My Symptoms and Exercise Regimen

In this post, I thought I'd describe my medical symptoms and exercise regimen. In general, my goal for improvement focuses less on strength but more on balance and coordination. Today's entry is of interest for those who wish to learn more about about these aspects of my condition.

The most significant symptom is that my balance and upright walking have progressively worsened. I can and do use a walker on occasion. However, when at home, traveling and going outside in the evenings I mostly use a wheelchair. The second most severe symptom is fatigue. A long day is just beyond my ability, and I need a midday refresher nap to restore my energy for the latter portion of the day. Multi-tasking is out of the question now.

MJD has a significant impact on matters relating to the senses and speech. I slur my speech as I become more tired. I'll also choke on certain foods - spicy, hot, especially flaky in particular - if I'm not careful. I also experience double vision. I have prisms in my eyeglasses that help with distance viewing such as the TV. Age complicates reading small fine print in dim light, but I can still manage without glasses. I also have horizontal nystagmus (rapid, involuntary oscillation of the eyes). This is one major reason why I no longer drive.

I am now more sensitive to temperature extremes. I tolerate the cold less well than heat, which is why I prefer traveling in summer over winter. I also have poorer fine motor skills. My handwriting was not that great to begin with, but it is clearly worse now. I often write in caps to improve legibility. I do have more uncoordinated physical movements now; I'll avoid filling a glass of liquid too full, and I can't throw a ball anymore.

I suffer from neuropathy of the feet, which I interpret as a loss of sensation. I know my feet are there, and I can feel obvious sensations and movements, but I'm losing touch of the finer senses. I also experience infrequent cramping of the hands and feet. This most frequently occurs when gripping with the toes or fingers. I hope to avoid starving in China when using chopsticks!

When sleeping, I exhibit myoclonus - jerking, involuntary movements of the arms and legs. I also occasionally have night terrors - acting out dreams. Rest assured, though, that I experience no pain (unless I fall!) and do not use any regular painkillers.

To help minimize the effect of these symptoms, I make an effort to exercise during the week. Typically I go twice a week to the local YMCA for a session on the exercise bike and for strength related exercises. I also do Pilates, a form of exercise that emphasizes core upper body (trunk) stability, with my wife once a week. On other days I'll spend time on our home exercise bike. I try to stick to "balance neutral" exercises. The exercise bike I use at home and at the YMCA is a "recumbent" one where the rider adopts more of a leaning position rather than sitting upright. In the past I had tried aqua therapy, but I eventually stopped because:

• It was too hard to get to the facility (though I may try again at another nearby facility)
• The logistics of getting between the pool and the locker area seemed to be more and more hazardous as my mobility degraded
• I was losing weight, which I attributed to too much energy expended on maintaining bodily warmth despite the fact that the pool was indoors and heated

The goals of this exercise regimen is to avoid muscle atrophy and injury by disuse.