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ProgressiveB

How many other YOPD people are out there?

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I meet many elderly people with PD but never any with YOPD. I am 45 years old. I was diagnosed in Jan 2007. I feel as though I am "the last of the Mohicans". Anyone else out there with YOPD? Hello?

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adams234    242

Hello ProgressiveB. I was diagnosed in 2014 at the ripe old age of 35. I hear ya about feeling like a loan ranger. There are several people on this forum who are below 45 and several others who were dx'd long before they were 45.

 

Nice to meet you, Where do you hale from?

 

Blessings

Adam

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swva    81

45 here. Diagnosed at 44. Sure would have been nice if we didn't join this club for another 25 years or so.

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graflexmaster    1,182

I just (less than 3 weeks ago) turned 56, and have already had PD more years than I care to remember (see signature below)............. So nope, you are not alone... in fact no where close....<GRIN>

Edited by AB-Normal

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Diagnosed earlier this year at 43. I know what you mean...everyone w/PD that I've met at Tai Chi is definitely over 60. It would be nice to meet someone closer to my age. I've heard there's a YOPD support group in this area, but I can't find any further information. Have you looked for one in your area?

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graflexmaster    1,182

Well I'm 56, and with the young onset group in my area, it seems that everyone is a fair amount older than I. I'm sure when the group started everyone was much younger, but now?  they're not much younger than those in the regular PD groups..... So, where do you draw the line? as it's all relative............

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unprincess    54

Obvious symptoms at 36, chasing a dx since 38, finally got mine at age 45 (a few weeks ago). I haven't come "out of the closet" to many, as I am still trying to work, but to those I have, I usually get questioned because I don't fit the PD stereotype ("Are you sure? You just don't look like...."). I just tell them how awesome and nearly superhuman I must be because what takes most people 60+ years to accomplish, I did in 36. :-)

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graflexmaster    1,182

 I usually get questioned because I don't fit the PD stereotype ("Are you sure? You just don't look like...."). I just tell them how awesome and nearly superhuman I must be because what takes most people 60+ years to accomplish, I did in 36. :-)

I LOVE it..... That is one of the BEST descriptions I've heard yet........

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Panda    3

Hi. I'm 29, diagnosed at 28. I live in Australia and I'm feeling pretty disheartened at the moment by the lack of...focus? Awareness? Something for YOPDs. All of the support, exercise and recreational groups across my state meet in the middle of weekdays, and I still work full time. I managed to get to a one-off PD dance workshop on a Saturday morning, and the PD Australia rep assumed I worked there. Kept asking me where things were, even after I explained I was there for the workshop, then when she was handing out flyers and info sheets after the class she walked past me, saying surely I wouldn't be interested. That was my trial day to see how the organisation ran and I felt very, very overlooked. And I haven't reached out to them since. Feeling very alone.

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adams234    242

Pand, We understand. It can be a lonely road being young and having this disease. Even in the YOPD support group I attend, I am 10 to 15 years younger than most of them. They welcomed me so that was nice. How ever I can see what you are saying. All the other group meet mid day or mid week. I work as well so most of the work shops and events I can not attend. 

 

You have found a nice support group here. Feel free to ask questions and seek us out.

 

Blessings

Adam 

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i was diagnosed at 48, now 61.  i went to a support group shortly after being diagnosed just once and it was too depressing so stopped going.  i got information and social interaction from the internet.

one piece of advice i'll give right now is bone up on getting SSDI, you might not be thinking about it now but you things you do now can have an affect years from now when you apply.   i made every mistake in the book, didn't see a neuro yearly - didn't need to - and when i saw him the checkup was brief, no cognitive testing, so had poor medical record documentation of my progression, waited 2 years after i stopped working to apply, was self-employed and communicated with my customers over the phone/internet and even though i told them i had pd - felt ethically had to tell them - they never saw my progression, and when well medicated you couldn't tell physically that i had pd, mentally i was having the most difficulty. so no employer/customers who could attest to my disability and i pretty much never let my friends/family see me unmedicated when my pd symptoms came out.  so when i appeared before the SSDI judge to make my case, looking like i didn't have pd - because i had to prove i was disabled 2 years earlier even if i showed up unmedicated 100% disabled it didn't matter what i was like in 2014 - i was rejected.   my attorney said i was the first person with pd that she represented that didn't get ssdi.

 

i was a self-employed systems analyst/programmer that installed turnkey pharmacy computer systems, did everything, installed/maintained hardware and wrote software, not your typical job.  so when i was diagnosed with pd, i thought geez, i was wanting to find a salaried job but now who's going to hire me with pd, i better just make the most of my current biz, bet on a sure thing vs try to get another computer job being 48 and having pd - ain't going to happen.  anyway, to make a long story short, keep in mind that SSDI insurance, it's insurance just like auto insurance, has a 5 year window, and your benefit calculation is complicated so check your SS statement every year..  not wanting to scare you, just give you a heads up that better to know what it takes to get SSDI sooner than later. 

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stump    463

Panda is in Australia, not the USA, so SSDI will not mean anything. However, I'm sure Oz has its own version of government disability benefits. Whether they are as strict as ours, I have no idea.

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Panda    3

Yep, not a clue. We do have disability support here, certainly, and from the general comparisons I hear between US and Australian health and welfare services I imagine it's slightly more humane, but we do hear horror stories... Hopefully all that is a long way off, but it's always in the back of my mind.

 

Thanks for the support all, feeling better after a night's sleep :)

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