This is a long overdue update on my “journey with Parkinson’s.” As previously mentioned every case is different. Dr. Barbano stated that progression is usually linear but at the moment my slope is approaching zero and in reality I’m doing much better than definitely a year and up to several years ago in the motor skills, although probably a little (but not much) worse on non-motor symptoms.

So I think this improvement is due to two great neuro physical therapists at Cayuga Med, along with Marla and Jessica in the Valencia Shores gym and Renee and Peggy for therapeutic massage and the addition of amantadine to my prescriptions . (Also Rock Steady Boxing and Pound it Out drumming and various water weight classes) In the past few weeks I’ve been able to cook a bit (I made two great Passover deserts) and help around the house a bit more. I forget how long ago Ron took over the kitchen – it was before Jonathan’s wedding so it’s been 4-5 years. Last year I wasn’t able to do any setup or cleanup for my Chanukah or Pi parties, I almost didn’t do them this year (Chanukah was just us and three others) but I was able to “do my part” to help with the Pi party this year. I even played pickleball a few times this past winter and I was able to meet new people without having to explain my condition (either dyskinesia’s or walking issues). Marianne said it was about 3 months after I met her that she heard I had Parkinson’s.

 But my Parkinson’s is very time dependent and I guess I should try to plan for the worst. I take the Sinemet 25/100 every three hours, even when I wake in the middle of the night. For about a half hour before and after I take the meds, I slow down – both thinking and movement. Some days and times are better than others, mornings are usually better than evenings. I was nervous about our theater subscriptions that end 10-10:30 but so far, so good – I just try to get an aisle seat so I can easily get up if I panic. When I get up in the middle of the night, I often use the walker to get to the bathroom and while over the past few years I used my hiking sticks, walker or even a wheelchair in public,, I’m generally just carrying (and later in the day using) the hiking sticks. I can walk between 1/2 and 1 mile without pain in my center back. When the pain starts, I sit and stretch for a few minutes and then keep going . I usually request a wheelchair at airports but cancel it if I feel good when I get off the plane.

The non-motor problems bother me more. Maybe I read too much but I’m constantly second guessing my thinking so some of this may or may not be “real” but it’s real to me. I have to think extra hard to remember things, I try to make notes but when I can but when the meds are low, I can’t read my writing no matter how hard I try. I forget where I leave things and I know I’ll but something somewhere temporarily, telling myself I’ll get back to it. This is especially troublesome if it’s a computer file. (An unplanned project for this summer is to reorganize my files across cloud and regular drives)

We are constantly busy. The exercise schedule takes a lot of our time. In NY we are out M-F mornings and Ron is out a few nights and in FL I have water weights 6 mornings a week and I have afternoon classes three days a week and Ron has a few evenings too. That leaves little time for hobbies and other recreations like cards, mahjong, etc. It’s frustrating.

So please be patient if I don’t get things done as fast as I should – I try to do as much volunteer work as I can but I try not to commit to time sensitive tasks. I hardly sleep more than 5 hours a night and I often wake up very stiff but in general, I’m in a good place right now. We did an excessive amount of traveling from August 2017 to October 2018 but this year we are just going to a Parkinson’s conference in Japan in June and a cruise to Key West and Havana in December. We have a cruise out of London in August 2020. I’m planning to just bring the sticks to Japan – hopefully it will work for me.