incredible. I am in the process of reading it.
I have a passion for travel. In fact my husband and I leave for ll days in Hawaii in April.
Cheers,
Joey

[Patsy]

Hi Joey
Welcome to the forum, you will make lots of friends here, it is great to be able to talk to people who understand what you are going through.
I have PD for 9yrs. I do like your positive attitude it sure will help a lot. I have had a good 9yrs, with the POSITIVE attitude.

Patsy :):)

[suzie Q]

Hello Everyone,
I am so happy this sight was created by Lianna. I think she must be one of God's special angels here on earth. I'm a retired teacher living near San Francisco. I was diagnosed with PD about a year ago. I have a few physical quirks as I like to call them but my philosophy is full steam ahead until I have to slow down.Lianna's book is incredible. I am in the process of reading it.
I have a passion for travel. In fact my husband and I leave for ll days in Hawaii in April.
Cheers,
Joey


Hi Joey welcome to the forum .It is great to be acble to talk to others who understand what you are going through.i have had parkinsons disease 6 years I am 53 and married with 3 children and 1 grandson.i also have a positive attitude and can still do most things even if sometimes i am a little slower ,hope you enjoy the forum looking forward to hearing from you again soon

Sue

[Patsy]

Hi Tom
Welcome to the forum. I have PD. for 9 yrs my first medication was also Requip, which i did not find done anything for me. four yrs ago i was put on stalevo it really gave me back my life. l was also depressed, life is not all doom and gloom just because we have PD. be "Positive" that is the only thing that will help you to live a normal life, live for tomorrow, do not think of the future, take it one day at a time.
I know being POSITIVE has helped me a lot, I really enjoy this forum and i hope it helps you as much as it has helped me, knowing that there are people out there who understand what we are going through. :):):) Patsy (IRL)

[ltd-addition]

I'm from southern IL, loking for some one to cheer me up.

My name is Tom, I was diagnosed 8 years ago when I was 50.

My main med. is Stelavo, 200 mg every three hours.
I was recently taken off of requip after being on it for about 5 years at doseage of 20 mg/ day.

I am experiencing a lot of depression and anxiety.'
Would some body have advice?


Tom

Hi Tom
so your a young spring Chick just as i'm a Young Spring Gazelle
I was 38yrs old when I got my News but 7 yrs on i'm dancing still in my TuTu with red sparkly sling backs on (Only kidding )
Ask for Selegiline 5mg 1 or 2 in a morning it assists me pet

Give a shout to us lot anytime as it is beneficial for all of us

[betarnold]

My 60 yr. old husband has had PD for 4 years. He has very little tremor, but moves so slowly and has little use of his right hand and right side. He was such a sweet man and such a gentleman before. Now he talks very little and feels so weak. His severe anxiety attacks that he started with are returning. The requip stopped them initiatially but now a small increase in the requip make him sleep so much that he can't function well. Most conversations make him upset at least with me. He just wants to be left alone.
Friends say to call on them but they rarely offer much except to tell me how fast he is going down. I refuse to listen to that because I will do my best to stay upbeat. I know this is nothing yet but is is disheartening that my husband refuses to exercise or diet as his doctor orders and I will not stay on him over it.
I am so glad to have someone to listen and understand. Thanks,
Bet

[Juanita Mullin]

Hi Bet, Welcome to this forum. I am sorry to hear of your husband's difficulties. You will find on this forum friendly, helpful, caring people. I was diagnosed only a year ago so do not have much experience, but many of the ones on the forum do and you will find them helpful. Our friends on the forum become like family to us. Juanita :):)

[suzie Q]

My 60 yr. old husband has had PD for 4 years. He has very little tremor, but moves so slowly and has little use of his right hand and right side. He was such a sweet man and such a gentleman before. Now he talks very little and feels so weak. His severe anxiety attacks that he started with are returning. The requip stopped them initiatially but now a small increase in the requip make him sleep so much that he can't function well. Most conversations make him upset at least with me. He just wants to be left alone.
Friends say to call on them but they rarely offer much except to tell me how fast he is going down. I refuse to listen to that because I will do my best to stay upbeat. I know this is nothing yet but is is disheartening that my husband refuses to exercise or diet as his doctor orders and I will not stay on him over it.
I am so glad to have someone to listen and understand. Thanks,
Bet

Hi Bet

I have had pd 6 years and i am 53.it sounds like you are doing all you can for your husband.When it is all said and done it is up to him.you can sit around and feel sorry for yourself and loose what mobility you have left, or you can get in and make yourself keep going and not let this disease stop you from doing what you want in life.Has your husband talked to hjis doctor about how he feels maybe he is suffering from depression there is help out there for that.In the meantime you have to take care of yourself,This forum is a great place to come for friendship and information hope to talk again .

Sue

[heather]

http://i10.photobucket.com/albums/a126/maesisaf/sit%20pictures%20not%20used/welcomeBetr008.gif

Hi Bet, I'm Heather and a carer for Jim, who has a neurological illness that mimics PD since the age of 58
As I was reading your post, the last 12 years of our life came flashing bye

you say he was a sweet and gentle man, Jim was and still is but i have had to look past his illness, so my friend give it a go, it is there i promise.
Talk to him about the happy days, the times you had fun and laughter, this is what i found Jim needed to be reminded of at first.
Think back over the last 4 years has it been about his illness, I found this was the problem for a few years, it was both of us/family/friends trying to get our heads around it

Do you both get out at all, I find when we are at home he sleeps a lot, but once out, if it's only for hospital appointments, he stays awake and even looks around
like your husband his speech is affected, this is the most difficult part, for some time he had a speech therapist visit, who now has provided us with every day basic pictures, that Jim points at, and this has made a big difference with our communicating, so both our frustration, has lessened

He needs full care off me over the last couple years, but if i had listened to others, and not { for want of a better word} "bullied" Jim, this would have about 5 years earlier
My mother [84] when visits is ohhhh poor Jimmy, so i say poor Jimmy my a*** there are a lot worse off than him, so when he gets into his poor Jimmy mood, i tell him he can go and live with his mother-in-law :)
The other thing over the years i noticed and it was my fault, if Jim wanted any thing I would stop what I was doing, and get it him, Then one day when i was busy and tired, I told him to hang on, the look of shock on his face was a picture, so now when he says Jump, I don't ask how high, the other mood swing he gets is, "i'm not going to do what you say /ask" day
but i have found by saying to him, ok and walk away, this you will find will be hard at first, but after a few times he changed his attitude, but what you must remember that may be he doesn't want to do anything, and if he was well, that would be normal, we all have those kind of days, you no your husband best

all the above is what i found worked with us, and maybe none of it would suite you, only you no, it's all trial and error , but good luck my friend, stay strong and posative, and take care of yourself.
If i or anyone else can help please ask
I never discuss medication, as Jim's illness only mimics PD, and no PD medication works

we are and always have been open and truthful about his illness, as you read through the posts you will find we are a open book, it's the way we cope, and on hear you can talk to friends who understand what you are trying hard to cope with, and often just talking on hear does help

http://i10.photobucket.com/albums/a126/maesisaf/hugs4meyou.jpg

[Pauline]

Hi Bet Welcome to the forum you will meet a lot of nice people here and it is nice to know your not alone :):):) Pauline

[Patsy]

My 60 yr. old husband has had PD for 4 years. He has very little tremor, but moves so slowly and has little use of his right hand and right side. He was such a sweet man and such a gentleman before. Now he talks very little and feels so weak. His severe anxiety attacks that he started with are returning. The requip stopped them initiatially but now a small increase in the requip make him sleep so much that he can't function well. Most conversations make him upset at least with me. He just wants to be left alone.
Friends say to call on them but they rarely offer much except to tell me how fast he is going down. I refuse to listen to that because I will do my best to stay upbeat. I know this is nothing yet but is is disheartening that my husband refuses to exercise or diet as his doctor orders and I will not stay on him over it.
I am so glad to have someone to listen and understand. Thanks,
Bet

Hi Bet,

Welcome to the forum, I'm Patsy i have PD for 10 yrs. I can relate to everything you said about your husband, I was exactly the same, I to started off on Requip also, it did nothing for me, on my next visit to the specialist he put me on STALEVO and from day one of taking it, it gave me back my life, I would suggest you take him back to his specialist, there is lots of different medication that will help him and give him back is life.
He probably is depressed, (I was) and that is not helping him either, Stress and Anxiety, makes us with pd worse, that i know from experience. A Positive attitude does help alot.
If you have any questions? Please ask.
I can still do everthing for myself, maybe a bit slower but i still get it done.
Patsy :):):)

[betarnold]

Hi, everyone,
Thank you for your replies, My husband has a dr. appt in 2 weeks and I hope to request a change in meds. but he does not respond well to such change usually. I think the requip is a large part of his problem now. Keep hanging on.
Bet

[Pauline]

hi Bet
good luck with your hasbands Dr, appointment there are a lot of differant drugs out there I sure they will find something that will work also mention to the Dr about your husbands depression they may be able to help with that all so it is all part of the Pd

[minero]

Hello!:) Anyone out there? Hello again:

[suzie Q]

Hi minero

i see that this is your first post Welcome to the forum .My name is sue and i have had pd 6 years. I hope you enjoy the forum looking forward to hearing from you soon


Sue

[minero]

I live in Georgia, USA

[minero]

I'm shy

[minero]

Am 88 yrs old.

[suzie Q]

Hi Again














Hi again Minero nice to hear fromu again u have done well usually most people leave a message and come back tlater to read if anyone has answered .sometimes someone might see that you are online like i have just now .You can also go to msn where u can chat instantly to anyone if u look on the members list u will see my address under my name suzie q .if u dont want to do that you can just post here and someone will eventually read what u ahve writen but don't worry if not instant ,sorry hope i have explained a little aboutit for u . talk soon .


sue

[Margie2]

Hello!:) Anyone out there? Hello again:


Hello Minero,

Welcome aboard to this wonderful Forum. My name is Margie and I am caregiver to my husband who has PD for 5 years now.

Tonight is the first time I have been able to be on the Forum because I was without a computer for a long time. I had been a member since the Forum started.

You will find wonderful, true blue friends here. There will always be someone to talk with, ask questions or, or just read the other member's 'letters'.

I hope you will stay with us and see just how good it is to belong to this great Family.

Margie2

[Margie2]

[quote=suzie Q;7653]Hi Again

Hi again Minero nice to hear fromu again u have done well usually most people leave a message and come back tlater to read if anyone has answered .sometimes someone might see that you are online like i have just now .You can also go to msn where u can chat instantly to anyone if u look on the members list u will see my address under my name suzie q .if u dont want to do that you can just post here and someone will eventually read what u ahve writen but don't worry if not instant ,sorry hope i have explained a little aboutit for u . talk soon .

Hi Sue,

It's me, Margie! I'm so thankful that you are still on this Forum. I've missed you so much. One of my sons bought me a new computer and two of my sons got it up and running for me. I didn't realize how much I was attached to my computer until it crashed and could not be fixed.

May this new one last a very long time!

How have you been? Are you on any new meds? How is your Family? If you were here in my home I would give you such a hug. Hey, I'm going to give you one right now through osmosis. There! Consider yourself hugged.:D!!!

Looking forward to talking again.

With love,
Margie2

[suzie Q]

Hi Margie whata wonderful message to read i got your hug .i am so glad youa re back it has not been the same without you.hope you are keeping well and tony is ok .i have changed doctors since chatting to u last .Only because he was too far a way i had to travel by air to visit him .This new one is about 15 mins from home he has changed one lot of my tablets because i got a bit of dyskenesia with the ones i was on,and these seem to be ok for now .I have my daughter home from Scotland her partner is coming over to live here in May .Also i have some exciting news Gail who is also on the forum is coming to Tasmania to visit with me,she is coming the 22nd April and is staying with me until the 1 st May.We are bot so excited it will be lovely to meet her i have talked to her on msn and also the video camera .A few of us chat now on msn you can download it and my address is in my profile have a look and come and join us it is great to be able to have instant answers and not have to wait until someone reads your post but we all still use the forum as well because it is nice to keep in touch with everyone .Glad you have your computer back will be looking for your reply .talk soon Sue

[heather]

http://i10.photobucket.com/albums/a126/maesisaf/sit%20pictures%20not%20used/welcomem_glit_trans.gif

[Juanita Mullin]

Welcome, Minero,
I add my greeting to the others. It is good to have you with us on this forum. As the others have told you we are a family of caring people, concerned for each other. May you find this forum as much a blessing as I have. Juanita:)

[Juanita Mullin]

Hello, howdy, greetings to you, Margie 2! We have missed you so much! It is wonderful to have you back and with a new computer. I know how you felt without a computer. After you have one it seems that you can't get along without one--they are so helpful. And the fact that you couldn't keep in touch on the forum--just so grateful you are back with us. I well remember your 'party' of celebration you had last fall! It was wonderful! Looking forward to your being with us regularly. Juanita :)

[Pauline]

:)Minero
Welcome to the forum don't be shy tell us a bit about your self good luck :):):)Pauline

[Mary]

Hi Margie 2
Delighted to see you are back on line be lovely hearing from you again
Mary

[Elisabeth Jayne Baxter]

Hello this is Jayne Baxter from Corby Glen in England. I have just downloaded your books Lianne and look forward to reading them. Can't stay long as typing is hard at the moment until drugs kiick in and have had a bad night been up since 2am so am tired! Will log in again soon

[Gail]

Hello this is Jayne Baxter from Corby Glen in England. I have just downloaded your books Lianne and look forward to reading them. Can't stay long as typing is hard at the moment until drugs kiick in and have had a bad night been up since 2am so am tired! Will log in again soon

Hi Jane, Hello and welcome to the forum. I hope you find it helpful. There is a lot good information and friendship available here. I know sleep is hard to come by for many of us. You may find some helpful hints on how to get more sleep. I would offer some advice, but I am usually up at 2am as well. I am working on it though. Gail

[suzie Q]

Hi Jayne .welcome to the forum hope you enjoy it .Lots great people on here to meet look forwarsd to hearing from you again

Sue

[Margie2]

Hi Margie 2
Delighted to see you are back on line be lovely hearing from you again
Mary

Thank you Mary. It is wonderful to be back on the Forum again. How have you been? Is there something different you'd like to tell me about? I'm interested in knowing how you are.
I am still trying to catch up with all the posts and quotes. I might be a bit late in reading your posts to me...but I will get there.
Thank you again for 'talking' with me.http://i450.photobucket.com/albums/qq222/PaigeME73/smileys/smiley-1.gif?t=1239089621 (javascript:void(0);)
Have a day filled with sunshine, peace, love and goodness.

Margie:)

[heather]

http://i10.photobucket.com/albums/a126/maesisaf/sit%20pictures%20not%20used/welcomeJane.gif

hope you are feeling better
as you will see on hear we are frends from around the world, so you find lot;s of people/post's on hear all times of the day
I'm Heather, and come from Wales, so not to far from you
I am a carer for Jim my hubby, who has a illness that mimics PD, and medication doesn't work, so you will find i don't talk about medication, i leave it to the experts on hear, but anything you want to no about caring feel free to ask, there are quiet a few carers on hear, and we learn from each other
or just want to chat or laugh about anything, we are all good at that
take care and look forward to talking soon

http://i10.photobucket.com/albums/a126/maesisaf/hugs4meyou.jpg

[Patsy]

Hello this is Jayne Baxter from Corby Glen in England. I have just downloaded your books Lianne and look forward to reading them. Can't stay long as typing is hard at the moment until drugs kiick in and have had a bad night been up since 2am so am tired! Will log in again soon

Hi Jayne
Welcome to the forum, I have PD for 9yrs so on here we all know what you are going through, we have been there. Always remember you are not alone. You will find Lianna's book very helpful with lots of info, and tips. hope to hear from you soon.

Patsy :):)

[topfrog56]

Hello All!
I am new to this forum. I have enjoyed reading others' posts and it seemed like time to say "Hi!". I am 53 and was diagnosed three years ago. I'm in sunny southern California, very far from most of you, it seems. I look forward to getting to know you folks - your loving support of each other is very heart-warming.
Elizabeth

[Gail]

Hello All!
I am new to this forum. I have enjoyed reading others' posts and it seemed like time to say "Hi!". I am 53 and was diagnosed three years ago. I'm in sunny southern California, very far from most of you, it seems. I look forward to getting to know you folks - your loving support of each other is very heart-warming.
Elizabeth

Hi Elizabeth,

Welcome to the forum. I am 54 and also live in sunny California. I live in Sacramento. I know it isn't as sunny as southern California, but we do ok. I hope you get as much from the forum as I have. Gail

[Patsy]

Hello All!
I am new to this forum. I have enjoyed reading others' posts and it seemed like time to say "Hi!". I am 53 and was diagnosed three years ago. I'm in sunny southern California, very far from most of you, it seems. I look forward to getting to know you folks - your loving support of each other is very heart-warming.
Elizabeth

Hi Elizabeth
Welcome to the forum, we are all one big family from all over the world fighting the same battle. I have PD for 9yrs, try and stay positive it will help, live for today and don't worry about tomorrow, you are not alone you will make lots of friends on here.

Patsy :):)

[heather]

http://i10.photobucket.com/albums/a126/maesisaf/sit%20pictures%20not%20used/welcomeelizabeth1.gif
I'm Heather from wet Wales
But today it's sunny :eek::eek::eek:
I'm a carer for hubby Jim, who has a illness that only mimics PD, but they have all made me feel very welcome, and that i can't thank all my friends enough for.

Just jump in anywhere and ask as many questions as you want, we are a happy family, and support each other well

http://i10.photobucket.com/albums/a126/maesisaf/hugsmilesapartCHRISaf5e6.jpg

[topfrog56]

Thank you all for the warm welcome! I am very blessed to be doing very well these days. I have an angel of a neurologist and a great circle of supporters. My biggest problem is actually that I am doing so well - when I am rested and unstressed, people tend to "forget" about the PD, which is very nice, but they also overlook that if I try to do too much in response to their "forgetfulness", there is a pretty hefty price tag for me! I feel like such a whiner when I remind them that I am not who I was a few years ago. I do a pretty good job of taking care of myself and thus my current happy status, but how do I get my friends and loved ones to realize that when I feel great we should rejoice, not add more to the agenda!!?

All in all, I am a happy camper - I would not choose this path, but since I'm on it I'm determined to have a wonderful, one-day-at-a-time life. I sew, I read, I volunteer at church a little, I garden a little (trying to grow my tomatoes upside-down this year!) I make greeting cards for an online store and I work on my own website. And now I can add stopping by this forum to my list of activities! I look forward to many an encouraging conversation with you all!

-Elizabeth

[Gail]

Hi Elizabeth,

It sounds like you have a great attitude. I feel the same way. I wouldn't have chosen this path, but it is the one I have and I will make the best of it. I recently stopped working and now watch my 6 month old granddaughter twice a week. I hike on the weekends and also have my own blog. I will be going to Australia in less than two weeks to visit with Sue, who I met on this forum. Unfortunately, I am my biggest problem when it comes to not getting enough rest. My friends and family have all said to let them know when I need to slow down and I refuse to do so. Sometimes I pay the price, but I would never let them see it. So my advice is to be honest with everyone and tell them when you are doing to much. If you don't tell the, how are they going to know. Good luck with that. Gail