Friday, July 26, 2013

Use it or lose it

What it means: If you don't continue to practice or use the ability, you might lose the ability. For example, if a person doesn't exercise his or her physical body, he or she will likely lose strength, endurance, and stamina.


For those of us living with Kennedy’s Disease, even if we use it, we will lose it. However, it might take a little longer to lose it. This is as much about muscle memory as it is motor neuron stimulation. The key for me is that as long as I perform the right exercises, my muscle groups will continue to function better and longer.

It has been four years that I have been exercising every day. In the four years, I have only missed one day. If I didn’t see the benefit, I wouldn’t do it. Or, saying it another way, as long as I see the benefit, I will do it.

Muscle memory helps perform the same functions repetitively. For example, I perform 60-80 steps in place every morning. This particular function improves the muscles in the quads, calves, ankles and feet. It also is a good cardio exercise. When I combine it with side-to-side steps, leg lifts, and calf stretches, I have a good standing program that has my heart pumping..

What do you do to keep the muscles and motor neurons stimulated? Have you noticed any benefit?


  1. Bruce, what kind of exercise is appropriate for KD people.. Can I do little weight lifting to increase some muscle mass before they become atrophic? I downloaded the exercise program from the KDA website but is only shows arms just movements not mild weight lifting to try maintain muscle mass. Can weight lifting increase the neurons damage to muscles? Thanks

  2. John, the key is to stimulate the motor neurons, but not to over-do. When you over-do, it can cause damage.

    Depending upon your age, progression of KD, and your general health, light weights should not be a problem. I would ask your doctor to recommend a physical therapist that is familiar with a progressive disorder. The PT can recommend appropriate exercises that will 'do no harm'.

    If you noticed in the exercise guide, you can add weights depending upon your current capabilities.

    I would also recommend that your doctor draw a little blood to have your CPK checked. Then, after about three months, have it checked again. If the CPK count has increased substantially, it would indicate that you are doing damage.

    The key is "Smart Exercises." I hope this helps.


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