Re-reading my April 29 post, it doesn’t really describe how I feel about “Living with Parkinsons” at this point. The bottom line is that it frustrating and scary. It’s frustrating in that it consumes my thoughts a huge percentage of the time. For example, every time I prepare to stand up, I have to “cross check” my body to make sure it’s working well enough to stand up. IF I’m sitting at the computer and accidently click the mouse, I have to be certain that no harm was done. If I schedule myself to go out with friends I have to make sure I have all the meds, etc. that I need including hiking cans and portable chair. Longer travel trips I have to think about waiting times in airports, delays, and time zone changes. I could keep this list growing but I won’t for now.
So, what is it like to be in my shoes and what do I mean when I say “I feel good” Generally I wake somewhat stiff and my stride is short. I go to the bathroom and take my pills I can usually feel my body soften as they kick in. I do some stretches and usually try to get dressed as quickly as I’m able to.
Then I have difficult decisions to make. I know I’m at my best mentally and physically but especially mentally in the morning, So do I do my thinking work or exercise. Since much of the exercise is timed meetings or appointments they usually win (and therefore the frustration of not getting things done.)
When I’m home, again I have to juggle mental and physical. Ron usually wants to take an afternoon or walk or I might have yoga or boxing classes, etc. Often I find myself just staring at the computer because I just can’t process what I need to be doing. Even though I’m retired I still have projects want to do.
Evenings are the most variable and that makes me afraid to go out, especially if it’s past 9 :00 to return. Ron and I used to have a signal that if I said “it’s time to go” that means “My meds are wearing off and I must get to the car and home ASAP or I won’t be able to walk to the car” It still works but it takes a lot more prodding. I rarely sleep through the night. Sometimes, but rarely, I wake up and go back to sleep. More often I get up and go to the bathroom and take a sinemet if it’s after 2:30a. If I wake up in the 4:00 hour I’ll often read or turn the TV on.
So at the moment – I would say life is at an equilibrium. I’m in a livable amount of discomfort and actually I’m doing things that I haven’t been able to do for the last 4-6 years. I’m helping more in the kitchen and with chores. I can’t remember when Ron took that over but I think it was after the trip to Krakow, Prague, Vienna and Budapest but before Nava was born. So it was late 2014, early 2015. Among other accomplishments of late – I’ve been able to lift my feet higher at exercise classes and I can finally walk close to a mile without much pain and stand for close to an hour. I even played pickleball a few times this winter. This may sound trivial but these are huge accomplishments from where I was. My two biggest fears are 1. What happens when this comes crashing down on me and 2. What happens if and when Ron has a medical emergency. He’s been great with me (most of the time) but I hardly be there for him (when my meds are low I can hardly talk on the phone). I guess these will become points for the next blog entry.