Good ol' Sheila, always understanding. There's a saying, "Denial is NOT just a river in Egypt!" Sheesh. Here's the thing, I was just getting so frustrated, I wanted an easier life, with no more juggling, no more physical inconveniences. I really, I now understand, need a DBS/YOPD support group in my area, but in ten years of looking, I've had no luck finding anything other than a general PD support group--and all the very nice people in that group were, well, just not dealing with the same things I am. Is there a nationwide list, I wonder, of support groups for YOPD, DBS patients, or people wishing to start one?
There was one area in which I kept connected...
A year or so ago, a young man posted about his struggle to get a diagnosis and, being very young he was a little impatient with the responses he was getting and, I think it's fair to say, was frustrating some on the forum with his, shall we say, "youthful impatience." I sensed how frustrated he was becoming and, when he stopped posting altogether I found myself worrying about him. I reached out in messaging and gently offered to hold his hand. We exchange texts these days when significant things happen, or just to check in... He has since married, continues to work, still struggles as I guess we all do, but he calls me his PD Mentor and reaches out when he is worried about something, or just to say hello. I only mention this because I wonder if we might start some sort of YOPD/PD "mentoring," thing in which interested parties can post their personality profile and other persons can reach out in messaging or something? A sort of, "yopdmatch.com" kinda thing? Just a thought. Probably a bad one.
Dx 2004, age 45. DBS surgery, 2009: Bi-lateral STN placement; wires to one battery - on my left side. Battery has sustained for 7 years and counting; but I anticipate needing a new one this year (2016). Zero Sinemet CR daily (this took six and a half years to accomplish). 300mg Amantadine daily. 30mg Cymbalta daily. SPS: Right. I invite communication with anyone who wishes to discuss DBS, PD, or any related topic; my email address is: firstname.lastname@example.org - email me if you'd like my phone number.
"Be kind, for everyone you meet is fighting a hard battle." --Plato