The Never-Ending Learning Process

Feeling overwhelmed is something most of us with Kennedy's Disease have experienced. I have often said that the mental and emotional aspects of the disease are as difficult to handle as the physical ones. Frustration over not being able to perform a simple task is something that I still have not learned to live with. There is another aspect of living with the disease, however, and that is "the never-ending learning process."

What many of us have experienced through the years is that there are certain times that we can see a drastic reduction in strength for several weeks. I call it "the slide." Then, we hit a plateau where our strength just seems to level out for a period of time ... occasionally you might even feel slightly stronger. I always look forward to the plateaus because it allows me to stabilize my life around my new capabilities (if that makes sense).

Looking back upon some of my experiences, I, at one time, exercised to excess. I thought that if I felt weaker, than all I need to do was exercise more often and push myself harder. By doing this, I just knew I would somehow regain my strength. It did not work. I found that pushing myself beyond my capabilities caused more harm than good. The muscles need to rest after exercise.

As I matured (my acceptance and knowledge of the disease), my exercise program changed. The one I use today was developed by a physical therapist that is familiar with these type diseases. My program today is called "smart exercising." I still exercise every day (15-to-60 minutes depending upon the routine), but I alternate exercises to keep fresh and not over-tax any one muscle group. I have found the key to "smart exercising" is consistency and to listen to my body. I focus on muscle groups today and not individual muscles. Lightweight repetitions and stretching exercises are far better for me than weight building. I do not exercise until I am fatigued or hurting. If that happens, I have gone too far. And yes, most neurologists familiar with KD agree that exercise is good for you. It stimulates the motor neurons and keeps them firing. Healthy muscles remain strong and healthier longer.

While chewing and swallowing is second nature to most people, it is something else that requires my total focus. As my bulbar muscles continue to weaker, it becomes more difficult to chew and swallow without choking. Choking almost always occurs when I am multi-tasking while eating.

I have also learned to live on the heels of my feet. The toes, for most people, provide balance when standing or walking. Since my toes can no longer hold my weight, I live a life trying to maintain my balance with most of my weight on my heels. Standing with my weight on my heels is often dangerous because it is easier to lose your balance. I have to focus on keeping the knees locked, weight on heels, weight on both legs, while being aware of my surroundings. When focused, I can feel almost every muscle in my legs and feet working (the motor neurons are firing). Another rule is that I cannot twist or turn while trying to walk. Today, one of the most frightening half-seconds in my life is when a knee buckles and I wonder if I am going straight down (the most dangerous fall), or fall forwards or backwards.

Perhaps you noticed that the word "focus' was used several time in this article. Focusing does not come naturally in a multi-tasking world. For someone with Kennedy's Disease, the adage about "not being able to walk and chew gum at the same time" takes on a completely new meaning. I would venture a guess that most falls occur when the mind is not focused on standing or walking.

You learn to live with these concerns and issues when you have Kennedy's Disease. You also find yourself constantly re-evaluating your capabilities as your strength wanes. While still being aware of these things, you try not to give them too much importance. You want life to be as normal as possible. I hope you understand that I am not complaining. I am just trying to remain focused.