I’m all signed up to be a support group leader/ facilitator for another disease support organization!
I think I’m excited about the idea, not sure yet.
There are 3 neurologists in my town, plus 3 more an hour from here. So far I only know of 4 people with my same condition who are within drivable distance of my town.
Most of us post on Facebook with support questions.
Anyway, they have sent the support manual to me, that’s 50 pages, and I can order pamphlets for distribution at the neurology clinics and support meetings.
I see the support organizations in the Chicago area have 2 hour meetings with guest speakers every quarter. That is what I’ll shoot for.
I have decided to volunteer with a mental health charity as well. I was listening to sz admin and he posted about Dr. James Mcleod (i think thats spelt right) who is doing peer support work as well.
I was hoping those jobs would be paid but i guess not. Hopefully there will be some other perks out of it for you.
The perk I was hoping for is life itself. I have a very rare condition, and when it flares I’m scared to death of the hospital.
The damn mental health workers get called and I’m accused of having the delusions that I have double vision or cannot swallow. Nobody’s ever heard of my disease. Including the hospital doctors.
