Who is in your Parkinson’s ‘village’?

[Waldo]

I’ve been very fortunate to have a long term therapist who meets with me monthly. I was diagnosed twelve years ago and I’m progressing slowly like my father. I even have similar symptoms. My grandchildren have played on his office floor. We met more often when my parents died. He knows the dynamics of our family very well.

He retired from his teaching position and moved to be closer to his children. I guess we can resort to Zoom, although I feel like non verbal clues are very important to his inventory.

I have a minuscule village and I plan to keep it this way.

[Ally]

Thanks for sharing, Waldo. Your therapist sounds like a very important member of your ‘miniscule’ village and I hope you can stay connected for some time yet. It makes a difference when someone like that understands your full history and context.

[Tom1959]

I find your question interesting because I’m in the process of trying to put together such a list. Would love to collaborate with you if possible to share our ideas.

[Ally]

Thanks, Tom – that’s kind of why I asked the question and I’m hoping others will share their experience so we can all learn from each other about how to build up the support around us.

[JackieHC]

I’ve had PD for almost 28 years now, and for most of that time, been active in all of the national groups in some way. This means that I have a not-quite-global village of friends who know exactly what I’m talking about. Some of these folks I’ve never met in person, but I consider them to be close friends nevertheless!

[Ally]

That’s amazing, Jackie! I know you said you haven’t met all of your global PD friends, but have you met some of them? Do you organize meet ups at conferences or visit each other in your hometowns? Do you have any advice for folks looking to build an online/long-distance support community?