I’m still celebrating the holidays and taking it easy at my sister’s house in Wichita. On Friday, I drove down to Wichita to pick up my dad and take him back to Kansas City. Shortly after we safely returned to town, Sandy and Alyssa went to the airport to pick up Marshall. We felt so fortunate to have my dad in town with the whole family for another Christmas day. We had a special time and hope you did, too.
Sandy sent out all of the Christmas cards the day before Christmas Eve, and the cards promised an update on my health for those inclined to venture to the hinterland to read my blog. Really, there’s been very little change in my condition over the past several months and year. When we’re talking about a progressive disease, like Parkinson’s, this is good, not bad. As promised, however, here’s the latest.In my last post, I reported that I was trying a new form of the drug, Mirapex, which had just become available in an extended release form that is taken once a day. I have decided to use the far less convenient, but far cheaper alternative form of Mirapex, still available in generic form. This is usually taken in a dosage of two pills three times per day. Instead, what works best for me is a dosage of six single pills distributed fairly evenly across the day. I would miss at least half of my pills if it weren’t for my cell phone, which I program to alert me all six times. I then take a pill as soon as I can, giving me an even concentration across the day and evening.
With this regimen and a once daily dose of Azilect, I feel much more normal and far less symptomatic than without the medication or with any other dosage I’ve tried. It enables me to carry out virtually all of my professional responsibilities at work and do my chores and generally help Sandy out around the house, as usual. My typing is not normal, but before starting medication for Parkinson’s disease several months ago, I really hated to begin a letter or a paper or even an email; it was that difficult to hit the right keys without producing multiple letters or omitting letters in an effort to avoid the heavy, uncoordinated keystrokes. Now, there’s rarely a project that I defer out of consideration of typing problems. I have also gotten more proficient at using Dragon speech recognition software. This is even faster than I used to type; the only problem is that the program sometimes generates wild errors; for example, it loves to interpret some of my breathing or other random noises as WILL WILL WILL or HIM HIM HIM. This is mostly a problem for email, because I’m more apt not to pay it much attention, and I’m less likely to edit carefully. I apologize for this if you’ve seen it in one of my emails, and I’m especially sorry when the program’s interpretation is truly maniacal; I’ve seen some pretty psychotic-sounding ramblings in emails that I failed to edit adequately. Trust me, if you see this, it’s a reflection of my immature use of Dragon rather than my “other voices" talking.
My movement symptoms, then, are relatively unchanged; most of the time, I have the feeling of being a bit low on sugar, or cold, to the point of shivering. In short, I’m a little shaky with my arms and hands and even torso, at times. These symptoms are bilateral, and they don’t really change when I make intentional movements. My legs are not affected as much, but if I miss a dose of medication, they may feel tired, as if I just got through with a tough workout. I played a couple of sets of tennis today with members of my family, and I didn’t play much differently than ever; my same old bad game. But this is a good indication that I’m hanging in there in terms of my movements.A general symptom that affects my daily life more directly is fatigue, or sleepiness. I still feel sleepy much of the time, and this generally gets me in bed by 8:30 and asleep by 9:00 or before. I’m having much greater success falling asleep than I have had in the past, but it’s not unusual for me to be up by 2:00 – 4:00 AM, unable to fall back to sleep. At these times, I'm at once sleepy and sleepless. Since I’ve been off for Christmas, I’ve been faring much better in this area, and I’m hoping this is a trend that will continue into the new year.
To manage these movement and sleep issues, I work out, using either an elliptical trainer or my Nordic-track for about 45 minutes a day. I usually miss a day during the week, but try hard to be faithful. There’s no hard evidence that this makes a long-term difference, but there’s a growing body of weak evidence that exercise done to the level of exertion can diminish symptoms. It’s easy for me to believe these reports, because they are so close to my experience; if I’m a little shaky, a session on the elliptical machine can make me feel much better. I’m under no illusion that I’m beating the disease this way, but this, along with the Azilect, could be slowing things down a bit.The symptoms that are most troubling for me are most like those I associate with a severe sinus headache. This comes on several times during the day, and I’m certain it’s not directly related to the medication I’m taking. My head feels full and under pressure; sometimes I’m a little foggy and even a bit light-headed or dizzy. This slows me down at work, especially if I’m trying to be creative or to solve a difficult problem. The hardest thing for me to do is to put down the work at these times, take a brisk walk, or go home and exercise; these are the best solutions to the problem, though, and I’m getting better at taking my own best advice.
That’s pretty much the latest. I’ll publish another post after my next appointment with my neurologist in February. In the meantime, my spirits are still high, and I look forward to each day, as usual.Please refer others interested in my condition to this blog. I thank you again for all of your concern and support.
Best,Marc
