To be perfectly clear, this blog is not about whining. It is about the windmill I joust with. It is about the long, pointy stick I tangle in the blades to try to keep the windmill from swinging back again and again toward me on my old, sway-backed horse. If I feel like Don Quixote maybe 23% of other Parkinson's patients also feel like Don Quixote. So this is for them, and for the curious or the knowers-of-other people with Parkinson's trying to get inside their skins to understand. It IS like I said about the riding-the-motorized-grocery-cart thing: humiliating.
I have noticed that if you ride the motorized grocery cart, you become somewhat invisible. A few people can see you, and make eye-to-eye contact, pause just as they would if you were about to intersect one-another's paths while walking, etc. But while I'm venturing percentages, I would give it a 65-75% chance that the lady standing there staring straight ahead at the milk section of the glassed-in frige is going to keep staring straight ahead for as long as it takes for you to grow impatient and say, "Excuse me." Her peripheral vision which appears to otherwise work without fail, does not work if you approach her personal space, which now extends about 10 feet in every direction ending at the glass door. You don't really want to run into her with the motorized cart, so you hang politely back. She is thinking about her home in Ontario, or New Zealand, or Queens. She is far, far away. No, maybe she is a nuclear physicist and she is really concerned about the possibilities of collateral damage to a reactor during an earthquake, and she is onto a train of thought you just don't want to be the one to interrupt at a time like this. Oh, heck, you know there is probably radiation in the milk anyway.
Well, I went back to see my wonderful Neurologist. By the time I got there, now about a month ago, I had taken Aleve regularly for about 3 weeks and the swelling was significantly decreased in both feet. We talked about my new program, working with a personal trainer and doing core strengthening exercises at the gym. At the previous visit she had suggested I try backing off the Klonipin which had been prescribed for sleep, and since I was on the lowest dose I thought it should be no problem. I had forgotten how miserable it was to never, never sleep all night.
So I did. I weaned within 2 weeks. Then I stayed awake for about 4 days. Then I started back on the Klonipin, called her office, and left a message. We played phone tag for several days, her nurse and I. After I finally spoke with her nurse, we left it at sleep was good. I realized she still did not have a copy of the original sleep study so I put on a sticky note to call my Internist's office and have them send her a copy. The findings were that I woke regularly though the night and when not awakening fully came close to awake about every 10 minutes, no kidding.
Now that this is a surprise to anyone is also a surprise to me, considering the pile of literature almost casually mentioning that it's part of the deal. Sleep disturbance is a REGULAR part of Parkinson's. Everything you read about it describes it as a presenting symptom, often not connecting the patient yet to the diagnosis of Parkinson's. Mine began probably 8 or 9 years before the diagnosis. It wasn't that bad yet so I could explain it away and ignore it.
Anyway, I am now back to believing I am asleep when I am in fact still talking and having active dreaming, but feeling significantly less tired in the morning. Can't say that I know I'm getting more sleep, because another sleep study would mean a lot more $ and this is getting kind of expensive for a disease better than an MVA or a kick in the head.
Twice during the day I have "gorked" episodes when the Carbo/Levadopa hits a peak, and I surrender to another episode of the Waltons or watch the Borne Identity or Napoleon Dynamite until I drift off to sleep for a half hour or so, then wake ready to resume a sort of foggy first half hour and a more normal next hour or two after that.
I save the 3d dose for bedtime hoping it will act on the foot, but since I have a (flash!) NEW SPOT on my right foot I've been nursing along since I told the nurse, "No, no I don't want to come back in. It's OK, I'll be fine, I can't come in and take up her time for every little thing." The subject then was sleep. That worked out, but the foot went south as soon as the sleep got better. It's like the muscle contractions look for a new home once you get the old site to sort of simmer down.
I don't want to live on Aleve, but I'm back on it, as I said, and in about 3 more days should be able to stop, I think, and go back to the gym and the bicycle.
Everyone has their favorite health hobbies. My personal trainer wants me to see a Chinese Herbalist. I don't know how to tell her that I am not capable of trusting any substance that may have a second dose of what I have already painstakingly worked through in the last 3 years. When you explain to people that many of our modern medicines come from tribal and regional medications known to have some positive effect on a given disease, they fog over. Go right off into a trance or to that place in Burma where the Eat Pray Love Girl went to meditate.
It's more exotic not to know what the med does, and it just shoots it all to heck when somebody breaks down that mystery by putting it in a clinical trial. Hate it when that happens, don't you? Like when they go to the Amazon jungle and find out some tree sap is what the locals use to prevent athletes' foot, so they take it home, analyze it on a petree dish and isolate what works, reproduce it in mass quantities, make it affordable for the average American, and call it something like Lotrimin AF. Then somebody gets proprietary rights for 7 years for the synthetic or isolated substance. The stuff in the scorpion tip that actually does have an effect on Parkinson's is probably among the several different drugs I've taken or am now taken. And the natural/herbal med crowd denounces the drug companies for charging $1 a pill, while the Chinese herbalist (who is a Caucasian from Detroit) continues to charge $85 an ounce for it.
No comments:
Post a Comment