Hello, I'm a new member and very happy to have finally joined!
Someone near and dear to my heart ("Drevy") suffers from PD and I am trying all that I can to be supportive and help him cope with this. For a long time I've wanted to start a Young Onset PD "support group" and the time has finally come! I would like to start meeting once-a-month and eventually maybe work our way up to every other week or so.
If you or anyone you know (up to age 55) in the South Florida area would benefit from these meetings and would like to join us, please let me know. I don't have it all planned out yet but once I get an idea of how many people are interested in being part of it I will put it all together and take it from there.
LOOKING FORWARD TO HEARING FROM YOU SO WE CAN GET THIS OFF TO A START!!!
Written by
sAMERICA
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I am not in your area but can see how a young onset group would be helpful. My suymptoms visible sympltomes starte around age 40, wook 8 yrsl to diagnosis.
We set up one over here in Cornwall and I found the best way to go about it was to enrol all the health professionals to get a letter drop to their PD databsaes and then just to declare yourself a group.
If we had asked people to consider joining they would have thought for so long it wouldn't have got off the ground.
I circulated letters and permission to e-mail forms through the Parkinson's nurses, the local Parkinson's UK support groups and through the Parkinson's UK paid staff in the area.
It has been going 3 years now and I like to think we have made a difference to peoples self esteem and lives.
If you want to see any of our contact material just message me. Best wishes
Yes, it's good when the med pros invite people to join. Our groups here in NYC are organized by the social worker and NYU interns and then pwp's by word of mouth. Otherwise like rounding up gang of snails! I was asked to help with the Parkinson's Walk .
LOL! very funny... "like rounding up gang of snails". Love it when we can find the "humor" in even the worse situations. LAUGHTER, THE BEST MEDICINE!!!
Thanks Soup! I've also reached out to the social worker that works with his neurologist. Due to the "privacy law act and patient confidentiality" it's a bit of a challenge to get other patient's info but what we're doing is giving THEM (the doctor's office) the permission to share our info with any patient that might be interested and ask them to have them reach out to us. It's work in progress...
Three years... that's awesome! I AM SURE YOU ARE MAKING THAT DIFFERENCE!!! That's what is all about.
I also do not live in your area. But I was diagnosed at age 52 and I am now 62. I feel more comfortable around the younger people, especially since I am still very active. Yesterday someone told me 60 was the top. That would still lieave me out, tell me if am wrong to feel this way? I have not been to my local group yet but I am interested in your comments?
NO WAY!!! By no means are you wrong to feel that way!!!!! Listen, "age is just a number". If you feel more comfortable with a younger crowd and if you're still very active then I encourage 150% to find a local group and go for it and if there are none, how about "grabbing the bull by the horns" and starting your own and you setting the age parameters. No one can tell you no, right? You set the rules and just go for it!
My husband is 45 and was diagnosed five years ago and when I've suggested joining a group he says he would if there was one near by but with "young" people, because in his case he thinks he would feel more comfortable with them as opposed to an older crowd. I totally understand but there's no "young" groups around our area, which is why I figured we'd have to start one of our own.
Best of luck and keep me posted.
p.s. If you're ever in the area YOU ARE VERY WELCOME TO JOIN US
We know YOPs who are 55 and act like they are 70 and YOPs who are 68 who act like 45. We define our group as one for people of working age and the way our government is going nobody is ever going to reach pension age! However, it encourages people who are fairly newly diagnosed to get out and meet people without the worry of meeting those who have the more advanced signs of Parkinson's.
Many YOPs go on join the 'grown ups' groups once they have come to terms with socialising again in the YOPs meetings.
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I was asked to help with the Parkinson's Walk .
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