How I am doing, adapted from a few letters to friends and relatives: basically well if sometimes a bit frustrated, with only occasional moments of terror (;-)
I was never a couch potato before, but my undiagnosed symptoms slowed to stopped me for almost a year and I had to work to get back. Now of course I am rather at the other extreme, but there are worse things to be. Fitting it all into ones’ schedule may be the hardest part even for childless under and self- employed me. I start with about an hour of stretches and the mile walk every AM (and first I must wake up, take meds, and have serious coffee, usually over the computer). I also do half the pigeons and all the hawk work, and some of the dog walking; Libby the other animal chores, most of the garden, and (infuriatingly for me if not her) has more or less taken over cooking because of my lack of dexterity and slowness. She of course also works more or less full time.
Then at 530 MW &F, I go off to the gym for an hour to work out (after a second lunch to keep my weight up–a new one!), returning so pumped up and high on endorphins it usually takes me two stiff vodkas and an hour before I can relax enough to eat! Then, though I am sleeping through the night for the first time in years, it usually takes another drink or two before I can fall asleep at 12 (I get up at 6 and am NEVER tired; before this exercise regime, at least for my “sick year”, I was tired all the time and nodded off constantly– go figure!)
Oddly, the meds, which I take at meals, give me two quick sleepy periods right after; coffee apparently blocks this– thank God!– after breakfast.
(On the gym; a ridiculous success so far. It is still improving, and not all that slowly. I was warned that though the weightlifting would probably help my general condition and strength, and stop or roll back symptoms, it might not affect my minor motor movements. For instance I would still type badly, which had been a problem, since I kept hitting the wrong keys. But a few weeks after starting lifting weights, I became able to type again, at least until I got tired– certainly well enough to write letters and notes. I think that the dictation software will be a lot of help for professional– length work, at least once I get it trained. But though I find the high–tech software exciting, I am even more amazed that being able to bench press three eight- rep sets of 180 pounds makes it easier to type. I am always enough of a naturalist that neurology astounds me more than technology).
After less than six weeks of this regimen (not JUST the weights– stretches & meds too of course), I have not only gained back the 20 pounds I lost during the last nine months or so, but added another 10, all pure muscle as far as I can tell. I probably have the best muscle tone I have ever had. Tremors often don’t even start until evening and are minor then. Cramps are almost nonexistent. And I am sleeping the best I have in years. My appetite is ridiculous. I can walk without the Parkinson’s shuffle. Everyone says I look great, including people that thought I was dying six months ago.
Exaggerated? Sometimes I don’t believe it myself, and I still get bad moments– the road is sometimes bumpy. But consider my inspiration for finding out about this “therapy”, Mark “Flyover Country” Churchill’s uncle, whose ambitious weight program i showed to my instructor– after 20 months, he’s painting again!
Between all this, I have to find time to work (and correspond and blog, which feeds it) and do things to write about– well, I have memories and notes for my Asia- travel- dog book already done, so that helps.
But the “how” is still being worked out because I am physically slower– must find the right tech. The dictation software is the long- term thing I think and I am already using it even for long letters, but the right hardware becomes vastly more important when you are not 100% functional. I have this ergonomic wireless keyboard I like, but they are not cheap, break easily, and I am on my 2nd in 6 months. Two days ago my space bar started sticking so that it either made nospacebetweenwordslikethis, or, if I SLAMMED it (and broke my rhythm, which any writer can tell you is an obstacle to saying what you are trying to say), it made looong spaces, like this. (Apparently Blogger won’t allow the illustrative two- inch break I wanted to put there!)
So I got out this regular keyboard, which we got in trade for something from our Mac maven in Socorro, who must have 50 computers– a real geek’s geek. It types fine, but the mouse, which I have never used, is FUCKING IMPOSSIBLE- I just can’t click it, and it has a translucent panel on it that, if I touch it, instantly bounces me to the top or the bottom of the page. WTF?? It is so bad that I will write my letters in the AM with this board (maybe cutting and pasting things of interest–like this?– into notes to other friends!), then put back the other keyboard in the afternoon and use the still sometimes surreal voice control (I am tempted to keep a log of its suggestions, including “church” for perch and “hugging”–!- for hawking), which should hopefully minimize my use of the space bar as much as possible. Write until late afternoon, feed the falcon, lift weights, begin again.
Only a perpetual half- day behind, as usual. And I still have to go to Socorro and get a different mouse, and/ or either fix the @#$%^& space bar or replace the board!
Seriously though, present problems are lighter than any for an age; many are funnier than sad. As my friend the Montana mystery writer and fellow pauper Peter Bowen says; “Writers! Whine, whine, whine– we’ll be rich when we’re dead!” If I get my tech refined, become able to walk another mile a day, maybe get a shorter range hawk for fall or drink a bit less vodka (though my “new metabolism” seems to burn it right off, not like last depressed year) I’d feel I was improving even more. And if I ever sell the Asia- dog book– or even “revive” Querencia- the-book– a whole other project I’ll talk more about when I figure more out but which I think I can do, at least in NM– I would feel like a success, even with Parkinson’s!
Enough of what Libby calls “the organ recital”– I’ll keep it rare, but people have been asking. Besides, time is pushing on me– no more blogging for now, as I must feed the hawk and go off to the gym!