For those who care for someone with Parkinson's disease
[Home] [Forum] [Help] [Search] [Register] [Login] [Donate]
You are not logged in

Topic Who else is here? Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2010.03.01 19:22
Ok, I can start it off here. I'm Al, a Young Onset Parkinson's Disease (YOPD) patient diagnosed in 1986 at age 33. Who else or how many others of Us are here on the forum?

By packerman On 2010.03.02 11:53
I'm Pat and my PWP is my husband Tom. He was diagnosed at in 1995 at 38 and is now 53. We live in Nashville and see docs at the Vanderbilt Movement Disorder Clinic. He is disability retired, works on computers from home (when he can), had DBS in 2007 and is now on Medicare. We recently added on a handicap-accessible master bedroom & bathroom and enlarged our deck with a ramp for emergency exit. He generally does ok while I'm at work, but does report he falls sometimes. he hasn't broken anything...yet. This forum has been a godsend for me!

By mylove On 2010.03.06 23:33
Hi again all...

You know us, I think, but I'll intro. My PWP is my husband, who also posts occasionally as Shakydog. We've been together for two years, and recently moved into a new, larger, and better laid out home, with the idea that we shouldn't ever have to leave here. Things are pretty good right now, and we hope they stay that way for quite a while. He's still working (and climbing up and down ladders to install Christmas lights!), which is good.

As far as the rest, I'll leave his history to him to tell, and let him know this board is up as well, since he hasn't stopped by in a while.

I myself am here not because I do a lot of typical caregiving, other than the occasional med reminder or to act as a buffer between us and the outside (and sometimes overly demanding) world, but because I want to stay two steps ahead of what is and what may be. I also find that many heads and eyes searching together means the group doesn't miss much in the way of breaking research or new ways to make our lives easier. As for us, we are looking ahead towards the horizon, while still keeping our hand on the tiller, and hoping the good weather holds for a while longer.

By shakydog On 2010.03.08 21:21
Hmmm…… my neuro said that after 11 years, I don't qualify as a young parky. But at 54, I still feel pretty young. And I have parky so here I am.
Hi Al, sorry I haven't been posting for a while but busy busy busy.
I still work 40 a week, although I don't do the physically demanding part of my old job.
I don't dwell on the things I've lost the ability to do… I used to play 2 rounds of golf daily. 5 years ago my daughter was in state h.s. Golf and I couldn't play 9 holes. O well.
Thats my whole attitude - o well. I can P & M about what I can't do or do what I can in the best way possible. And find new things that I can do. I didn't know I could work with wood, but I can make a pretty nice picture frame. I can't work a farm, but I can do a small garden. I can't run a golf course, but my lawn is the nicest on the block. I can't spend 10 hours watching a road project being built, but I can draw a complex project that is wonderful to see.

Keep a good attitute
don't dwell on what you can't do
rejoice in your new skills
ignore those who say you are wrong to try
Don't let the bastard win
today is today.
Tomorrow never comes

By Blaze On 2011.11.01 13:39
As my DH is now 51 and has had symptoms for at least 10 years does that make him a YOPD?

He's still doing everything he's always done, including getting on the roof to clean the gutters and hang the Christmas lights, and it's 2 stories. Scary! Yes, I worry and tell him off, but he does it anyway. He just does it when I'm not watching.

He also makes the frames for my paintings, Shakydog, and does the gardening, though we have 5 acres of bushland so I'm always losing him. :)

I'll try and get him to post on here.

By LOHENGR1N On 2011.11.01 23:57
Blaze, Hi and welocme to the forum. Sites differ on age of young onset some cite the age group of 21 to 40 as young onset others 21 to 50. It's really an arbitrary number but I'd say yes He'd be yopd. I read another of your posts and you said it seems way too young to have P.D. The is also a form of Parkinson's Disease that strikes those before the age of 21 called Juvenile Parkinsonism. By all means please tell Him about the forum and encourage Him to post here! We're all glad to be of any help we can be to Him, You and Your family! The more We learn about Our disease the better We can fight it. Again welcome! Take care, best of luck and hang in there.

By mylove On 2011.11.17 21:21
Blaze, are you the artist? Shakydog is the framer and matter for my paintings - always curious to find a kindred soul.

By much2young On 2012.03.02 09:36
I'm new to the site and new to this entire issue. My 37 year old husband was diagnosed with PD just a few days ago. I found this site as I was searching for more info. We are still in shock and have no idea what to expect. He has been experiencing tremors in his left hand that have gradually become worse over the past six months. After discussing this with his PCP, we waited for over a month to see a Neurologist. We were definitely NOT expecting to get this news...he is so young. She was able to point out additional symptoms that we knew nothing about (eg. when walking the left arm does not swing and balance issues). As I mentioned, there are so many unknowns and I'm honestly just looking for a great place for some support. We are on an emotional roller coaster. We have two teenagers with lots of questions as well. The Neurologist started him on a low dosage of medication immediately to see what might work for him. Thankfully, we have a wonderful research center and PD specialists in our area. The neuro has sent a referral so now we wait. I should also mention that my husband is a full time auctioneer. We know that some patients experience changes in voice. Does any have any personal knowledge?

© · Published by jAess Media · Privacy Policy & Terms of Use
Sponsorship Assistance for this website and Forum has been provided by
by people like you