Stages of disease

[maryg]

What stage of disease is the worst that can happen? How do I know what stage I am at now? Until today after reading this forum I had never even thought about stages. I think I am still not really dealing with what the future is going to hold for me. It may be a good thing that I don't! Maryg. :eek:

[MichaelWayne]

Hi Maryg. This is the very thing that I am having the most trouble wrapping my head around. Stage 5 is what you would rather not know about. At this stage you are bedridden and demented. What I don't know is whether every person with PD reaches this stage, and of course the length of time it takes to get to this stage varies wildly from person to person.

[heather]

I have heard there are stages with PD
but have never been able to find these stages, or how many there are
does anyone no them

[suzie Q]

Heather
There are stages of parkinson disease, i have read about somewhere on the internet,but not sure how i came across it, maybe if you google stages of parkinson disease. Worth a try

Sue

[heather]

Thanks sue i will try, and if find it post it on hear

[heather]

i have found this link on the stages of PD , hope it will be of some help


www.webmd.com/parkinsons-disease/parkinsons-stages

[Pauline]

Hi Maryg I am in stage one I guess and I am having troube dealing with this stage so I don't want to know what is the worst Pauline

[Gail]

Hi Maryg I am in stage one I guess and I am having troube dealing with this stage so I don't want to know what is the worst Pauline
I agree. I am dealing as well as can be expected. I worry that knowing what is ahead for me will make it harder to cope now.

[heather]

Hi Maryg. This is the very thing that I am having the most trouble wrapping my head around. Stage 5 is what you would rather not know about. At this stage you are bedridden and demented. What I don't know is whether every person with PD reaches this stage, and of course the length of time it takes to get to this stage varies wildly from person to person.

Hi MichaelWayne
My Husband is in stage five and has been for approx 5 years
it's just another stage you learn to live with, you will a just like you will through all the other stages, as long as you keep positive, keep smiling and laughing don't forget a good morning and night hug a kiss is better than any medicine,and you can't over dose on it :);)
we have had no support from friends , but thanks to Leanna
we have all the friends and support we need on hear

[MichaelWayne]

Hi Heather. I assume that I was correct about a persons condition in stage 5, since you have first hand experience, and since you offered no contradiction. I can admire your upbeat attitude, but I am thinking that I never want to reach this stage, and will make alternitive plans.

[grldnklly]

Hi Heather,
I was relieved to read your comment about no support from friends. I though it was only us that happened to! We have some good friends who no matter what are there for us, but a lot of people I would have called friends just don't want to know. They will phone me and ask how my father is, but they don't visit him. As far as I am concerned, that is thier problem - they don't know what they are missing. Under all the side effects of parkinsons and the medication my father is still the same man. I find that even some family members can't cope. I just think it is really sad. I pray for them as they don't know what is in front of them. My father was a very health concious man who ran his last full marathon when he was 63 years old. None of us ever thought he would end up the way he has. After saying all this I can honestly say that because of my father having parkinsons him and other members of the family have been able to spend time with him that we might not otherwise have spent. There's good and bad in every situation. God bless

[heather]

Hi Heather. I assume that I was correct about a persons condition in stage 5, since you have first hand experience, and since you offered no contradiction. I can admire your upbeat attitude, but I am thinking that I never want to reach this stage, and will make alternitive plans.

Hi Michael Wayne

not exactly right
yes Jim needs full care off me, but dementia is a big NO NO , he understands every single thing that goes on and i keep him informed of what goes on both in our lives and the up keep of the home, he helps me decide on all issues including his needs
though he has lost his speech, there are lot's of ways of communicating , what's the saying more than one way of skin a cat :)
Each stage is different,and it depends what you make of it, is how you cope with it, and what support you have,we have not had a lot of support { thanks to this site I feel we now have it } but decided from the start, i would research it , discuss my findings, set our goals, then shelf it and let the dust collect ,
So far we are on track , the dust is getting thicker by the years
I think that by knowing what to expect, was our way of coping ,but that's not for everyone
Are you Married/Partner Michael if so put yourself in their place, I wouldn't wish this illness on no one, but we have got it, and IT HAS TO LIVE WITH US .Over the years life has become very preciouses to us,and every second we make count,we make plans like everyone else,we don't just live from day to day, that to us means it is taking over, if plans don't work,who is to say it would have worked anyway

what i'm trying to say is you no the stages, now forget them how long it takes to go from one to the other, depends on you, being POSITIVE,and as stress free as possible, go out enjoy life,look around there are lot's in stage five who have not got PD please please,don't let it take your life away, curse like I have over the years
hope this makes seance,my spelling etc is like PD stinks , but it doesn't stop me coming on hear to chat,if you need to no anything please ask, i have made mine/our lives a open book, it's much easier that way
Take care
God Bless

[heather]

Hi Heather,
I was relieved to read your comment about no support from friends. I though it was only us that happened to! We have some good friends who no matter what are there for us, but a lot of people I would have called friends just don't want to know. They will phone me and ask how my father is, but they don't visit him. As far as I am concerned, that is thier problem - they don't know what they are missing. Under all the side effects of parkinsons and the medication my father is still the same man. I find that even some family members can't cope. I just think it is really sad. I pray for them as they don't know what is in front of them. My father was a very health concious man who ran his last full marathon when he was 63 years old. None of us ever thought he would end up the way he has. After saying all this I can honestly say that because of my father having parkinsons him and other members of the family have been able to spend time with him that we might not otherwise have spent. There's good and bad in every situation. God bless

Hi grldnklly
Hope you are all well
you dad ,ran a marathon at 63 wow good on him , now you will have to walk it with him :)
I have learnt to laugh when i hear the words "i'm going out/meet with my Friends" that's what we did, like you said they soon drop off , not one phones even, Jim's family don't even phone, " they have busy lives haa haa " his one sister and brother he hasn't seen since his mothers funeral 8years ago another 2 years last Xmas, one sister came dayafterhis65th birthday November last year , and said we will see you before Xmas but she didn't say which year, one sister-in-law rang about 2 months ago,and said she had been busy, [ they all live with in a 8mile radius
i have learnt over the years to not let it bother me, we have each other and our children,my one brother is a Gem and my mum rings , they are the only ones we have to say thank you to

like you said underneath it's still your dad and always will be
The only thing i can thank PD for is it has brought Jim and i much closer together, and we have valued or love and lives, and not just taken it all for grant age as I think you do as you get older

There sure is good and bad in every situation ,i treasure the good and put the bad throw shredder,like I have put my favourite saying in my siggy at the bottom

Take care , Give dad a hug off me, he is very lucky to have a daughter like you

God bless

[bruce]

My wife and I have discussed the stages. I am between stage 2 and 3. I am progressively having to make adjustments to my life style. I sometimes get depressed, but then I think of how much worse things could be verse what I still have and I feel better. Attitude is essential. I find being defiant to the desiese helpful to me mentally. I find being somewhat dependant on others very uncomfortable, but I have to accept this stage and go on. I have made my wishes known that I do not want to go through the humiliation of stage 5 and have to watch my family suffer. This mat be selfish, but I think its the best route. I love having this forum!!!!!!!!!!bruce

[bruce]

Heather, I am amazed that I only really have one friend left and he calls less and less. My family has no contact with me except 2 aunts. I love it when people ask how are you but they really dont want to hear. I dewpend on the mutual support of my life long friend and love, my wife. My children,except for my son, are very loving and try to understand but they still expect Dad to be the same. The Dad that could "fix" everything. I have come to the realization that my wife and have to do what is best for us. We ,none of us, know how much quality time we have left; so we plan on enjoying every moment together!!!! bruce

[heather]

Heather, I am amazed that I only really have one friend left and he calls less and less. My family has no contact with me except 2 aunts. I love it when people ask how are you but they really dont want to hear. I dewpend on the mutual support of my life long friend and love, my wife. My children,except for my son, are very loving and try to understand but they still expect Dad to be the same. The Dad that could "fix" everything. I have come to the realization thatmy wife and have to do what is best for us. We ,none of us, know how much quality time we have left; so we plan on enjoying every moment together!!!! bruce

Hi Bruce
hope you are on a good one,
i have found so many new friends on the internet, and even more on hear
who needs family,i found they give pity to your face,and forget you once they leave
Jim did everything around the house, and was known as "Jim will fix it" Jack of all trades master of none :),this we both miss , but i still ask him can i do it this way or that way,and he so feels involved .
I realizes along time ago we are in this together, and we like you have to put us first, i am a qualified nurse, but at home i am my loves carer and i threw the book away, and things got so much better
Though Jim is in what they call stage5, other than he needs more care off me he is no different, he understands everything, and though it take as a little longer, we make all
decisions together.
I often wonder what do we mean by quality of life, our life is great ,much better than a lot of people i meet
who knows what's around the corner for any one, like you
we enjoy every moment we have, take the bad with the good ,if we get a knock down, we get up, dust our selves down and just continue

Take care bruce and God bless and guide you both

[Drew Saunders]

Hi Heather. I assume that I was correct about a persons condition in stage 5, since you have first hand experience, and since you offered no contradiction. I can admire your upbeat attitude, but I am thinking that I never want to reach this stage, and will make alternitive plans.

Michael, I think you are looking at this from the wrong end of the spectrum. 1. Everyone who has PD is affected in different ways. 2. You may never get any worse than stage one. 3. Live for today and try and enjoy every day. Laughter is one powerful medication. Having a loving and caring relationship is another powerful medication. Worrying about the future is good time wasted. Being positive is very important. I was diagnosed 8 years ago but think I have had the condition about 10/11 years. I take 9 sinemet/day, 1 azilent/day which keeps my tremors under control as long as I remember to take my meds on time. I have a timer to remind me. I cannot walk very far because my right foot is Dystonic (twists and creates cramps) so I bought a four wheel mobility scooter which gives me the mobiltiy I require. I have lost some so called friends when they found out what I had (I am open about it and tell people when I think it is necessary or if they enquire) but conversely I have some wonderful new true friends and life is good - very good. So, to paraphrase the situation, you can fear for something that may not happen and drive yourself nuts or get on with what you have now and enjoy yourself. The choice is yours. I have made my choice. :):):)

[heather]

Hi Drew

Thank you for that as i said somewhere,i can only post from a carers point of view,and you have the experience first hand of PD ,


this statement you made I don't think can be emphasise enough

"Worrying about the future is good time wasted. Being positive is very important".

[MichaelWayne]

Thanks Drew and Heather

I know that I must get my head in a better place about this thing. Most of the time it is. My work as a carpenter / contractor is my mental theapy, along with laughing at stupid sit coms on TV. I live alone, however. Have for sometime. Except for occasional return engagements from my young adult children (1 boy 1girl ).

I haven't heard about people who never progress beyond stage 1 Drew. Dare I hope ! What I keep hearing is about is people who have out progessed me in less time than I have shown symptoms (2 years or so). My tremors are getting hard to hide, balance is off, right hand dexterity is shot ( I'm a lefty) and my right leg is getting lazy. I have resisted the need for meds so far. The environment I work in is dangerous enough for people not on meds. No neuro MD is locally available to me either. I' going to learn what I can about meds from this and other resourses, and tell my GP what to prescibe me, that is of course when I feel I must get on drugs to function. Oh yes ! NO INSURANCE !

A person asked in this forum about exposure to solvents. In the construction industry you are exposed to a buffet of toxic substances, regardless of protective measures. I don't peronally know of any other PD victims though. The thing about people with PD is that they tend to disappear from public sight, and not long after, forgotten about.

There is a lot I would like to discuss , but typing takes forever. Let's keep up the dialog. Has it occured to anyone else that a valuable data base of symptoms and meds could be compiled from the experiences of the people in this forum. Neurologist from the world over could add this info to their own limited resourses.

[heather]

Thanks Drew and Heather

I know that I must get my head in a better place about this thing. Most of the time it is. My work as a carpenter / contractor is my mental theapy, along with laughing at stupid sit coms on TV. I live alone, however. Have for sometime. Except for occasional return engagements from my young adult children (1 boy 1girl ).

I haven't heard about people who never progress beyond stage 1 Drew. Dare I hope ! What I keep hearing is about is people who have out progessed me in less time than I have shown symptoms (2 years or so). My tremors are getting hard to hide, balance is off, right hand dexterity is shot ( I'm a lefty) and my right leg is getting lazy. I have resisted the need for meds so far. The environment I work in is dangerous enough for people not on meds. No neuro MD is locally available to me either. I' going to learn what I can about meds from this and other resourses, and tell my GP what to prescibe me, that is of course when I feel I must get on drugs to function. Oh yes ! NO INSURANCE !

A person asked in this forum about exposure to solvents. In the construction industry you are exposed to a buffet of toxic substances, regardless of protective measures. I don't peronally know of any other PD victims though. The thing about people with PD is that they tend to disappear from public sight, and not long after, forgotten about.

There is a lot I would like to discuss , but typing takes forever. Let's keep up the dialog. Has it occured to anyone else that a valuable data base of symptoms and meds could be compiled from the experiences of the people in this forum. Neurologist from the world over could add this info to their own limited resourses.

Hi Michael
Two good minds think alike
i have just opened a topic on Medication ,uses and side effect's
Have you heard of Via Voice [hope that's what it's called ] it's like a dicta phone, only it types on screen what you say , it may be worth looking into

[susan wheatley]

i am in the first stage of pd and try not to think to much about what the future holds because i think what ever will be will be.

[Pauline]

I agree stage 5 is scarie but hope fuly it will take along time to get there and I am not going there with out a fight so don't make alternative plans yet keep fighting we can't give up Pauline

[tinkerbell]

hi,
i think i am on stage 1, we also have no help from family or friends, they think because you can walk around the house you do not need help, i think they do not understand, at least i have my hubbie.
tinkerbell

[Drew Saunders]

Thanks Drew and Heather

I know that I must get my head in a better place about this thing. Most of the time it is. My work as a carpenter / contractor is my mental theapy, along with laughing at stupid sit coms on TV. I live alone, however. Have for sometime. Except for occasional return engagements from my young adult children (1 boy 1girl ).

I haven't heard about people who never progress beyond stage 1 Drew. Dare I hope ! What I keep hearing is about is people who have out progessed me in less time than I have shown symptoms (2 years or so). My tremors are getting hard to hide, balance is off, right hand dexterity is shot ( I'm a lefty) and my right leg is getting lazy. I have resisted the need for meds so far. The environment I work in is dangerous enough for people not on meds. No neuro MD is locally available to me either. I' going to learn what I can about meds from this and other resourses, and tell my GP what to prescibe me, that is of course when I feel I must get on drugs to function. Oh yes ! NO INSURANCE !

A person asked in this forum about exposure to solvents. In the construction industry you are exposed to a buffet of toxic substances, regardless of protective measures. I don't peronally know of any other PD victims though. The thing about people with PD is that they tend to disappear from public sight, and not long after, forgotten about.

There is a lot I would like to discuss , but typing takes forever. Let's keep up the dialog. Has it occured to anyone else that a valuable data base of symptoms and meds could be compiled from the experiences of the people in this forum. Neurologist from the world over could add this info to their own limited resourses.

Hi Michael, Sorry if I seemed a bit hard on you but it was said with the best of intentions. PD affects everyone differently but I am the living proof that after 11ish years things are pretty much ok. I do need meds and am fortunate to live in UK and being over 60 my meds are free unlike USA or other countries. If you can manage without the meds then fine. Just do not let your symptoms get on top of you. I know that is easy to say but being positive is very important as is a sense of humour. I wish you well buddy and come back to me anytime. I spend a lot of time on this site. Get out and about in your free time and enjoy life as best you can. Forget the future, live for today. take care.

[MargieB]

hi,
i think i am on stage 1, we also have no help from family or friends, they think because you can walk around the house you do not need help, i think they do not understand, at least i have my hubbie.
tinkerbell

Hi Tinkerbell, We have family also. Three adult children. Two are married and have kids. Our single son still lives at home and helps a great deal. But you are so right the other family members (our oldest son included lives far away. He has 6 children a handful yes.) but he as well as so many others don't understand what my husband is going through with the PD. Our son Chris who is at home with us is the only one besides us two who knows and understands.

But we, your friends on the Forum understand Tinkerbell. You always have us by your side. It's not the same as being able to visit in your home, but I've gotten much consolation being on this Forum and hearing from some of the people. They are starting to become good friends.

I'm glad for you that you have your hubby. Being positive and thinking good thoughts and enjoying funny shows on television help Tony a lot. He loves to watch mysteries and tries to figure them out before the investigator does ;).

Try not to let the PD get you down too much. Who knows, there might be a cure just around the corner. It is very possible, so let's keep hoping TOGETHER.

Margie

[tinkerbell]

hi margie,

thanks for that if i didn't have the forum i would be lost.

tinkerbell

[suzie Q]

Tnkerbell.

Sometimes I Think That Family Do Not Want To Know Not Because They Don't Care, Because They Don't Know How To Handle It.
I Had That Problem With My Daughters They Did Not Want To Know About It. I Was 49 When Diagnosed, But Was Really Unwell For 2 Years Previous .i Am 53 Now .last Year They Both Came To Me And Said How Sorry They Were For Not Understanding About It.

While I Was In Hospital For 2 Weks At A Parkinson Clinic That I Attend When My Medication Needs Adjusting, They Phoned Our Local Parkinson Group And Asked For Help And Support So They Could Understand It.they Didn't Tell Me This Unbeknowns To Them The Person They Phoned Was A Friend That I Met Through The Local Parkinson Group And She Told Me I Only Found This Out Last Week .

It Made Me Feel So Much Better That The Girls Had Done That And Now I Know That They Are Trying To Understand All About It It Is Hard For Y Family's As Well My Girls Just Wanted Their Old Mother Back.
She Is Here Just A Little Slower But Can Do Most Things

Sue

[Pauline]

hi my hubby is so good at some thing but he won't talk about it l thought he was just trying to ignore it but maybe it is he just doesn't understand about PD and doesnt know what to say , l don't know what l would do if l didn't have this forum and the people here l know they understand thank you my friends Pauline

[jane]

Hi Drew

Thank you for that as i said somewhere,i can only post from a carers point of view,and you have the experience first hand of PD ,


this statement you made I don't think can be emphasise enough

"Worrying about the future is good time wasted. Being positive is very important".

Hi this is Jane I have had Pd for about 12 years and live on my own with with my friend Daisy May a small mongrel dog who rules the roost !!!I had her before I was diagnosed with Pd otheerwise wouldnt have got a dog she was a rescue dog
I cant take her out but have a team of dogwalkers which is great
I didnt start to write to tell you about Daisy but how I cope My daughter is in Australia ndd my son in USA but i have a good circle of friends andnnetwork of support here in Portsmouth
Meanwhile I know that PD affects everyone differently so that is why no book tells it all I suppose we have to find our way and this forum helps so much in thatI did not know there were stages and I tend to think there are 2 people here me and that other person who has Parkinsons!!!. I have no idea how the disease will progress and think anywayI may have gone before that meanwhile I'll go on being me and look for the good things we can still help others even if we can only listen
sorry I have rambled on Nothing concrete butthe contact is great Do you remember the end of the Morecombe and Wise show? when the large lady singer came to the curtains ,flung her arms open and said "and I love you all"
Have a nice day Jane

[heather]

Tnkerbell.

Sometimes I Think That Family Do Not Want To Know Not Because They Don't Care, Because They Don't Know How To Handle It.
I Had That Problem With My Daughters They Did Not Want To Know About It. I Was 49 When Diagnosed, But Was Really Unwell For 2 Years Previous .i Am 53 Now .last Year They Both Came To Me And Said How Sorry They Were For Not Understanding About It.

While I Was In Hospital For 2 Weks At A Parkinson Clinic That I Attend When My Medication Needs Adjusting, They Phoned Our Local Parkinson Group And Asked For Help And Support So They Could Understand It.they Didn't Tell Me This Unbeknowns To Them The Person They Phoned Was A Friend That I Met Through The Local Parkinson Group And She Told Me I Only Found This Out Last Week .

It Made Me Feel So Much Better That The Girls Had Done That And Now I Know That They Are Trying To Understand All About It It Is Hard For Y Family's As Well My Girls Just Wanted Their Old Mother Back.
She Is Here Just A Little Slower But Can Do Most Things

Sue
Hi Sue
for want of a better word, what a lovely story,
My son always asks how are you but never how are you coping , but that's Ok he is always there if i need him, but daughter is awhare of what is going on.

I think this sums us up

"They Don't Know How To Handle It.
I Had That Problem With My Daughters They Did Not Want To Know About It. I Was 49 When Diagnosed, But Was Really Unwell For 2 Years Previous .i Am 53 Now .last Year They Both Came To Me And Said How Sorry They Were For Not Understanding About It."

you where 49,[so young] so they where late 20 maybe early 30,
I had a job to come to terms/understand it and Jim was 54,and i was 48

Thank you for sharing this, i'm sure it will help a lot, like it has helped me to realise all /most family's have to go through this stage, but you have shown how it can be done,
hope that makes sense :confused:

[suzie Q]

Heather my Daughters are 23. 25. 28 .They are great now .although I know that they really don't like talking about it ,now that I know that they understand that means everything to me.

Sue

[heather]

Hi SuzieQ

So your daughters where quiet young bless them
now you have it sorted,you can do like i do in my minds eye,put it on a shelf ,let the dust collect, it's just another chapter,in our book of life.
take care and keep well

[suzie Q]

Thank you Heather it is so lovely that you are part of our forum.
you are special

Sue

[heather]

Hi Suzie Q
no thank you all, for allowing me to be part of this circle of new friends,i an honoured to be hear
http://i10.photobucket.com/albums/a126/maesisaf/friendsglobe.gif

[Bellinghamster]

My husband is in stage 5 of PD -- and has been for the past 3 years. He is in a wheelchair, but is not bedridden or demented -- although his short term memory is slipping. Douglas requires assistance with bathing, eating, dressing, getting from point a to point b -- just another part of this illness that we are learning to understand together. Unfortunately for our situation Douglas is now in a long-term care facility. He requires 24/7 assistance and I still work full time. Not the easiest thing to do -- having to place your partner and best friend in "the home" but what other options do we have? Each stage is different for every person. Douglas has had PD for 17 years now -- but we haven't given up hope!

[heather]

My husband is in stage 5 of PD -- and has been for the past 3 years. He is in a wheelchair, but is not bedridden or demented -- although his short term memory is slipping. Douglas requires assistance with bathing, eating, dressing, getting from point a to point b -- just another part of this illness that we are learning to understand together. Unfortunately for our situation Douglas is now in a long-term care facility. He requires 24/7 assistance and I still work full time. Not the easiest thing to do -- having to place your partner and best friend in "the home" but what other options do we have? Each stage is different for every person. Douglas has had PD for 17 years now -- but we haven't given up hope!

http://i10.photobucket.com/albums/a126/maesisaf/hugs2.gif
I'm/we are very lucky as i am able to care for Jim, he has been in stage 5 for 5+ years, and the last 2 fully dependent on me.
At first i just thought i had to do everything yesterday, jump when he whimpered, but i have learnt to calm down, if he wasn't poorly he would have to wait,fora cup tea, turn over the tv , so why not now, they are things that are not detrimental to his health, It's hard not to do it, but i found he had me running round in circles,which normally he wouldn't, PD thought it moved into a 5*hotel,but now it knows it's slumming it
http://i10.photobucket.com/albums/a126/maesisaf/sit%20pictures%20not%20used/73035090.jpg

[susan wheatley]

hi, like tinkerbell i have my husband the kids dont really understand what its like to have pd and how it affects me on a day today basis, they think because i still go to work still do the housework i am still able to do everything for them my youngest son is 18, my oldest son is 24, and my daughter is 20, none of them offer any help and still expect me to do everything, they dont seem to see the struggle i somtimes have and the tiredness thank goodness i have my husband.

[heather]

Hi Susan

I bet you hide how tired you are from them as well, do they live at home

remember this is only my opinion , i think they are all old enough,to be left to defend for them selves
If they live at home ,then i think you will need to stop doing all their jobs,it's a mums job to love and look after our children,but we do have to draw a line,and realise we have the unconditional love, but not energy, even without PD

Maybe because you do all these things, they don't have to think mum is poorly, it may be their way of coping, but that's no good if it's stressing you. PD thrives on stress
please remember this is just my opinion,
the saying crule to be kind comes to mind

[susan wheatley]

hi heather, you hit the nail on the head my husband keeps telling me off let them tidy their own rooms ect ect, and the big one let them catch a bus instead of taxiying (excuse the spelling) and i try to hide how tired i get from the whole family my husband included but somtimes he just knows.

[tinkerbell]

hi susan,

mine are exactly the same as yours, it's like your describing our household, i have finally got one of them to move out at the end of the month well he is 26. the other one is 24 and moving out in september. then i have only 1 left who is 18. so hopefully it won't be so bad then.
tinkerbell

[heather]

hi heather, you hit the nail on the head my husband keeps telling me off let them tidy their own rooms ect ect, and the big one let them catch a bus instead of taxiying (excuse the spelling) and i try to hide how tired i get from the whole family my husband included but somtimes he just knows.
Hi Susan
as a mum of 2 i always thought i could do it better than them ,and quicker , I always went over the job's did when i was in work,when he wasn't looking. Then as things got worse hear,i realised something had to stop,so it was the cleaning of their room's /i would put clean bedding out,if they did change it, it was them sleeping it a dirty bed [if they wanted to live in a pig sty let them],i would close the bedroom door,and forget about it, they soon started to do it, as they couldn't ask their friends around ,it was so :o:o

[susan wheatley]

hi tinkerbell, glad to know there,s somebody in the same boat is your house a mad house as well, i wish one of mine would move out but then i would probably miss them all, my daughter did move out for 6mths but kept coming home for a feed, but it did,nt work out so she,s back home now and once again the bedroom is a mess the boys rooms are,nt as messy as hers what can you do with them.

[suzie Q]

they must all be the same .My daughter is coming home in a few months she has been living in Scotland .Looking forward to having her back home, but oh,
the mess she makes ,,,,,,,,,,,,,,


Sue

[Bellinghamster]

http://i10.photobucket.com/albums/a126/maesisaf/hugs2.gif
I'm/we are very lucky as i am able to care for Jim, he has been in stage for 5+ years, and the last 2 fully dependent on me.
At first i just thought i had to do everything yesterday, jump when he whimpered, but i have learnt to calm down, if he wasn't poorly he would have to wait,fora cup tea, turn over the tv , so why not now, they are things that are not detrimental to his health, It's hard not to do it, but i found he had me running round in circles,which normally he wouldn't, PD thought it moved into a 5*hotel,but now it knows it's slumming it
http://i10.photobucket.com/albums/a126/maesisaf/sit%20pictures%20not%20used/73035090.jpg

Heather,

Douglas had me running in circles as well, or at least it felt that way. I have to admit that some of the circle running was brought about by me -- thinking I had to do everything by myself because "he" can't. That was dumb on my part and that thinking also takes away the will of the PD person to want to do anything. However, Douglas is in a place that has a staff of over 50 that can and does meet his needs. When he comes home over the weekend he "tries" the poor-me act but I'm on to him now!! He gets along quite well at home when I'm there. It is just not safe for him to be alone because he is unable to communicate so calling for help is out even though we have the phone alert system. Falling is his largest problem plus he is in a wheelchair. Although he can still transfer himself the chance of falls is greater. He has lost over 45 lbs. since this past February, another concern so now we are facing a feeding tube -- something he has refused in the past. And the beat goes on! It is what it is, but I'm a fighter and PD will not win this battle without a knock down, dragged out punch or two from me. (and one poke for Douglas). Keep the faith!

Brigitte

[heather]

Hi Bridget
have been :):):) to my self,i honestly can't believe , how alike Douglas and Jim are, the poor me, my Mum would come and she would whisper poor Jim, well one thing Jim is not hard of is hearing , and he understands everything, so after she goes home, and the fussing stops , he starts playing up, so i say, sorry poor Jim has gone home, and it's me now the wicked witch of the north :D:D
It must be nice having him home for weekends, even though he plays you up

For want of a better word, because Jim now has to be hoisted so I no where i put him, is where he will be when i get home, as long as i remove the remote, from his chair/bed
He has a feeding tube, We put it off till i said he was ready, as he was eating and drinking well when they wanted to put it in, it was in case he choked, he was told what could happen, and he made the decision not to have it, I use is to put extra fluid down him especially in the hot weather , and to get some of his medication mainly antibiotics, his other tablets he takes with food ,or by using a syringe as i seem to tip liquids if he refuses to open his mouth wide, i also use thick and easy for drinks and soup,
He has 4 supplement feeds a day 3 cartons and one supplement desert which i give him his night medication with
and if it gets to much, i dilute , one of his cartons and pop it down his tube
i give him his night medication in his dessert,
I will addmite to you but no one else shhhhhh, the tube is a blessing, as I get about3-4 litres of water down him, so it keeps his urine patent, so less chance off infection ,
well must go make me some tea it's 7pm also time for my Emerdale farm
catch up soon

[bruce]

hi susan,

mine are exactly the same as yours, it's like your describing our household, i have finally got one of them to move out at the end of the month well he is 26. the other one is 24 and moving out in september. then i have only 1 left who is 18. so hopefully it won't be so bad then.
tinkerbellhello Tinkerbell Boy your story reads like mine. I took my daughter and her boyfriend and their daughter to stay with my other daughter a few days. I can just stand so much! They are suppose to move out in early June. We'll see. My dasughter is 20. I have a son that is 30,has 3 children and the daughter-in-law from hell! They quit coming around years ago. when they were coming around my son did not want to discuss my illness. He would leave immediately if the topic came up. His father-in-law died from pd. They spent a great deal of time with him. Go figure! I guess the old saying a sons a son till he takes a wife, adaughter is a daughter the rest of your life. Things will always get better. It's the circle of life. bruce

[bruce]

What stage of disease is the worst that can happen? How do I know what stage I am at now? Until today after reading this forum I had never even thought about stages. I think I am still not really dealing with what the future is going to hold for me. It may be a good thing that I don't! Maryg. :eek:Hello maryg, I am not sure what stage I am in right now. I knew a few years ago. I do not have time to worry about stages. I am busy getting on with the business of living. I hope that my Maker will see His way to tyake me home before things are too bad. But I am not going to dwell on the what ifs. Time is too precious. Best of luck and remember this forum is a Godsend!bruce

[tinkerbell]

hi bruce,


its a nightmare, these children that won't move out. but still i'm going away tomorrow and i am leaving them all to it, i have had enough.
i thought they would have moved out by now.

lol tinkerbell

[heather]

Hello maryg, I am not sure what stage I am in right now. I knew a few years ago. I do not have time to worry about stages. I am busy getting on with the business of living. I hope that my Maker will see His way to tyake me home before things are too bad. But I am not going to dwell on the what ifs. Time is too precious. Best of luck and remember this forum is a Godsend!bruce

Hi Bruce
You have a lovely way with words and thought's. until i came on hear i had no idea about stages,
I think these are truest statement's i have ever herd
"
I do not have time to worry about stages. I am busy getting on with the business of living.
I am not going to dwell on the what ifs. Time is too precious."

Thank you for reminding us
God bless you my friend

[bruce]

Hi Bruce
You have a lovely way with words and thought's. until i came on hear i had no idea about stages,
I think these are truest statement's i have ever herd
"
I do not have time to worry about stages. I am busy getting on with the business of living.
I am not going to dwell on the what ifs. Time is too precious."

Thank you for reminding us
God bless you my friendI am really glad that I could ease your worries. That is what is so great about this forum. WSe are the only people that can truly understand each other. Our families try our friends try but WE are the only ones that really know. Keep going strong!bruce

[heather]

Hi Bruce

as a carer I may have concentrated to much on me, and how to care for Jim, and keep him well, what i realise since i have been on hear is, that I do have to have some knowledge of ,his illness
and how he feels about it
Though we have always been honest and open from day one,i/we have not really known about his illness, i researched into it , with him not actually having PD, it very strongly mimics PD, we have plodded,our way through, but now i understand so much more with a lot of help from you and my friends on hear, and though we can't turn back the clock, we can move forward, with a better quality of life.
Thank you all, for being our friends

[bruce]

Hi Bruce

as a carer I may have concentrated to much on me, and how to care for Jim, and keep him well, what i realise since i have been on hear is, that I do have to have some knowledge of ,his illness
and how he feels about it
Though we have always been honest and open from day one,i/we have not really known about his illness, i researched into it , with him not actually having PD, it very strongly mimics PD, we have plodded,our way through, but now i understand so much more with a lot of help from you and my friends on hear, and though we can't turn back the clock, we can move forward, with a better quality of life.
Thank you all, for being our friendsHeather, You are a tremendous attribute to this forum. You DO understand pd people very well. Keep, keeping on! bruce

[heather]

Hi Bruce
thank you, but it is after all your post's that i have realised, that we have survived with gods help and common-sense
but now i can understand what's been going on,it makes sense,and all i want to do is help my friends to understand it as a carer.To help some one with PD it's all your job my friend/friends
Payment unconditional friendship

[bruce]

Hi Bruce
thank you, but it is after all your post's that i have realised, that we have survived with gods help and common-sense
but now i can understand what's been going on,it makes sense,and all i want to do is help my friends to understand it as a carer.To help some one with PD it's all your job my friend/friends
Payment unconditional friendshipHeather, You and everyone on this forum have my unconditional friendship. I thank Leann everyday for starting this forum. I know her mother would be so proud.bruce

[heather]

Hi Bruce
Hope you are on a good day

didn't get on yesterday, and missed not nattering to everyone

I had so much house work to catch up on, and it was such a sunny day, in the afternoon, i got Jim to agree to sit out in the garden, it takes such a long time to get him out, about 20 min or more, between hoisting him in to his chair, getting the bridging ramp to get him through the French doors, moving the heavy metal garden wooden chair.But it was well worth it, I have one of those big sun umbereler [spelling ugh] That you wind up, i put the bottom half in the base, but the top half is almost as tall as me, and weight's a ton , you would have thought,i was in a circus :D:D , we sat out for almost 2 hour's ,i had 2 glasses of wine, it's such a long time since we did that. Today it's dull and chilly :mad:

[bruce]

Hi Bruce
Hope you are on a good day

didn't get on yesterday, and missed not nattering to everyone

I had so much house work to catch up on, and it was such a sunny day, in the afternoon, i got Jim to agree to sit out in the garden, it takes such a long time to get him out, about 20 min or more, between hoisting him in to his chair, getting the bridging ramp to get him through the French doors, moving the heavy metal garden wooden chair.But it was well worth it, I have one of those big sun umbereler [spelling ugh] That you wind up, i put the bottom half in the base, but the top half is almost as tall as me, and weight's a ton , you would have thought,i was in a circus :D:D , we sat out for almost 2 hour's ,i had 2 glasses of wine, it's such a long time since we did that. Today it's dull and chilly :mad:Hi Isn't amazing how a wonderful day seems to overshadow all bad ones? I am so glad you all have this day to carry you to the next great day! bruce

[susan wheatley]

hi heather, glad to hear you had a nice day yesterday its good to relax we had a bbq and for once i actually didnt have anything to do i just sat in the sun the kids were very helpful for once and waited on me instead of the other way around, hope you are both well today lol susan.

[heather]

Hi Susan
sounds like you had a good time, you mus have felt like a queen
It's been dull hear all day and looks like rain

I have 2 days to work then have 11 days off,not making any plans , when i say tomorrow, it always rain :(

[Filo]

Hi,

My first visit here, and have been looking around this amazing site.

Thank you for all your support and common sense and info - what a wonderful resource.

I have had PD since age 5, am 40 now, and have taken Sinemet Plus for a long time with no real problems.

For the last 6 months or so, have been hit hard by wearing off problems and have gone, it seems to me from satge 1 to stage 3 or 4 in a few months - can this happen?

Would love to chat more - looking forward to finding out about you all,

[bruce]

Hi,

My first visit here, and have been looking around this amazing site.

Thank you for all your support and common sense and info - what a wonderful resource.

I have had PD since age 5, am 40 now, and have taken Sinemet Plus for a long time with no real problems.

For the last 6 months or so, have been hit hard by wearing off problems and have gone, it seems to me from satge 1 to stage 3 or 4 in a few months - can this happen?

Would love to chat more - looking forward to finding out about you all,Hi,Filo I never knew someone could get pd as a child. You must have had wonderful doctors. I do not know exactly how the stages work,I mean, I do not know the symptons of each stage. Have you discussed another med. with your doctor? I am sorry I do not know more. Sometimes I think ignoran ce is a blessing. best to you,bruce

[Pauline]

Hi,

My first visit here, and have been looking around this amazing site.

Thank you for all your support and common sense and info - what a wonderful resource.

I have had PD since age 5, am 40 now, and have taken Sinemet Plus for a long time with no real problems.

For the last 6 months or so, have been hit hard by wearing off problems and have gone, it seems to me from satge 1 to stage 3 or 4 in a few months - can this happen?

Would love to chat more - looking forward to finding out about you all,

Hi Filo welcome to the forum My name is Pauline and I was diagnosed in Jan . with PD.and just taking one day at a time ans enjoying what I can :):):)Pauline

[heather]

http://i10.photobucket.com/albums/a126/maesisaf/sit%20pictures%20not%20used/pspindian10sevencopy.jpg

I'm Heather
I care for Jim ,my Husband for just over 12 years, he has a illness that mimics PD, and no medication works,[ sinemet plus for shakes] so i post on hear as a carer and how we have coped through the stages

After reading all the post's on hear, I have learnt, that each person with PD is very much a individual,
Jim was in the 2 nd and very quickly went into 3rd stage when he was diagnosed, I think this was because off stress, as it took so long to get a diagnosis, and we had to work out so much for or selves, as no one seemed to no what to do

So we decided, to do our thing, and it took approx 8 years to get to stage 5, which he has been in for about 5 years [ they gave him 7 years when diagnosed]

We find, positive attitude , honesty , and a good sense of humour ,are the ingredient's need, also like Pauline said, take each day as it comes, deal with it, and get on with life , which
i would say you have been doing all these years
I can't post about medication, as i'm learning first hand off people on hear, but someone will catch up with you
so look forward to your post's, and how you have coped for all
these years, and from such a young age

[Filo]

Thanks to you all for your responses - it is amazing that you all take the time.

I haven't really spoken to anyone else ever about this before, and although I have lived with it all my life, it has never really got in the way before - I am really, really lucky.

Over the last year, things have been so bad it has been impossible to ignor, and as well as facing the day to day challenges of being physically so unwell - am feeling a bit better now though - have had to deal with this "label" and all that that means. Thanks for your advice on taking one day at a time.

My partner has been amazing, we have been together for 20 years or so now, and we talk about things, but for him I think it is worse -

I still don't talk to anyone else really, although its obviuos something dramatic has happened, just try and carry on as ever.

Have stopped working just now - but hope to get back into it soon - would love to hear how you all deal with all this stuff.

thanks again for your time.

[susan wheatley]

hi filo, nice to meet you i didnt know anyone so young could get pd how did the doctors find out you had pd at 5yrs old.

[suzie Q]

Hi Filo

Hope you enjoy the forum My name is sue i have had P.D. for 5 years .i live in Tasmania Australia hope to talk to u soon

sue

[heather]

Hi Filo
Hope you are on a good day
I have found since i came on hear i have found true friends, that i can give my opinion to, which you will find you can also do, everyone are true friends , they/we all want, need to help ,each other, i have found since being on hear i can now speak openly to anyone, and if the don't like it, can lump it, all i care about is Jim and me, there is a lot on information hear, so you will find it may take some time to read it all, so if you, want some info, just ask, there is always someone around ,to help
both carer's and PD friends.

You say you think it's harder for your partner, some ways it might be, just watching your love one struggle, but feel i am the lucky one, as i'm not the one with PD,

I like your positive attitude , when ever we get a problem
we deal with it , shelve it and let the dust collect on it , we never look back, only forward,
what is your Job?, are they adapting your place of work?, Ltd- addition on hear can help you,as she is having a fight on her hands at the moment, and she is from the UK
Catch up soon,

[Pauline]

Hi Filo
Heather has summed it up very well Heather has a lot of knowledge and we all respect her opinion:):):)Pauline

[MargieB]

Thanks to you all for your responses - it is amazing that you all take the time.

I haven't really spoken to anyone else ever about this before, and although I have lived with it all my life, it has never really got in the way before - I am really, really lucky.

Over the last year, things have been so bad it has been impossible to ignor, and as well as facing the day to day challenges of being physically so unwell - am feeling a bit better now though - have had to deal with this "label" and all that that means. Thanks for your advice on taking one day at a time.

My partner has been amazing, we have been together for 20 years or so now, and we talk about things, but for him I think it is worse -

I still don't talk to anyone else really, although its obviuos something dramatic has happened, just try and carry on as ever.

Have stopped working just now - but hope to get back into it soon - would love to hear how you all deal with all this stuff.

thanks again for your time.

Hi Filo, WELCOME to this wonderful Forum. My name is Margie and my husband Tony was diagnosed with PD 4 years ago.

That advice of taking one day at a time is a gem. Sometimes we take just one moment at a time and before we know it...things are better. Don't let the PD get you down. Fight it. Don't let it win.

The people on this Forum are wonderful. There is always someone who can make you smile, give you good advice, chat with you, etc.

Glad you are here.

Margie

[bruce]

Thanks to you all for your responses - it is amazing that you all take the time.

I haven't really spoken to anyone else ever about this before, and although I have lived with it all my life, it has never really got in the way before - I am really, really lucky.

Over the last year, things have been so bad it has been impossible to ignor, and as well as facing the day to day challenges of being physically so unwell - am feeling a bit better now though - have had to deal with this "label" and all that that means. Thanks for your advice on taking one day at a time.

My partner has been amazing, we have been together for 20 years or so now, and we talk about things, but for him I think it is worse -

I still don't talk to anyone else really, although its obviuos something dramatic has happened, just try and carry on as ever.

Have stopped working just now - but hope to get back into it soon - would love to hear how you all deal with all this stuff.

thanks again for your time.Hi,Filo I retired and after 2 years went back to work part time but had to give it up after 6 months. I hope you have a better experience. Now that you are a member of this forum, I hope you will not feel you have to keep things bottled up. AS THEY say let it all hang out! You will be very surprised by the warmth you will find on this forum. bruce

[Drew Saunders]

Hi,Filo I retired and after 2 years went back to work part time but had to give it up after 6 months. I hope you have a better experience. Now that you are a member of this forum, I hope you will not feel you have to keep things bottled up. AS THEY say let it all hang out! You will be very surprised by the warmth you will find on this forum. bruce

Hi Filo, my wife retires in January next year - 2009. She works part time 9.00am - 1.00pm Mon to Fri. It is ok in the summer because I can can get out and about on my mobility scooter but the winter is dire. I feel as if I am imprisoned each morning. We are considering living in Malta during the winter months and coming back to UK for the "better" months. The problems of course are financial. Can we afford to keep our current house and pay rent for a place abroad? We are number crunshing on this dilema. I'm sure I or we are not the only people faced with this dilema.
I am willing you to make your wifes's retirement "do". Prayers will be sent, God Bless
Drew

[Filo]

Wow, thank you all for your wonderful responses.

You know, I was afraid to join you all in case you all thought i didn't deserve to be here and ask such questions, or even worse you didn't repy!

I think i was silly to worry - you are all so nice and supportive. I am really interested about all your comments about good days and bad days - my Dr says that all his patients tell him that they too have "good days and bad days".

It never occured to me this was the case, but obviuosly now it all seems to make sense.

I was concerned that you would all talk about things that were not really very similar to my own concerns, and i might bore you with irrelevant questions.

Thank you Drew for your comments on Financial matters - you are brave to raise such concerns in public. We too are beginning to have to think about how the bills are paid - I have stopped working for about a year almost now, and money runs out in the end..... hearing how you all just get on with it makes me realise that others cope, and i'm sure we will adapt and survive.

I would like to thank everyone for all their comments, I have found your support a great benefit.

Will keep reading all about you amazing people - thanks again.

[heather]

Hi Filo
we are all equals on hear.
and only by asking questions, do we get answer's.
every question we think about, has to have a answer no matter how small or big,and someone on hear will have the answer
then we can move on, once we no the answer.

hope that makes sense, not very good with words
I believe we have to have the bad days, to appreciate the good days
Take care, and just ask away, and if you no the answer's please tell us

[Drew Saunders]

Hi,

My first visit here, and have been looking around this amazing site.

Thank you for all your support and common sense and info - what a wonderful resource.

I have had PD since age 5, am 40 now, and have taken Sinemet Plus for a long time with no real problems.

For the last 6 months or so, have been hit hard by wearing off problems and have gone, it seems to me from satge 1 to stage 3 or 4 in a few months - can this happen?

Would love to chat more - looking forward to finding out about you all,

Hi Filo
Just been cruising through the site. Wearing off problems - I was having that problem but consultant gave me Azalect 1mg 1 per day to take with my sinemet 65.2 now ok as long as i remember to take on time, Be well
Drew

[Filo]

Hi,Filo I retired and after 2 years went back to work part time but had to give it up after 6 months. I hope you have a better experience. Now that you are a member of this forum, I hope you will not feel you have to keep things bottled up. AS THEY say let it all hang out! You will be very surprised by the warmth you will find on this forum. bruce

Thanks for your kind words everyone...

Been to see Dr again today, full of expectation and hope, only to be brought back down to earth with his words of reality.

How do you all deal with Dr appointments and all the news you are given..... one day at a time sounds good, but difficult?

Thanks again

Filo

[susan wheatley]

filo,
i know its hard when the dr tells you something you dont want to hear just remenber theyre not always right about everything those of us who have pd are the experts because only we know how it affects us i know its been said before but you have to take one day at a time and dont let it beat you god bless susan.

[Pauline]

Thanks for your kind words everyone...

Been to see Dr again today, full of expectation and hope, only to be brought back down to earth with his words of reality.

How do you all deal with Dr appointments and all the news you are given..... one day at a time sounds good, but difficult?

Thanks again

Filo
Hi Filo
Don't let them get you down the last time I was to the Dr, I was depressed for days after ward and during that time my symptoms where worse so I was letting PD win and I am not going down with out a fight so enjoy your good days and forget about the bad one, just enjoy what you have don't let this thing win :):):)Pauline

[MargieB]

Hi Filo
Don't let them get you down the last time I was to the Dr, I was depressed for days after ward and during that time my symptoms where worse so I was letting PD win and I am not going down with out a fight so enjoy your good days and forget about the bad one, just enjoy what you have don't let this thing win :):):)Pauline

Hi Filo,

I'm Margie. I do not have PD, I am the caregiver (along with my son) for my husband Tony. He was diagnosed four years ago, but we suspect that he had it a time before his diagnosis.

I agree with Pauline...don't let them get you down. Most doctors talk so fast with words that they use every day...but it is not knowledgeable to us. So we listen very hard...catch what we can...and most of the time before we can get our thoughts together...to ask some questions...the check up is over. You can fight this PD. We are all in this together. There are such good people on this Forum. Both Parkies and caregivers. We are glad you are here with us.

Positive thoughts, music, watching sports (if you like sports) going for walks, etc. anything that you enjoy is good therapy for you and bad for PD. 'It' doesn't like anyone to enjoy anything...but we have the upper hand Tony and I believe. We have down days. Tony sometimes has very bad days. But then there are the good days. Enjoy the good days to the fullest and remember them. Forget the bad days as soon as they are over. Don't give them any recognition after they are gone. It is hard, I know...but you can do it. All here will help you.

Talk with you again some time. God Bless and help you.

Margie

[MargieB]

Wow, thank you all for your wonderful responses.

You know, I was afraid to join you all in case you all thought i didn't deserve to be here and ask such questions, or even worse you didn't repy!

I think i was silly to worry - you are all so nice and supportive. I am really interested about all your comments about good days and bad days - my Dr says that all his patients tell him that they too have "good days and bad days".

It never occured to me this was the case, but obviuosly now it all seems to make sense.

I was concerned that you would all talk about things that were not really very similar to my own concerns, and i might bore you with irrelevant questions.

Thank you Drew for your comments on Financial matters - you are brave to raise such concerns in public. We too are beginning to have to think about how the bills are paid - I have stopped working for about a year almost now, and money runs out in the end..... hearing how you all just get on with it makes me realise that others cope, and i'm sure we will adapt and survive.

I would like to thank everyone for all their comments, I have found your support a great benefit.

Will keep reading all about you amazing people - thanks again.


Filo...remember...you are one of those amazing people :) too!
Margie

[mwright305@comcast.net]

The neurologist told my husband that PD is a "designer" disease and that it effects no two people the same. No one really knows, not even the experts, what is going to happen specifically to you, tommorrow, or in the future.
One thing that I know for sure, because I have seen it first hand, is that excerise and a positive outlook helps a tremendous amount!

[heather]

Hi mwright
that is so true, I like the comment "designer" because that's exactly what it is , anyone with PD is so different,but on the other hand the same, "fighters"
Take care look forward to more posts

[Filo]

Hi Filo,

I'm Margie. I do not have PD, I am the caregiver (along with my son) for my husband Tony. He was diagnosed four years ago, but we suspect that he had it a time before his diagnosis.

I agree with Pauline...don't let them get you down. Most doctors talk so fast with words that they use every day...but it is not knowledgeable to us. So we listen very hard...catch what we can...and most of the time before we can get our thoughts together...to ask some questions...the check up is over. You can fight this PD. We are all in this together. There are such good people on this Forum. Both Parkies and caregivers. We are glad you are here with us.

Positive thoughts, music, watching sports (if you like sports) going for walks, etc. anything that you enjoy is good therapy for you and bad for PD. 'It' doesn't like anyone to enjoy anything...but we have the upper hand Tony and I believe. We have down days. Tony sometimes has very bad days. But then there are the good days. Enjoy the good days to the fullest and remember them. Forget the bad days as soon as they are over. Don't give them any recognition after they are gone. It is hard, I know...but you can do it. All here will help you.

Talk with you again some time. God Bless and help you.

Margie

Thank you again for your encouraging words - they really do help.

Today, I hope your day has been at least as good as mine, not brilliant, but better for reading your words, and encouraged to carry on - thank you. Anything is possible on a good day, and I'm beginning to remember that, and forget all about the bad ones - why didn't I figure this out for myself?

Thanks for telling me this Gem

Thanks again
Filo

[Pauline]

Thank you again for your encouraging words - they really do help.

Today, I hope your day has been at least as good as mine, not brilliant, but better for reading your words, and encouraged to carry on - thank you. Anything is possible on a good day, and I'm beginning to remember that, and forget all about the bad ones - why didn't I figure this out for myself?

Thanks for telling me this Gem

Thanks again
Filo

Hi Filo You would have figured it out in time but that is why this forum is so great One for all All for one :):):)Pauline

[Joyce Adams]

What stage of disease is the worst that can happen? How do I know what stage I am at now? Until today after reading this forum I had never even thought about stages. I think I am still not really dealing with what the future is going to hold for me. It may be a good thing that I don't! Maryg. :eek:

Is swalling a major problem for someone with Parkinson?

[dlmarcoux]

Yes it is a problem with PD

Doris

[Pauline]

Maryg
I think it is much better not knowing what stage your at just face one at a time and make the best out of it as you can we can cross those other bridges when we come to them and there a good chance we may not have to cross another bridge for awhile so enjoy what you can :):):)Pauline

[heather]

Hi Maryg
Like Pauline said
"it doesn't matter what stage you are at", it's how you cope with what is happening,at any time, and keeping positive
My husband Jim [ he has a illness that mimics PD] was told he was in the latter stage 5 years ago, well being the lady i am, I reminded his consultant that he told him he had 7 years over 12 years ago, and 3 years ago, he told us to go home and enjoy our last Xmas together.
My lady like reply was, " I see you are still practising to be GOD " He was not amused, and we haven't had a follow up appointment since, and we are still going from strength to strength
6 weeks ago he had a cataract removed from his right and, and it has given him a new lise of life and going for the other in a few weeks time, then he will be able to see more than he can get :p:D

http://i10.photobucket.com/albums/a126/maesisaf/gooddayf17f.jpg Not PD

[heather]

Is swallowing a major problem for someone with Parkinson?

Hi Joyce
swallowing, can be a big problem, Jim say a speech therapist and she showed him how to try and correct it, It seems it can't be cured, but it did help , and though they told him years ago, he was not to eat, he still eats liquidised food, and cereal

[phil woodruff]

Heather, I am amazed that I only really have one friend left and he calls less and less. My family has no contact with me except 2 aunts. I love it when people ask how are you but they really dont want to hear. I dewpend on the mutual support of my life long friend and love, my wife. My children,except for my son, are very loving and try to understand but they still expect Dad to be the same. The Dad that could "fix" everything. I have come to the realization that my wife and have to do what is best for us. We ,none of us, know how much quality time we have left; so we plan on enjoying every moment together!!!! bruce
hey bruce thisis phil i have a very sick wife,she is 55 now she has had pd for 13 yrs now,i know what you mean about family drop a line sometime.

[Margie2]

hey bruce thisis phil i have a very sick wife,she is 55 now she has had pd for 13 yrs now,i know what you mean about family drop a line sometime.


Hi Bruce,

This is Margie2. I hope you remember me. I was a member of this wonderful Forum since its start. I have been off for quite a time because I did not have any computer of my own. Now I do...and I want to tell you that I am still a friend of yours. You and Elaine are still part of my dear friends that I made through this Forum. Ltd-addition sent me a card just a little while ago and she put your names with some others on the card to send me your greetings. You have no idea how much that brought me happiness. Thank you for thinking of me.

You are right about Elaine and you enjoying each and every moment you can together. That is what Tony and I are doing. His PD has given him quite a difficult time these last few months but in spite of the PD we try very hard to make the best of the 'bad' days and enjoy to the hilt, the good days.

God bless you and Elaine. I pray that a special blessing will come to both of you that you have more good days than difficult ones.

I am so glad that I am able to write to you again.

I read a few days ago that a doctor was treating one of his patients for severe allergies with bee pollen injections. This particular patient has PD also. While treating the patient with the bee pollen injections, he (the patient) started to show fewer symptoms of his PD. The Michael J. Fox Foundation has given this doctor (whose name I don't recall...and can't find the article so sad to say) to further research this finding. Have you or Elaine read/heard anything about this?

Please hang in there with me and Tony. Let's not give PD and any of its symptoms the win. We are the winners and winners never quit--they might get discouraged at times; get tired at times; get depressed at times; etc. but all this is allowed because of our humanhood. But we will not be losers, dear Bruce and Elaine.

Fondly,
Margie2

[Margie2]

Hi Joyce
swallowing, can be a big problem, Jim say a speech therapist and she showed him how to try and correct it, It seems it can't be cured, but it did help , and though they told him years ago, he was not to eat, he still eats liquidised food, and cereal


Dearest Heather,

ROSES ARE RED...
VIOLETS ARE BLUE...
I'M SO GRATEFUL...
TO BE 'TALKING' WITH YOU...

AGAIN :)!

Have a new computer! Hoorah! Now I can send you a tremendously big hug and much love to you and Jim.
I've missed you very much, my dear friend and Teacher :D--but I have never forgotten you.

Will write soon again.

With love,
Margie2:p

[heather]

http://i10.photobucket.com/albums/a126/maesisaf/hello78d.gif

well hello stranger
have missed you, hope YOU and Tony are well
I didn't get on for a time, and don't get on as much as i would like to.
Jim is up and down, at the moment he has a bowell problem, since he went to have his feeding peg changed, and a infection, in his wound, so back on the antibiotics
The weather is getting much better :), and the garden is starting to wake up, on problem is i now have to find sometime to get plant sorted after the winter, but at least it will look nice and cheerful

I spoke to Ltd Edition a few weeks ago, she is having a rough time, and i think she is off work, she also said Drew is not to good, they do speak on M.S.N a lot, and i think they are helping each other in a big way bless them

[Pauline]

Margie
Great to have you back :):):)Pauline

[Margie2]

Margie
Great to have you back :):):)Pauline

Oh Pauline, It is WONDERFUL to be back. Thanks so very much for everything.
Margie :)

[Margie2]

http://i10.photobucket.com/albums/a126/maesisaf/hello78d.gif

well hello stranger
have missed you, hope YOU and Tony are well
I didn't get on for a time, and don't get on as much as i would like to.
Jim is up and down, at the moment he has a bowell problem, since he went to have his feeding peg changed, and a infection, in his wound, so back on the antibiotics
The weather is getting much better :), and the garden is starting to wake up, on problem is i now have to find sometime to get plant sorted after the winter, but at least it will look nice and cheerful

I spoke to Ltd Edition a few weeks ago, she is having a rough time, and i think she is off work, she also said Drew is not to good, they do speak on M.S.N a lot, and i think they are helping each other in a big way bless them


Dear Heather,

I've just written two posts to you, quite lengthy, but when I tried to preview post, then submit reply, they just disappeared. I am going to try this third time but then I'll get to sleep for an hour or two.

Oh, it is so good to be back and read your loving letter post to me. And that beautiful picture you sent me. I am going to keep it always dear friend.

I'm saddened to hear about the difficulties Jim is having. I hope he will be on the mend within the next few days. Hopefully the antiobiotics will clear up the infection and not irritate his stomach. Please say hello to him from us.

The weather is getting warmer here too. Some days have reached 60 degrees and over. Some trees are showing green fuzz. That's a good sign of spring.

Tony is very sick. I keep hoping that with spring his health will improve. I really am hoping for a minor miracle. Maybe he will be granted one.

You give me courage and hope dear Heather. You have taken care of Jim in so many ways. You set an example for me to follow. It's not easy, as you know but somehow, somewhere the strength comes. But anger comes to me too. I wish it would get lost (ha! ha! if only it were that easy).

Signing off for today. Look forward to your beautiful garden. I just know it will cheer you and Jim when it is blooming. ENJOY!

With love,
Margie

[Drew Saunders]

Hi Gang
It has been some time since I came on the forum. Had a TIA (very minor stroke) and life style changes have been put in place and I'm just fine.

Now then. Stages of disease.

It is a complete waste of time trying to assess what stage you are at. It does not matter. What matters is how you feel each day and enjoying that day the best way you can.

Worrying about the next downturn will only accelerate the downturn because you are only getting yourselves stressed out and making it worse.

Live for today. Tomorrow may not happen. Not everyone who has "Parkers" gets to a chronic stage. You do not die from Parkers you just with it and may not, in many cases, have anything to do with your death.

If you have a downturn then seek help and get appropriate meds to deal with the situation.

Worrying is good time wasted. Live, laugh and enjoy now. the future will take care of itself.

Right, that's got that off my chest!

Elaine and I are enjoying living in Letham (Angus). We moved up here to look after my Mother who is nearly ninety and getting a bit forgetful. While allof our time is not our own we are enjoying being with Mother. We still have a property in Leicestershire but we will not be going back. Scotland, at least Angus and surrounding area has such a lot of interesting places and the locals are very friendly. The medical facilities are second to none as well.

Anyway enough rambling from me.

Please remember today is what counts. If you are having an "off" day then look forward to tomorrow when you will likely be back "on" but worrying really does not help.

Have the best day that you can.

Drew

[Margie2]

http://i225.photobucket.com/albums/dd226/KaleyCiscoNana/Welcome%20Back/welcomeback1.gif?t=1238228334 (javascript:void(0);)

Hi Drew and Elaine, It's so very good to have you back. Both of you have been missed very much.
I'm so sorry about your stroke but I know that you are the type of individual who will take the meds you need to and cooperate with the life style changes that have been given you and come out healthier than you were before.
The fact that you and Elaine have moved to help your Mother shows what caring people you are. Goodness does not go unrewarded. May your goodness and love for your Mom gain you special blessings.
I'm sure you will be reading the posts to catch up on things, so I won't go in to what has been happening with my hubby, Tony. You will read it.
May I offer you my wish for both of you to have a really special good day!
Keep positive dear friends!
Margie:)

Hi Gang
It has been some time since I came on the forum. Had a TIA (very minor stroke) and life style changes have been put in place and I'm just fine.

Now then. Stages of disease.

It is a complete waste of time trying to assess what stage you are at. It does not matter. What matters is how you feel each day and enjoying that day the best way you can.

Worrying about the next downturn will only accelerate the downturn because you are only getting yourselves stressed out and making it worse.

Live for today. Tomorrow may not happen. Not everyone who has "Parkers" gets to a chronic stage. You do not die from Parkers you just with it and may not, in many cases, have anything to do with your death.

If you have a downturn then seek help and get appropriate meds to deal with the situation.

Worrying is good time wasted. Live, laugh and enjoy now. the future will take care of itself.

Right, that's got that off my chest!

Elaine and I are enjoying living in Letham (Angus). We moved up here to look after my Mother who is nearly ninety and getting a bit forgetful. While allof our time is not our own we are enjoying being with Mother. We still have a property in Leicestershire but we will not be going back. Scotland, at least Angus and surrounding area has such a lot of interesting places and the locals are very friendly. The medical facilities are second to none as well.

Anyway enough rambling from me.

Please remember today is what counts. If you are having an "off" day then look forward to tomorrow when you will likely be back "on" but worrying really does not help.

Have the best day that you can.

Drew