Living with Parkinson’s – social scene

I started this as a post on Patients Like Me, a Parkinson’s support forum, but I felt it worth sharing in general too.

It’s been about two weeks now that I’ve been feeling somewhat better (after over two years of pain which started on an extended walking tour in Eastern Europe.) Of course with less back pain I still need to deal with the stiffness cycles from PD.    (My sinemet lasts 2 1/2 to 3 hours depending on brand. )

I’ve had a great PT and chiropractor helping me and I really think acupuncture made the final hurdle possible and I plan to continue that as I move south for the winter .  I know, however, that the exercises must continue regularly. The problem is I have a fear of getting better.   For example I’ll walk 3/4 mile and be afraid that I can’t get home.  Actually I did have to have hubby get car one day because I felt I was in too much pain to walk back.  But I wasn’t sure myself if it was real or just panic.

I’m also afraid sometimes of going out with friends and not my husband and having a breakdown if a pill doesn’t kick in correctly. In Florida I’m less dependent on my husband for transportation.  Typically I do water weights and/or yoga in the morning plus the recombant bike in the gym.  I’ll probably play cards at least one afternoon a week and then misc events around the area.  I might try Rock Steady Boxing.

I’ve had my share of dinners out with dyskenisa but I worry about getting panic attacks in public too.  Early on I had a deal with hubby that if I said “It’s time to go”. It meant NOW. NO QUESTIONS ASKED. but now he often pushes back and says “relax and get over it, you know you meds will kick in”.

I’ve spent my whole life feeling socially awkward in one way or another, I just want to relax, feel accepted by my peers and have fun.