Hi all,
Hope this greeting finds you all well. Having read a few posts, I thought it high time I joined the forum. It seems a lot of you are 3, 4 and 5 year sufferers of PD. This makes me feel like a veteran, as I'm in my 12th year. If I could describe PD in one word it would be 'FRUSTRATION'. It has to be the most frustrating disease around.
Unfortunately I also suffer from 'Osteo Arthritis'. Of all the diseases I didn't want to have with PD, that was one of them.
Look out for my posts as I will be posting my thoughts and experiences of the last 12 years as a sufferer of PD.
Regards
Mick
Hi Papasmurf.
Would that be 12 years from diagnosis, or from the commencement of symptoms? Sometimes you can look back and see symptoms developing over several yeays prior to being diagnosed.
I'm 61, and was dx in 2000, but with hindsight can see the first indications developing as far back as 1970.
Ray.
Would that be 12 years from diagnosis, or from the commencement of symptoms? Sometimes you can look back and see symptoms developing over several yeays prior to being diagnosed.
I'm 61, and was dx in 2000, but with hindsight can see the first indications developing as far back as 1970.
Ray.
hi mick
those of us at the 3-4-5ish dx-age can learn a lot from those further down the trail, though not everyone wants to look that far ahead.
i agree with ray that for at least some young onsetters there is a very long lead-in period to dx.
cheers
those of us at the 3-4-5ish dx-age can learn a lot from those further down the trail, though not everyone wants to look that far ahead.
i agree with ray that for at least some young onsetters there is a very long lead-in period to dx.
cheers
Hello Papasmurf
Great name but I might of spelt it wrong
Welcome to the forum and hope you can share your 12 years of experience with us and how your coping living with this cruel disease. The word you use is FRUSTRATION and how right you are.
Look forward to reading your posts.
PB x
Great name but I might of spelt it wrong
Welcome to the forum and hope you can share your 12 years of experience with us and how your coping living with this cruel disease. The word you use is FRUSTRATION and how right you are. Look forward to reading your posts.
PB x
I shouldn't brag but I have entertained Parkinson's for about 17 years. Diagnosed at age 41.
Lin
xx
Lin
xx
Hi, Papasmurf,
Looking forward to reading your posts after 12 years of PD. Hope they're optimistic as I've only been dx about 2 years now & am relatively healthy.
There seem to be some others like you who've been living with it for a lot of years. It's always good to hear others experiences, good or bad.
Bye for now.
EM
Looking forward to reading your posts after 12 years of PD. Hope they're optimistic as I've only been dx about 2 years now & am relatively healthy.
There seem to be some others like you who've been living with it for a lot of years. It's always good to hear others experiences, good or bad.
Bye for now.
EM
17 years ... any advance on 17 years ... surely someone? no ... gone to dear Lin, the role of leader of the forum! hoorah!
(meant with sincere respect and admiration!)
(meant with sincere respect and admiration!)
Hello everyone on this bright sunny morning,
Welcome papasmurf how right you are frustration is the right word not just for the person with pd but also the family members. my husband has had it for almost thirty years and was diagnosed when he was 39yrs but had various problems several years before so I would think it was probably early thirties really. I do put comments on here and hope that they are useful but do worry that some may upset some members, my aim is to tell some of the situations we have coped with and I think most people not all can cope better if they have some knowledge as it is not a disease that you can forget or hide from, if only it were.
We have always appreciated others ideas for coping and we have been able to plan for the future in some area's such as adapting our bungalow re the bathroom bedroom etc and we have made the garden manageable, with a water feature and summer house which I have to say has proved a real bonus.
So I am sorry if I don't get it right all the time, I have appreciated the forum members friendship as now with my husband in a nursing home you can't just switch off being part of this great family of pwp and carer's. My main frustration is that there hasn't been enough change in the understanding of pd by the professionals and carer's in hospital's and nursing homes so I hope that all you younger ones have the energy and determination for making changes as we did in the eighties which brought about issues which are now in the fact sheets. Good Luck and keep fighting.
kind regards
best wishes
vivian
Welcome papasmurf how right you are frustration is the right word not just for the person with pd but also the family members. my husband has had it for almost thirty years and was diagnosed when he was 39yrs but had various problems several years before so I would think it was probably early thirties really. I do put comments on here and hope that they are useful but do worry that some may upset some members, my aim is to tell some of the situations we have coped with and I think most people not all can cope better if they have some knowledge as it is not a disease that you can forget or hide from, if only it were.
We have always appreciated others ideas for coping and we have been able to plan for the future in some area's such as adapting our bungalow re the bathroom bedroom etc and we have made the garden manageable, with a water feature and summer house which I have to say has proved a real bonus.
So I am sorry if I don't get it right all the time, I have appreciated the forum members friendship as now with my husband in a nursing home you can't just switch off being part of this great family of pwp and carer's. My main frustration is that there hasn't been enough change in the understanding of pd by the professionals and carer's in hospital's and nursing homes so I hope that all you younger ones have the energy and determination for making changes as we did in the eighties which brought about issues which are now in the fact sheets. Good Luck and keep fighting.
kind regards
best wishes
vivian
Hi all, me again. Thank you all soooo much for the welcome.
Ray,
I've had the PD symptoms since 2000. I even know the exact date they first manifested themselves. I was diagnosed in 2004. My mother, however, would tell you, I've was always a nervous sort of person. She used to say, you could always hear me carrying a cup of tea a mile away.
PB,
It would be my pleasure to tell all about my experiences. I've always wanted to get it down, as it were, and now I have a good excuse to do so.
I will be covering everything from start to present day. The first symptoms, medication, weight loss, coping with daily life, where I'm at now and what my prospects are in the future. I will also be getting the wife to put her thoughts on how she copes with me on a daily basis. She's my fulltime carer. God knows how she does it. She deserves a medal. I will post it in the Daily Life part of the forum. It will be a series of posts, part 1, 2 etc!
Regards
Mick
Ray,
I've had the PD symptoms since 2000. I even know the exact date they first manifested themselves. I was diagnosed in 2004. My mother, however, would tell you, I've was always a nervous sort of person. She used to say, you could always hear me carrying a cup of tea a mile away.
PB,
It would be my pleasure to tell all about my experiences. I've always wanted to get it down, as it were, and now I have a good excuse to do so.
I will be covering everything from start to present day. The first symptoms, medication, weight loss, coping with daily life, where I'm at now and what my prospects are in the future. I will also be getting the wife to put her thoughts on how she copes with me on a daily basis. She's my fulltime carer. God knows how she does it. She deserves a medal. I will post it in the Daily Life part of the forum. It will be a series of posts, part 1, 2 etc!
Regards
Mick
Cead Mile Failte Papa Smurf. Welcome to this boat of holes in which we all row, row,cry and laugh togeteher in!
I am currently writing the first part of my epic story. Hope it helps those of you who have been newly diagnosed with this curse to end all curses. Hope to post it in a couple of days, thats provided I get a spare few minutes to finish it and post it without bouncing around the room like a demented super ball.
Regards
Mick
Regards
Mick
Being a newcomer to the forum as a carer I am really looking forward to reading your thoughts. I pour over the forums every day and glean information and try to put it all together. Hubby diagnosed 22nd November as you say you never forget the date. He is possibly starting meds soon but like every newcomer we are floundering at the deep end or it feels like it. One thing I have picked up on and that is the determination and the laughter of everyone on here and it gives us hope knowing that we are not on our own and everyone has gone through the same or similar. Looking forward to meeting you all on the forums.
Sue
Sue
Part 1 has now been post in the Daily Life section. I hope you all enjoy, comments welcome.
Regards
Mick
Regards
Mick
Hello Visionvalue,
I have been thinking about your comment " you never forget the date of your diagnosis" Strangely, I can never remember it! I can only seem to work out the month & year by relating it to what I consider to be more important dates in my life.
Oh dear, that does sound pompous & critical. It certainly was not meant that way. I am tempted to abandon this post, but I think that I will leave it. I am trying to say that a dx of pd , whilst not the greatest of news, is not the end of the world. You can learn, from the experiences of others ways of coping , and in return maybe be of some comfort and help to others
With my best wishes to you and your husband
I have been thinking about your comment " you never forget the date of your diagnosis" Strangely, I can never remember it! I can only seem to work out the month & year by relating it to what I consider to be more important dates in my life.
Oh dear, that does sound pompous & critical. It certainly was not meant that way. I am tempted to abandon this post, but I think that I will leave it. I am trying to say that a dx of pd , whilst not the greatest of news, is not the end of the world. You can learn, from the experiences of others ways of coping , and in return maybe be of some comfort and help to others
With my best wishes to you and your husband
hi this is toonarmy, heard there is an event next saturday the 21st at the westdenton social club 7.30pm raffle and group's on.. for younger parkinsons sufferer's..doe's anyone have anymore information, or information about other up and coming events.