HI

[Pauline]

Hi every one :)I was Diagnosed in January with PD and Iam still in shock over it ,and I am scared I just don't know what to exspect I am on medication but it dosn't seem to help the shakes and I have trouble sleeping ,and I feel so alone So it would be nice to talk to people who are in the same boat:)

[heather]

Hi Pauline
welcome, where are you from?
i can only speak as a carer,and would never dream of saying i no how you feel,but i'm sure someone can help you

because my husband Jim is house bound and can't talk, i no what it's like to be lonely,and love chatting,
my spelling is a lot to be desired but i still love chatting :D:D:D,so hope to see you around

have a good day

[MargieB]

Hi Pauline,

I'm Margie. I do not have PD but my husband does. He was diagnosed three years ago. Over the three years his condition has changed. Even though I am a caregiver, I feel for you as a PD patient because I see what my husband is going through. Each patient and each case is different. Be kind to yourself and patient. I hope you have a good neurologist who will be a great help to you. Do not be afraid of asking him/her questions. That is what he/she is there for.

First of all, try to believe that you are not alone - you aren't. You will most likely make new friends through this Forum. It is so good to have a place to be able to talk to others who are going through similar circumstances.

I hope for you only the best and that your PD symptoms may be helped greatly by the right medications.

Maybe we will chat sometime. I'd like that.

Good night for now.

Margie :)

[Pauline]

Hi Margie thank you for your post it helps to hear from some one sorry about your husband how long has he had PD he is lucky to have you I don't think my husband knows what he is in for so far he won't talk about it he hide his head in the sand hopping it will go away . Iam from Canada a hour east of Toronto small Town of Roseneath bye for now:)

[Gail]

Hi every one :)I was Diagnosed in January with PD and Iam still in shock over it ,and I am scared I just don't know what to exspect I am on medication but it dosn't seem to help the shakes and I have trouble sleeping ,and I feel so alone So it would be nice to talk to people who are in the same boat:)Hi Pauline. I was diagnosed 3 years ago. I have a wonderful support system from my family and friends, but I agree, it is nice to be able to talk to people in the same boat.

[MargieB]

Hi Margie thank you for your post it helps to hear from some one sorry about your husband how long has he had PD he is lucky to have you I don't think my husband knows what he is in for so far he won't talk about it he hide his head in the sand hopping it will go away . Iam from Canada a hour east of Toronto small Town of Roseneath bye for now:)
Hi Pauline, It was so good to hear from you.

To answer your question, my husband has had PD for three years now. After his diagnosis we began to realize that he had been showing symptoms for a time but did not realize that it was PD.

My husband and I work quite well as a team but I'm the one that wants to discuss things but like your husband, mine doesn't like to talk about it much either. But if it is something that I really need to talk about concerning PD, I try gently to get him to converse with me and eventually he does. I found that being patient and not pushing too hard for him to answer me, pays off in the long run for both of us. If you haven't gotten Lianna's book, you might consider ordering it. It has many good things in it that will help not only you but might also help your husband accept your PD and be able to cope with you together.

My husband gets sad when some days are extra difficult and that makes me sad too. But then there is a break with good days. Believe me, you will have good days. If only someone could help your husband understand that PD won't go away but there are ways to cope with the symptoms. I hope for you that your husband will "take his head out of the sand" and become your strongest supporter. You need a good, strong support team and a good neurologist that will be on your side and easy to talk with and be understanding. You most likely have one already.

My husband and I have been married 46 years this coming May. We have faced many difficult times together as well as many wonderful times. PD is one of the hardest but we won't give up. Who knows...there might be a cure just a little time away. Don't ever, ever give up hope. I'm pulling for you. We'll hope together ok Pauline?

I try to take it one day at a time and sometimes just one minute at a time. I have come to realize that a positive attitude is one of the best helpers to me even if it doesn't come easy and doesn't always work. It is worth the energy.

Try listening to your favorite music. Get out in the sunshine a little every day and take a walk or sit on your front stoop if you have one. Make a cup of tea for yourself (or coffee) and read a good book (if you like to read). But do something special for yourself (no matter how small) each and every day. And may one of these suggestions if not all give you a little help and happiness.

If I start thinking negative and feeling afraid I can't do anything. So, Pauline, what do you say to trying not to feel afraid together and if we do...we'll just pick ourselves up and start all over again.

My husband and I live in Queens, New York City.

I will say 'good night' for now.

Hope to talk with you again soon.

Margie

[suzie Q]

Hi Pauline

I have been diagnosed 4 years.It was such a relief to put a name to all that i had wrong with me.But also a shock to be told that i had parkinson disease I know how you feel i was 48 ..I too had a lot of trouble sleeping for 2 years I only averaged 3 hours sleep a night.Tell your Doctor you are not sleeping , there is medication there to help you .I sleep well after being given something to help me .If you get a good night sleep you seem to cope beter with the day.I too am scared as to how this disease is going to affect me in the future.Just remember that it does not affect every one the same .I read all that I can about it .This helped me. Also it is great to have this forum, to be able to talk with others who understand what you are going through.I try to stay positive and keep myself active .

sue

[Pauline]

Hi Susie Thank you for answering my post your Right this forum is great now I don't feel so alone I am trying to stay active I try to go for a walk everyday and I try to go swimming once or twice a week the water feels good and I go fo massage once a month to keep lose so i won't stiffen up to much now the weather is getting better it help I can get out more in the winter it is had with the snow and ice but now it's spring so I can get out . I am going to ask the Doctor forsome thing to help me sleep some night I only get 2 or 3 hours and iam having trouble concetrating
but I think it"S from lack of sleep well thats all for now I hope to hear from you again have a good day Pauline:):):)

[Pauline]

Hi Pauline,

I'm Margie. I do not have PD but my husband does. He was diagnosed three years ago. Over the three years his condition has changed. Even though I am a caregiver, I feel for you as a PD patient because I see what my husband is going through. Each patient and each case is different. Be kind to yourself and patient. I hope you have a good neurologist who will be a great help to you. Do not be afraid of asking him/her questions. That is what he/she is there for.

First of all, try to believe that you are not alone - you aren't. You will most likely make new friends through this Forum. It is so good to have a place to be able to talk to others who are going through similar circumstances.

I hope for you only the best and that your PD symptoms may be helped greatly by the right medications.

Maybe we will chat sometime. I'd like that.

Good night for now.

Margie :)

:):):)Hi Margie great to hear from you it gave me such a good lift to hear from you I have Liana book it helps and I think this forum is great I have had a good day outside helping John in the garden I can't get down to do them but I do what I can and i am good at supervising that my specialty ( ha ha) John and I have been married 38 yrs we have two chidren and 2 grandkids boy 8 and a girl 17 and they are the light of my life .
well Iam going to go for now but thank you again I would really like to chat again bye for now Pauline

[Pauline]

Hi Pauline
welcome, where are you from?
i can only speak as a carer,and would never dream of saying i no how you feel,but i'm sure someone can help you

because my husband Jim is house bound and can't talk, i no what it's like to be lonely,and love chatting,
my spelling is a lot to be desired but i still love chatting :D:D:D,so hope to see you around

have a good day

Hi Heather great to hear from you Iam from Roseneath a small town in Ontario Canada Iam not a good speller either but that ok but I love to chat hope you are having a good day talk to you soon bye for now Pauline:):

[tich]

:pHi Pauline

I am also new to PD. I was diagnosed in Feb 2008. I can say I also know what you are going though. My right arm only stops shaking when I am on the computer!!!!! My sleep is so disturbured I want to sleep in the day. They tell me it takes a while for the medication to kick in.

Best of luck
Tich

[MargieB]

:):):)Hi Margie great to hear from you it gave me such a good lift to hear from you I have Liana book it helps and I think this forum is great I have had a good day outside helping John in the garden I can't get down to do them but I do what I can and i am good at supervising that my specialty ( ha ha) John and I have been married 38 yrs we have two chidren and 2 grandkids boy 8 and a girl 17 and they are the light of my life .
well Iam going to go for now but thank you again I would really like to chat again bye for now Pauline


Hi Pauline,

You made me laugh when I read "I am good at supervising that's my specialty (ha ha). Thank you for that smile. I needed it today. And I know you do more than supervise,I just know. If not in gardening in other ways.

Thank you for telling me about your family. I would like to share about mine. Tony and I have three grown children. One daughter and two sons. Our daughter is married and has two children. A boy and a girl. Our oldest son is married and has six children. Four boys and two girls. We see our daughter's family much more because they live in Queens like we do. Our oldest son and his wife live in Arlington, VA so we see them about twice a year. Our oldest grandchild is Kelli and she is 16. Her brother is Christopher and he is 11. Our grandchildren in Virginia are 13, 11, 9, 7, 5 and 2. Their names are Michael, Sophie, Vincent, John, Elena and Nicholas. Our youngest son is still at home with us. He is also helping with the caregiving of his Dad. He is a tremendous and unselfish helper.

I'm so happy for you that you got to share a nice time with your husband John in the garden. Just to share the sunshine and fresh air and be together is a good thing. Don't worry about not being able to get down and do the gardening. You will enjoy the fruits of your husband's hard work when what he planted starts to grow. I know that before the PD you were probably a gardener too. But now you can be the observer and share your joy of what John has planted for you. As you well know, hubbies like to be appreciated.

Thank you for writing. Reading your letter was a nice part of my day.

Until next time

Margie

[heather]

Hi Pauline
hope you and Hubby are having a good day
Jim loved Gardening and grew everything from veggies to flowers.Now i do my best to keep it nice, only have flowers
and had to slab it all
I got a big table and umbrella, and we sit out side every time the sun shines in Wet Wales UK , and he looks pleased , then i no i have done ok
take care and god bless

[Pauline]

[QUOTE=Margie;289]Hi Pauline, It was so good to hear from you.

To answer your question, my husband has had PD for three years now. After his diagnosis we began to realize that he had been showing symptoms for a time but did not realize that it was PD.

My husband and I work quite well as a team but I'm the one that wants to discuss things but like your husband, mine doesn't like to talk about it much either. But if it is something that I really need to talk about concerning PD, I try gently to get him to converse with me and eventually he does. I found that being patient and not pushing too hard for him to answer me, pays off in the long run for both of us. If you haven't gotten Lianna's book, you might consider ordering it. It has many good things in it that will help not only you but might also help your husband accept your PD and be able to cope with you together.

My husband gets sad when some days are extra difficult and that makes me sad too. But then there is a break with good days. Believe me, you will have good days. If only someone could help your husband understand that PD won't go away but there are ways to cope with the symptoms. I hope for you that your husband will "take his head out of the sand" and become your strongest supporter. You need a good, strong support team and a good neurologist that will be on your side and easy to talk with and be understanding. You most likely have one already.

My husband and I have been married 46 years this coming May. We have faced many difficult times together as well as many wonderful times. PD is one of the hardest but we won't give up. Who knows...there might be a cure just a little time away. Don't ever, ever give up hope. I'm pulling for you. We'll hope together ok Pauline?

I try to take it one day at a time and sometimes just one minute at a time. I have come to realize that a positive attitude is one of the best helpers to me even if it doesn't come easy and doesn't always work. It is worth the energy.

Try listening to your favorite music. Get out in the sunshine a little every day and take a walk or sit on your front stoop if you have one. Make a cup of tea for yourself (or coffee) and read a good book (if you like to read). But do something special for yourself (no matter how small) each and every day. And may one of these suggestions if not all give you a little help and happiness.

If I start thinking negative and feeling afraid I can't do anything. So, Pauline, what do you say to trying not to feel afraid together and if we do...we'll just pick ourselves up and start all over again.

My husband and I live in Queens, New York City.

I will say 'good night' for now.

Hope to talk with you again soon.

Margie[/QUOT

[Pauline]

Hi Heather hope your day is good ,It's early here IT's 10:30 AM, but so far the day is good I injoy hearing from you you are such a bright up beat person I really in joy hearing from you well have to go John just got home from the Dentist so I am going to stop and have a cup of tea whith him bye for now your friend Pauline:)

[heather]

Hi Heather hope your day is good ,It's early here IT's 10:30 AM, but so far the day is good I injoy hearing from you you are such a bright up beat person I really in joy hearing from you well have to go John just got home from the Dentist so I am going to stop and have a cup of tea whith him bye for now your friend Pauline:)

Hi Pauline
Hope your day is as good as our, we are doing well the weather is dull and wet in Wales , but the sun is shining inside
I have enjoyed your post's as well , this site is so good for us,i don't no about you, but by been able to chat on hear sure does help
Enjoy your your cupper with John, mines strong black coffee please:):):)

[Pauline]

Hi Heather :) I have the coffee on strong and black just the way you like it sun was shinning here today but cool 7 celcius sorry about the spelling I hope you understand my brain gets the shakes also (lo lo ):p but it is still nice to see the sun I think this forum is great I know I feel better just knowing there is some where to go where people understand . how is your hubby doing I read that your a nurse I was a nursing assistance worked in a nursing home for 18 years before I retired I retired to stay home because John and I adoped 2 menally chellenged boy Jamie and Stephen they are still with us and doing fine well can't think of any thing else for now but I do enjoy hearing from you bye for now your friend Pauline:):)

[Pauline]

Hi Tich it is also in my right hand and i feel it all in side of me and I feel it in my left hand Oh well we have to think possitive and make the best of it I try to go for a walk everyday weather permitting I under stand exercise is very important but I think the worst is not being able to sleep I find it hard to concentrate during the day and it is from lack of sleep but I think this forum is great and there is so many nice people here who understand what we are going through it just make me feel better and yor right I don't shake typing on the computer well that all for now I hope you write back I love to chat tell me a bit about your self where are you from bye for now Pauline

[dlmarcoux]

Hi!! my name is Doris I also have PD. I was diagnosed in May 2005. I realized that I also had symptoms long before I was diagnsoed. You are all right when you say that there are bad days and good days the bad days are when I fall which seems to be more and more recent lately. I used to garden quite a bit but gave that up a few years ago, I would like to be able to bend over and pull a couple of weeds. I do not want to go crazy and weed he whole garden. Well I have to go for now. I have to move, my back starts to hurt if I sit in one place for very long.
You all take care.
Doris

[MargieB]

Hi Pauline,

Just a 'little visit' to say hello. I hope you will have a nice day tomorrow.

Margie

[redImp]

Hi every one :)I was Diagnosed in January with PD and Iam still in shock over it ,and I am scared I just don't know what to exspect I am on medication but it dosn't seem to help the shakes and I have trouble sleeping ,and I feel so alone So it would be nice to talk to people who are in the same boat:)

Hello Pauline,
One of the first things you learn about PD is that it affects its victims in many different ways. I was diagnosed 8 or 9 years ago and found that low dosage medication, initially, appeared not to help so I stopped taking it. Eventually, I tried a number of medications until I found what suited me and controlled the worst of the symptoms for most of the waking day. Here in the UK we have (if we are lucky) Specialist PD Nurses attached to hospitals and I found my local nurse to be extremely helpful (though overworked). She has worked with my neurologist & GP to introduce/suggest changes to the medications/dosages. I also had troubles in sleeping and woke (and stayed awake) anytime after 2.30am! A small dose of Amitriptyline solved that and now I manage around 6 hours a night. If you have problems in turning over in bed (due to your PD) then another drug is available & (for me, anyway) is effective. So the message is that do contact your medics and ask them to try different medications/doses. You should bear in mind that the effectiveness of the most helpfull drugs can be expected to become less effective as the years go by.
Live for the day, Pauline, and exercise regularly. Draw up a list of things you want to do in life and start picking them off now, if you possibly can. Keep in touch with family and friends and try to socialise as best you can e.g. do you have a local PD group that you could join. And do your best not to dwell on that uncertain future we all face!!
You are not alone. Good luck.
redImp

[Pauline]

Thank you Redump I go back to the nurolgist next week So Iam hoping he will change my meds, and get under some control and get some thing to help me sleep and yes I try to keep active as possiable I try to walk every day weather permitting and I try to go swimming ! or 2 times a week you say you have had it 8 or 9 weeks are you still able to get around ? we do have a PD group here I went once it was manly old men ( not that I have anything against men lolo) but I just felt out of place But I am trying to stay possitive and look at the bright side and take one day at a time thanks again for writting hope we can chat again bye for now have a great day Pauline sorry about the spelling neaver was good but now Iam worse but now I have an excuse :):):)

[beaderpd]

Hi Pauline,
I am a new member here, but have had PD for 8 years. You cannot dwell on your disease, and believe everything you read about PD. Everyone is different, with different symptoms. I sat around for 2 years feeling sorry for myself. Finally, I joined a support group. They had speakers and refreshments, and were in the same boat as I was. Since joing that group, I have become an active advocate for PD; I helped start an exercise group. We exercise for 1/2 hour, then play chair volleyball for 1/2 hour. We do this on a weekly basis. Everyone shares their feelings, drug upsets, what is going right for them and what is going wrong. The main thing that has helped me is my jewelry hobby. When I create jewelry, my mind is on that. Maybe I am saving some dopamine, who knows? If you are a creative person or just an interested party, a neat website to visit is www.PDCreativity.org, There you will find awesome art and creativity made by PLWP.
beaderpd

[Pauline]

Hi Margie I sent you a post but I don't know if you will get it and I am to tired to write again it is under the CoQ10 Garysimmons forum let me know if you find it but any way thinking about you My friend smiles your way :):):)Pauline

[unborn]

can't sleep again,i have those nights--but when i do sleep, its great--even with my vivid dreams.

i think Neurophy and spinal canal stenosis is worse than PD yet. I try to stay above it all, did all work for 54 years,,, now husband has to do it all. It sure has changed him for the better. Thank God he is healthy at 79, i am 74,

Thanks for all imput!!!

Ruth

[Pauline]

Thank you for the input Your right we can't dwell on our PD but at times it is hard My hobby is stained glass and when I concentrate on my glass my symptoms aren't as bad and I do love working on my glass I can get so involved I forget everything for awhile thank you for the web site it is great I have done a lot of crafts but jewellery is sometng I haven't got into but it looks interesting I have tried to join our group here but it wasn't for me but I try to keep active I walk and swim I can't walk far due to a very bad back and arthritis osteo prosiest I still keep my self moving hope to hear from you again smiles your way:):):):Pauline

[heather]

Hi Pauline
hope you are on a good day
You are a inspiration not only for PD people but use carers
I was thinking [as i do:)] that may be we could open a section
in hobbies where we could post picks of our hobbies, you could post your glass, someone said they painted , my effort would have to be my Garden :rolleyes: i'm sure that there are many more who have a hobby,we would love to hear about
just a thought
I would be willing to put it together , with information on how to post them on hear

[ltd-addition]

Hi Pauline
hope you are on a good day
You are a inspiration not only for PD people but use carers
I was thinking [as i do:)] that may be we could open a section
in hobbies where we could post picks of our hobbies, you could post your glass, someone said they painted , my effort would have to be my Garden :rolleyes: i'm sure that there are many more who have a hobby,we would love to hear about
just a thought
I would be willing to put it together , with information on how to post them on hear

Great idea a hobby site whereby you can see how talented we all are (My Dad said if I don't blow my own trumpit no one will blow it for me)
Im into dried & silk floral/flower arrangements
Hey Heather your an Angel for us on earth = Great ideas xx

[Pauline]

Hi Heather what a great Idea I love it I think there would be a lot of people with all different kinds of hobbies I think it would create a lot of interest, Thank you for what you said you are my inspiration , had a good time at the concert but I was really shaky couldn't even sign my name or cut my meat but John did that for me very discretely he can be such a gem at times, but any way didn't let it stop me still had a good time smiles your way:):):) Pauline

[heather]

Hi Both
hope you are well

So glad you had a good time Pauline hope you behaved :D
i'll set it up over the next few days,in the hobbies section
so get those cameras clicking want to see some pictures :p
take care both

[MargieB]

Hi Margie I sent you a post but I don't know if you will get it and I am to tired to write again it is under the CoQ10 Garysimmons forum let me know if you find it but any way thinking about you My friend smiles your way :Pauline

Dear Pauline,

Besides my computer being out and then a few glitches I've been pulling my hair out :mad: (OUCH!) because I couldn't do anything on the computer. My son Chris had fixed it and then it decided to throw in another glitch, but now it is fixed, I hope. So here I am back again :D.

Hope you have been enjoying good days. How was the concert? Did you boogy? I'm just hoping you and John had a very nice evening.

I am going to make this note short and will check your letter to me under the C0Q10 GarySimmons Forum.

Talk with you soon.

Love,
Margie

[Pauline]

Well I do hope your computer is feeling better we miss you when we don't see you on line I don't know what I would do without the computer probably drive John crazy (lolo)yes we had such a good time I really boogied (lolo) as far as my shakes go it was a good day I don't know why when I go out they just seem to get worse but John was a real gem he cut my meat up for me very discreetly but it didn't stop me I still had a good time smiles your way :):):)Pauline

[MargieB]

Well I do hope your computer is feeling better we miss you when we don't see you on line I don't know what I would do without the computer probably drive John crazy (lolo)yes we had such a good time I really boogied (lolo) as far as my shakes go it was a good day I don't know why when I go out they just seem to get worse but John was a real gem he cut my meat up for me very discreetly but it didn't stop me I still had a good time smiles your way :):):)Pauline

Yes, my computer is definitely feeling better. Chris installed something call Broadband and a little 7 inch high1 1/2 inch wide box I don't what it is called, but it seems to have done the trick. I threatened my computer with 4 tablespoons of castor oil if it didn't behave ;) but Chris' remedy pleased me
and the computer. Here's to Computer World!

I was so delighted to hear that you had a good time on your night out with John. Probably, as when Tony goes out his symptoms get worse because I think he gets nervous being out of his home element.

May you and John share a very nice day tomorrow.

With love,

Margie

[Pauline]

Castor oil would scare any thing or any one into behaving thank goodness for computers it brings us all closer ,not having a good day but tomorrow will be better going to have a nap:):):)Pauline

[MargieB]

Castor oil would scare any thing or any one into behaving thank goodness for computers it brings us all closer ,not having a good day but tomorrow will be better going to have a nap:):)Pauline



Hi Pauline,

:( It saddens me that you are having a bad day. After I leave the Forum I am going to say a special prayer for you that you will have a good day tomorrow. Maybe even after you awake from your nap. I hope so dear friend.

Just putting the word "Castor Oil" on my screen makes my computer sit to attention. Guess I won this battle!

I agree with you that having a computer is so good. It does bring us all closer. It's the next best thing to actually having you as a next door neighbor. We can visit each other whenever the time allows.

Chat with you soon.

With love,

Margie

[heather]

Hi Pauline
sorry you not having a good day
hope this will help
http://i10.photobucket.com/albums/a126/maesisaf/sit%20pictures%20not%20used/cf09f32c.gif

[jane]

can't sleep again,i have those nights--but when i do sleep, its great--even with my vivid dreams.

i think Neurophy and spinal canal stenosis is worse than PD yet. I try to stay above it all, did all work for 54 years,,, now husband has to do it all. It sure has changed him for the better. Thank God he is healthy at 79, i am 74,

Thanks for all imput!!!

Ruth

this is Jane
Just a quick note I had difficulty sleeping (have had PD for 12 years) and 6 months ago my occupational therapist reccommended an alectric profile bed and since Sociai services gave me one i have had much better nights Jane

[Pauline]

Hi Jane My hubby bought me a electric bed at christmas and l really like it but on those night that l can't sleep nothing seems to help Pauline

[Pauline]

Well had a tough day yesterday after seeing the Neurologist but I am not going to let him get me down today is a beautiful day and am going to enjoy it hope everyone here has a good day :):):)Pauline

[heather]

Hi Pauline
So glad you have got back up on the positive ladder
just remember their only one God, and he will see you through this patch,with a lot of help from your friends
my thought's and prayers are with you and Tony

http://i10.photobucket.com/albums/a126/maesisaf/44643bac.jpg

[Pauline]

Thank you once again you have made me smile and yes I feel much more positive I have made up my mind I am not going to listen to these Dr any more they are to negative got your E mail Address and tried to send the pictures but got a notification back saying it did not go through for some reason I will put my Email address on my profile and you try to see if it your will go through to me :):):)Pauline

[ltd-addition]

can't sleep again,i have those nights--but when i do sleep, its great--even with my vivid dreams.

i think Neurophy and spinal canal stenosis is worse than PD yet. I try to stay above it all, did all work for 54 years,,, now husband has to do it all. It sure has changed him for the better. Thank God he is healthy at 79, i am 74,

Thanks for all imput!!!

Ruth

Just wondering how you are Ruth