Update for 5/30/2011

Hi Everyone:

Sandy and I didn't do a whole lot that was very special for the weekend, but I do have a positive report on my health. For each of the last three nights I've had a full night’s sleep, eight hours or thereabouts. I've been refreshingly clearheaded over this time. There are the occasional bouts of dizziness, but for the most part, I have felt better on these three consecutive days than on any other three consecutive days for months. In terms of movement, things have been fairly static and generally not too bad. It's the cloudiness in my head that causes me the greatest problems and concern. And whether it's sleep or adjustment to the medication or whatever, my condition has been much easier to deal with over the past few days.

I wish I could account for this improvement by progress in record and play of the Kansas City Royals. That's not been happening. Perhaps my improvement is due to a change in exercise routine. I have added some shadowboxing to my regular NordicTrack regimen, thanks to our Wii system. The aerobics, the balance, and the continually shifting footwork would seem to me to make this a good exercise. I'm having fun with it, anyway.

We DID see Bridesmaids this weekend. It's REALLY funny and definitely worth the money. On the other hand, I don't recommend taking your parents to see this one with you; or your kids either for that matter.

Thanks for staying in there with me. I'll have a new report next weekend.

Marc

Update for 5/23/2011

Hi Everyone:

I've had another pretty uneventful week. The best news is that Alyssa came back from Chicago where she just completed a six-week clinical practicum in physical therapy. Now, she's staying with friends in Lawrence who were celebrating their graduation last weekend. Sandy and I went to Lawrence yesterday to join the celebration.

That's a nice segue to the only real health events of the week. I attended my students' graduation ceremonies all day on Saturday. My head hurt, I felt dizzy and a little nauseous most of the day. I can't be certain that this feeling isn't due to the medication, but I don't know why it's so variable. In any case, we had some rough weather Saturday night; I was woken up by sirens, and we had tornado warnings for our county. That limited the sleep I got Saturday night, and I expected to pay for that all day yesterday. As it turned out, it was a great day; although I was sleepy, I felt pretty normal and, especially, clear-headed. I went to work in the morning and got a lot done. That helped me to relax throughout the afternoon and evening.

So, it was a really good weekend made especially so by Alyssa's safe return. The new week has started off positively, as well. I didn't sleep too well last night, so I'm sleepy this morning. On the other hand, I feel clear-headed and am looking forward to another good day and week. I hope you have the same.

Thanks for checking in.

Marc

Update for 5/15/2011

Hi Everyone:

I have little to report this week, so I'll be brief. Each day brings its challenges. Some days like today, I can do my work, exercises, chores around the house, etc. without much disturbance. I'm certianly not 100% of my old self, but with a little extra time, I can manage just fine. Other days, like yesterday, I just don't feel up to much. I did get a lot done yesterday, anyway, but I had the strange feelings in my head throughout the day, and I felt a bit nauseous most of the afternoon and evening.

My sleeping continues to improve, if not normalize. I still rise fairly early in the AM, say 2:00. I have just gone to taking an Ambien at that time and it helps me get another 3 or 4 hours of good rest. Fatigue is usually not a major issue; I hope we can continue that.

Classes are over tomorrow and I get a brief reprieve from that now. It's a mixed blessing. Teaching is one of my great challenges now, but it also seems to provide me with a lot of energy. Except on really difficult days, the teaching helps to keep me focused and is a source of great pleasure.

Thanks for tuning in. More next week.

Marc

Update for 5/10/2011

Hi Everyone:

Things have gotten so busy at work here at the end of the term that I forgot all about the blog. I hope I didn't inconvenience anyone. I don't have much to report or anything particularly clever to share with you, but I'll give you a brief update, largely just to document things.

Although I still feel the disease in my shoulders and legs, the medicine is clearly still working. I have much greater functionality of my hands than earlier in the year before the medication. This is good because it facilitates the typing I need to do when I can't get things done just with the speech recognition software. Physically, I feel like I can get done what I need to get done, and things are going pretty well.

Where I get frustrated is with the perceptions I have in my head. When these are mostly inactive, I really feel pretty good. Mornings, after a good sleep, are the best times, and the times I feel that most normal. Right now as I write this, I'm pretty comfortable at my workstation at work. Later in the day, however, the symptoms seem to always return. I feel a little dizzy, there is what feels like sinus pressure right behind my nose, pressure in my ears (this feels like I'm on a plane or cruising the mountains), and pressure or even a soreness in my jaw (as if I have hyper-extended it or I've just been talking too much). To top off this little cocktail, I sometimes feel a bit fuzzy on top of my head, like sometimes when I have the flu. Any combination of these symptoms is pretty distracting and bothersome. When I get these in the evening I just want to get in the hot tub for 20 min., do my Qigong, and go to bed. So the cycle begins.

That's all I have to report for today. Sorry I couldn't be a little bit more interesting and fun. Before closing, though, I should point out that Sunday, on Mother's Day, Sandy took me to a Royals game. It brought back old memories. We used to go to 20 games a year, and we dragged the kids along with this (well, Marshall can willingly; Alyssa, we dragged). Sandy did some of her best mothering keeping Alyssa occupied while at least a little bit keeping her own head on the game. She was one hell of a sport, I'll tell you that, and it was really special thinking about those old times at the ballpark.

I promise not to be so late next week. Until next time.

Marc

Update for 5/2/2011

Hi Everyone:

I'm late with this posting, as seems to be the usual lately, so I hope I didn't miss anyone. A lot of things have gone on this week that are significant to me.

First, I played in the Lenexa SERTOMA Club annual golf tournament on Wednesday. I haven't played a round of golf since January, which was before my diagnosis. I played in a foursome with my golf buddy, Hugh Catts, and two women from KUMC, Deb Brogden and Lou Loescher-Junge. We were a terrible team, but the company was great. It felt really good to be out on the links. I was able to stretch my legs and get some exercise, and my golf game was actually better than I expected. (For those of you who don't know, I have always sucked at the game, but that has never stopped me from playing). Mostly, it is good to know that if I want to play golf, PD is not a barrier; at least not now.

Second, Sandy is making sure I get out and see a little of the world, rather than wasting away in the house. We went to an art festival yesterday and then attended Monty Python's Spam-A-Lot last night. I had a really good night of sleep on Saturday, so I was well prepared for yesterday's activities. The art festival was fun (but freezing), and Spam-A-Lot was hilarious. See it if you have the chance. It kept me awake for a pretty late evening, and I didn't sleep well last night, but so far, so good this morning.

Third, I have had some concerns about my medication, Mirapex. The recommended dose for me is two .25 mg pills three times daily. That has never felt right to me, and my doctor told me it was acceptable to spread the six pills out over even intervals during the day. Recently, I've worried that the modified dose frequency was not doing the job either. So, I tried the recommended dosage again. Again, that didn't work. Neither the initial surge from first taking a dose nor the lasting effect of the dose was acceptable. So, I switched back and right now seem to be doing rather well again. Mirapex doesn't have as many side effects as other drugs, like levodopa and carbidopa, so it would be great if I could hold off on those drugs for as long as possible.

Fourth, after reading my initial post, my friend and PD researcher, Lori Ramig, sent me a video about an exercise program called LSVT Big. LSVT stands for Lee Silverman Voice Treatment. The original treatment is a voice treatment; it is now called LSVT Loud. I've known about it for a long time. LSVT Big is the new kid on the block and the new offering from LSVT Global. Lori sent me the website for LSVT Global, http://www.lsvtglobal.com/, and encouraged me to have a look. You can see for yourself what the program is about by checking out the videos on this website, but the basic idea of both programs is to challenge the constraints PD places on movement, posture, and balance. While these constraints lead to small, slow, restricted movement, the program encourages high amplitude, high intensity, high effort movement in direct opposition to the constraints of the disease. Basically you practice motions and postures that challenge what the disease is trying to make you do.

To make a long story short, when I first logged onto LSVT Global, there were utilities there to help one find certified instructors. At that time, however, I had no success in identifying anyone; even an instructor in some faraway, hard to get to place. The system just seemed to be down. This week, however, I checked, and not only are the utilities working, but I found a certified instructor at Lawrence Memorial hospital in Lawrence, just 45 min. or so from my house. I have made contact with the occupational therapist who has the LSVT training, so it looks like it could be only a matter of time before I can start the training. My mobility at this point is not that affected, but I want to do everything I can to slow down the effects of the disease and, wherever possible, to reverse the damage done.

I've already taken these ideas to heart. For aerobic exercise, I really still enjoy the NordicTrack, and would like to continue using it. I've modified my workout, however, to implement some of the ideas from programs like LSVT Big. The simplest change, for example, is to increase my stride and to increase the length of my pull with my arms; in other words, to increase my effort and the amplitude of my movements. Interestingly, this has implications for balance and postural adjustments, as well. A longer stride means I have to adjust my balance to that side in a more intricate manner that is otherwise necessary. It's actually fun getting more glide, just like it is on real cross-country skis. I have found that I can facilitate all of these processes by adjusting my stride to the rhythm of music I listen to as I exercise. If you haven't heard the Avett Brothers, I urge you to have a listen. (Thanks to Brad and Shelley Oja for turning me onto these guys). For my money though, their recent album is terrific. It has a really nice mix of simple rhythms that challenge me as I ski. I can move in single time or double-time or a mixture of the two for a nice change of pace. I find my workout time passes much more quickly when I do this than when I watch TV, and I make far more challenging movements with my skis. At some point this could be hazardous, but I'm really comfortable right now.

Okay, I'llgive you a break in stop now. I'm sure I lost my audience long ago. But the NordicTrack workout is just one example of what I'm trying to do to battle my disease process as best I can. I walk big (to Sandy's chagrin), I Qigong big, and I'm trying to think big whenever I move.

If you see me acting small, please slap my wrist. Thanks for being there.

Marc