Tuesday, December 8, 2009

A Hint of Things to Come

When I look back on the days when I did not know I had Kennedy's Disease, several instances come to mind as warning signs. Perhaps when they happened something flashed in my mind, but it was easy to forget about the occurrence and just get on with life. No particular instance stood out by itself, but when you looked at the trend over four or five years it should have been a warning to me.

The first signs were when I was in the late twenties and playing racquetball almost daily along with lifting weights and running. I remember my racquetball coach commenting about my muscles twitching (the arms and legs) after a good workout. To me, it almost felt like I was having a sugar high because of the tingling sensations throughout the body. My coach thought that it was an issue with me not eating enough carbs before working out. I was not so sure, because I had never experienced these sensations or twitching before.

It was also right about then that I would wake up in the middle of the night with painful leg cramps. I would massage the cramp until the pain went away, but often it would be sore for days. During that time, I was having cramping three or four nights a week.

A couple of years later when I was thirty years old, we moved to Florida. Every day I was in town (not traveling on business), my wife and I would have lunch at one of the lakes and then take a walk around the lake before going back to work. One day, while walking hand in hand around the lake, my legs just gave out and I went down. I felt like a clumsy fool and hoped no one saw me. I was fine afterwards except for a little bruised pride.

Around the same time while playing a game of tennis, I went back to cover a lob. While backpedaling, I lost my balance and went down hard. Again, I could not figure out what happened. I was embarrassed, but also a little upset because I lost the game (I was very competitive).

A year or so later, we moved to Pennsylvania. We lived in the country surrounded by apple orchards. My wife was a power-walker at the time, and she loved to push herself while walking through the hills and valleys. I enjoyed walking with her, but found that I could not keep up with her. As time passed, I found myself turning around earlier and earlier in our walks. Eventually, I just told her to go by herself because I was holding her back (that was particularly difficult for me to admit).

About the same time, my maintenance manager asked me to stop by the shop to look at some trailer damage. For years, I had just jumped up into the back end of a trailer without even a thought. This particular day I remember walking over to the trailer, putting my hands on the back end, and trying to hop up. I could not get up. After three or four attempts, the maintenance manager wheeled over some portable steps. Boy was I embarrassed. This was about the time that I began telling people that I had bad knees.

Who would have ever thought at the time that these were the beginnings of living with Kennedy's Disease? And, even more interesting, who would have thought that thirty years later I would be sitting at my desk writing about these trivial moments in time?


  1. My first symptom were hand tremors when Iw as 27. Many tests were made, including Parkinsons but ,in the end I was prescribed medication that certainly stopped the tremors but also slowed my running speed by about 50%! The enjoyed long distance running so I stopped the medication and learn't to live with the tremors. Ever since the tremors have come and gone , not getting any worse. Unfortunately other symptoms have developed since I was about 47 and the tremors are a minor issue now.

  2. Ah yes, those hints of things to come. For me it was incessant hand tremors around 30 years old. I kept wondering the cause.

    Then at 32, after working late one night and walking home alone, I suddenly felt an acute pain on the left side of my chest. I thought I was having a heart problem; in retrospect I know it was a muscle spasm along my ribs, which I now experience daily.

    Over the years the spasms spread to most muscles of the body, including around my skull. Only at the age of 37 did I learn the reason for these ghosts from the future.

  3. I played a lot of softbsll and basketball. While I was never very fast, had a strong throwing arm or able to jump very high, I held my own and loved my weekend sports. Within a couple of weeks of each other, one time for softball, the other for basketball, I was running forward, but my legs gsve out below. My mind was saying go, but the legs didn't really respond. I was more embarrassed than anything else and thought I was just getting older (age 32) and being a weekend warrior, this was bound to happen. Things got worse, but I didn't see a doctor. It wasn't until one middle of the night episode, where I woke to an attack of vertigo which landed me in the emergency room, that the I confided to the doctor that I experienced the weakness in my body. He thought it might be MS and recommended I see a neurologist. From there it was a 2 year journey in trying to determine my affliction.


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