Copyright 1996
(updated January 1997, August 1998, August 1999 and August 2004)
This story was written in 1980 when I was 42 years old, but never published. It has been expanded with an Epilogue at the end to update my experiences over the 24 years that have passed since this was written.
Four years ago I was diagnosed as having Myasthenia Gravis. I had been experiencing intermittant hand, arm, and leg weakness, sporadic breathing difficulties, chewing and speaking problems. The symptoms eventually were noticed by a doctor at work who referred me to a neurologist with a notation that I might have myasthenia gravis. The neurologist tried his best but wound up referring me to the Johns Hopkins Hospital where I was quickly diagnosed. After several years of these slowly progressing symptoms I was somewhat relieved when I was diagnosed. My doctor at Johns Hopkins told me that with medication, I would probably live a fairly normal life with few limitations. After only a few short weeks I was feeling better about my chances and my medication (Mestinon) was in fact relieving all but the most persistant weakness in my arms. I hve continued on the same medication to this day, but at much lower levels.
In the previous few years I had twice attempted to participate in an noon-time exericise program at my place of employment. This exercise program is connected with the employee Health Unit and has a yearly physical and stress test as a prerequisite to participation. My two attempts to participate were short lived and they both ended with my frustration at feeling that exercise was making me feel worse rather than better as expected. Only after my diagnosis did my doctor confirm that my experiences were logical given my slowly progressing Myasthenia Gravis.
My neurologist approved my participation in a supervised exercise program and I began my third attempt at the program within one month of my diagnosis. I have been successful in the following four years in continuing exercise. Not only has it improved my physical conditin dramatically, it has given me a mental outlook that has aided every phase of my work and home life. What follows is a step by step outline of my progress the past four years.
I started my fitness program with an introductory discussion with the Fitness Director. She explained the importance of aerobic exercise during which the heart rate is elevated for an extended period of time (e.g., 30 minutes). This exercise of the cardiovascular system is thoought to be a major factor in longevityy and in maintaining physical well being. I was led through the first day's exercise which was devoted to minimal levels of several types of exercise with the goal of establishing reasonable starting points for each exercise. The exercises alternated aerobic type routines with muscle strenthening exercises. I started with stretching exercises and proceeded to a stationary bicycle for five minutes at low tension setting. This seem easy enough and I proceeded to the situp board where I destroyed my new confidence by managing to do only one situp. The next aerobic exercise was the rowing machine which after a few learning pains was used for about 2 minutes at what seemed like a fast rate of 20 strokes per minute. That accomplished without too much "sweat" led into some weight lifting using three pound weights. Weights were never one of my favorite exercises and I soon realized that my MG was still a factor imiting my abilities. I finished my first day with five mintues on a motorized treadmill. I should note that before starting exercise I took my heart rate and took it again after each aerobic exercise. Each time it was noted on my exercise card so that my daily results could be analyzed by the Fitnss Director.
I optimistically started into Day 2 and noted that the Fitness Director had readjusted some of the times and settings for the bicycle, rowing machine and treadmill. I finished all exercises and realized that I indeed had improved slightly but measurably over my first day.
It began to dawn on me that if I could continue the slow improvement that I was already beginning to notice that in a few months I could probably return to normal strength and activity. The Fitness Director was very supportive and complimented even my meager efforts.
I began to be less self conscious during my exercise. I realized that those others around me, while mostly in much better condition, were not "Charles Atlas" muscle bound types but normal people whose main goal was to improve their cardiovascular systems at the same time they were enjoying the exercise and each others company. The support of these people was to become very important to me as I realized that exercise can be very dull and boring without others to spice it up.
The exercises were progressing remarkably well. I usually managed to get in a least three days a week of my exercise program. My MG continued to hinder my weight lifting but none of my other exercises. I was getting bored with riding the stationary bicycle which was my primary aerobic exercise. I watched many of the other people come in and out of the exercise room on their way too and from jogging on the nearby country roads. They looked very tired when they came in but they didn't seem bored with their daily routine.
The inevitable (for me anyway) happened as I decided to try jogging in the warm summer air. I jumped down off the bicycle and timidly walked outside where I waited until no one was watching and started out on my first day of running. I started slow, stopped to walk frequently, and finished slow. I went about one-half mile and felt pleasantly tired at the finish. I felt encouraged that my MG did not seem to interfere in any way I could perceive.
The Fitness Director seemed a little surprised that I had started running but did not indicate any displeasure. I took that as a sign that I could continue, which I did. I still did my stretching exercises, situps, bicycle warm-up, and weight lifting but my time on these dimished to match my increased time running up and down the roads.
I slowly increased my running over the next three years. It gradually eliminated most of my other aerobic exercise. I kept my stretching, situps and weight lifting as part of my total program. Short races became periodic morale boosters that made it obvious to me that I was continuing to make progress. I even started and completed two marathons, although not without wearing down my desire to run a bit. The Fitness Director continued to be a strong influence and was very supportive. It became possible for me to not only receive encouragement from others but help others start and maintain their individual programs for fitness. This aspect of mutual support is one of the most important factors in being able to maintan interest. Otherwise, the exercises which are basically boring, can easily be dropped for many convient excuses such as bad weather, a slight cold, too much work, too little work or a sore toe.
Exercise has been extremely gratifying to me both physically and emotionally. No
increase or change in my medication has taken place, even during my extremes of physical
exertion. My present exercise program is obviously not one that will appeal to a great
many myasthenics. However, I think that most patients can probably discover (with the help
of doctor and fitness expert) a form of exercise that is aerobic and helps to maintain
good muscle tone. Even a daily walk could be used to great advantage by patients not well
enought to use aerobic exercises. I have also found that daily exercise has a major effect
in reducing stress levels at work and at home. Since stress is definately an aggravating
factor in MG I feel that this stress reduction is probably very significant. It is also
clear that while some people may be able to exercise on their own, most people need the
support of others and as such, a good exercise facility is very helpful. The supervision
of a qualified fitness expert at such a facility should be considered highly desirable if
not neccessary for the Myasthenia Gravis patient.
Following a few more years of my formal exercise program, I began to shift to my own personal exercise routine at home. This was partly due to the increased demands at work and partly due to the need for a change to make my routine more interesting. I wish I could say that this change was for the good but that is not clear. I am now convinced that a formal exercise program was what was best for me - I have struggled with my own lack of motivation when exercising on my own. But, even with a lessened degree of exercise, I still feel wonderful afterwards. My exercise now consists mainly of riding a regular bicycle for an hour or two in the park. Not exactly the level of exercise I would prefer but still enough to maintain an acceptable degree of fitness. My main problem is fatigue for about two days after my most stressful bike rides. Hot days affect me the most that way but curiously it doesn't affect me at all during the actual ride. The heat together with the exercise seems to lubricate my muscles. The feeling begins about 30 minutes into my ride and lasts until a couple of hours after I complete my ride. It takes a little longer to recover now than during the years of my formal fitness program, but I am convinced more than ever that extended aerobic exercise helps my MG.
While I have no formally abandoned my running/jogging program due to worries about wear and tear on my knees, I have agressively persued participation in programs for seniors. These include senior (over 60) softball and senior volleyball. During the spring, summer and fall I particpate in both sports in addition to long weekend bike rides if the weather cooperates. During the winter I maintain my activity level with volleyball at least 3 times per week and occassionally more. I feel lucky that such senior opportunities are available to me. I also have created a website for our Senior Volleyball which I will list here for those in the Maryland area. It is: http://pages.prodigy.net/stanley.way/volleyball/
*Gincy (my original Fitness Director) was a major influence in my early years after diagnosis with MG. She took the time to understand my disease and how it affected me. She also made a presentation on exercise to our Washington, DC MGF Chapter.
**-continued (August 1999) My formal exercise program has continued with my on-again, off-again approach but my weekend bike rides have continued, weather permitting. I have noticed a fatigue for a couple of days following especially long bike rides in hot weather but no other problems. Overall, I have very happy with the positive benefits of each exercise session, whether as part of the formal program or out on my own.
I wonder if exercise could be part of standard MG treatment for some patients. Could it be that increased blood circulation removes concentrations of AChR antibodies from the most affected muscles and spreads them around, thereby temporarily making those muscles better? Or, could it be that the level of acetylcholinesterase (to destroy acetylcholine) present during exercise is less compared to the release of acetylcholine (nerve transmitter) during aerobic exercise.
I have discussed physical exercise with my neurologist several times since my diagnosis. He has always been supportive, never indicating a need for me to limit my exercise. When I pressed him to explain the dangers of exercise for me he did suggest that straining a muscle because of a muscle imbalance was his principle concern. That reminded me of the old standby statement, I have heard repeatedly over the years, which is the recommendation to "not overdo" exercise. I have heard that exact same statement made to people with absolutely no disease as well as myasthenics. I suspect that statement protects the physician from having to deal with exercise and the patient on a more individual basis. When I compare a possible strained muscle and extra fatigue to the improvement of my cardiovascular system I see no question over which to choose. At the same time I have to recognize that I am very fortunate in that my MG is not severe and allows this type of exercise.