Parkinsons and WPC2019 – Summary

So, I’ve had Parkinson’s for 14+ years and I don’t know why or how  but for at least some part of the day I’m doing the best I’ve been doing in 6-7 years or more.  I am usually pain free for at least some of the day.

However we know that Parkinson’s is degenerative and anything can happen at any time.

Since I was doing so well, I decided to leave the walker and wheelchairs home and just take the hiking sticks and three leg stool chair. I left the reservation for wheelchair on file just in case.  I think I only used it on the Hawaiian Airlines flights at Honolulu going out and  the Osaka airport coming back.

Kyoto is about 13 hours ahead of us so my strategy with my meds was to continue taking the Sinemet every three hours and then take the other related pills at their regular local time.  On the second day I was shaking a bit and realized I was low an amantadine and Requip.  So basically I managed with the meds.  I had a problem though starting  a day or two before the end of the trip.  I started getting bad dyskensia’s which I haven’t had in two years ago.  Doc said to wait until I get back on the regular schedule and he was right it went away and when the pain isn’t there, I’m as good as I can be.

My fear in attending an event like this, besides the travel is what if my meds give out at the wrong time.   That happened a few trips ago in Detroit. After I said I don’t need the wheelchair from the airport, I crashed and had to force myself to walk  to the next gate.  Sometimes if the meds give out I get scared and angry if I can’t find Ron.  I’m aware of this and try to control it but sometimes I can’t. If the meds are giving out I can’t take notes or if I do I can’t read them later.  I just feel so helpless and hopeless when this happens but when the meds work, I’m generally good except for the fear of what might happen in the future.

All in all I made it and will probably do it again.  We’ve booked three round trips to Lake Worth for the Fall/Winter and a cruises for Dec 2019 and August 2020 and I’m going for training to be an Aware in Care Ambassador, an advocate for Parkinson’s to the medical community.