Not Everything is Predictable

Those of us living with Kennedy's Disease often like to compare symptoms, CAG Repeats, age of onset, and progression. I believe we do this to feel either better or perhaps worse about ourselves. Unfortunately, not everything is predictable about this gene defect. Allow me to give some examples.

Age of Onset: This could be anywhere from the teens to the 60s. Most often symptoms begin to appear in the 30s and 40s.

CAG Repeats: The number of repeats can be anywhere from the low 40s to the 60s. 34-39 is considered "borderline" and the person might only experience mild symptoms. Researchers now believe the higher the Repeats, the earlier the onset.

Progression and Severity: The earlier the onset, the greater the progression (more severe the condition). This is just a time factor. If onset begins in the 50s for one person and the 30s for another, the 30s person will have experienced 20 years of progression before the 50s person even experiences symptoms.

Symptoms: You would tend to believe that symptoms would be something you could count on, but that is not true either. There is a long list of potential symptoms, but not everyone has the same symptoms, nor do the symptoms appear at the same time in the progression of the disease. Go figure!

What else do we know about the disease?

Pneumonia: This is something that is not kind to us. Almost every doctor encourages us to have the pneumonia vaccination and the booster at age 65. They also recommend the Pneumococcal vaccine today. The flu is something we should also be concerned about because many times it can result in pneumonia. Once again, doctors encourage that you have an annual flu shot.

Exercise: Neurologists have not determined the true value of exercise for those of us with the defect. There is a consensus, however, that exercise if important to our wellbeing. The reason could be as simple as the benefits of endorphins and adrenaline to our general mental, emotional and physical health. Several doctors believe that it is important to continue to stimulate the motor neurons and muscles to keep them healthy as long as possible. And, “muscle memory” is very effective in helping to keep you mobile and upright. Everyone does agree that over-exercising does more harm than good. I can attest to that.

There is also the feeling that exercise and stretching helps "cell inhibition." Cell inhibition is what happens when an activity, such as an exercise, temporarily blocks an unpleasant sensation like a chronic pain. The nerve transmits the pain signal to a cell in the spinal cord that is inhibited by the new "traffic" caused by the stimulus (exercise routine). It is why pinching the cheek blocks the pain from the anesthesia needle in dentistry. Exercise and stretching (working the muscles and joints) produces stimuli for the spinal cord and brain (central nervous system), which is one reason we feel better when we move.

Sedentary Concerns: As the disease progresses, most of us with the defect become less active. We tend to spend more time sitting and do not work our metabolic system. For many of us, "couch potato" is a good phrase that exemplifies our lifestyle as the disease progresses. Weight gain and potential health complications because of the weight, as well as the additional strain on our existing weaker muscles, are always a concern.

Not Everything is KD Related: Just because we have Kennedy's Disease does not mean we are immune to other ailments and health issues. Diabetes, heart and lung disease, kidney failure, as well as many other health concerns are always a possibility as the body ages and based upon hereditary issues.

Continue seeing your regular doctor: Regular physicals and doctor's visits are important for your general health and wellbeing. One man, for example, complained for months about chest pains. He blamed them on Kennedy's Disease and felt he could not do anything about them. The pain finally became severe enough that he saw his doctor. Doctors diagnosed him with having blockage in his arteries.


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