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Living with KD

Personal Stories

Ed Meyertholen, Born 1954 - TX, USA

Ed Meyertholen, Born 1954 - TX, USA

In the summer of 1999, I received a call from my sister informing me that my cousin (my mother’s sister’s son) had been diagnosed with something called Kennedy’s Disease. She told me that KD was an inherited neuromuscular disease and that it only occurred in males. The presence of KD in my cousin meant that I had a 25% chance of having KD too. Even though I am a biology professor, I had never heard of KD. I went to the Web and found Terry and Susanne Waite’s first Web site as well as Patrick Griffin’s Web site. From these and other sites, I found out about KD.

I was 45 in the summer of 1999. I had been married for 23 years and had two daughters (and still have them all!). My life was fairly normal. In retrospect, I realize that I had had minor KD symptoms since I was about 25. These included cramps (especially in the face), spontaneous twitches and limb tremors. The tremors were so noticeable that my wife was sure that I had Parkinson’s disease! None the these signs affected my life and I just assumed that they were the normal effects of aging. I would bring up some of these signs to doctors during visits over the years and none thought that they were significant. As I read the Web pages dealing with KD, it became evident to me that I had KD. I immediately went to my doctor and asked for the genetic test – within a month, I found out that I did indeed have KD (with 46 repeats).

Once I came to grips with the results of the test, I realized that I was somewhat unique in that I knew I had KD before the onset of any major muscle weakness. I tried to volunteer myself as an ‘experimental’ subject so the progression of the disease could be monitored. This was more difficult than I thought, but I eventually was able to find a neurologist in Chicago who was interested – I now see him annually.

After my diagnosis, I was not sure what to do. I decided that I would not let KD run my life. My sister, an avid runner, talked me into expanding my running. Prior to 1999, I was running about 20 miles a week and had rarely ran over 3 miles at a time. Since my diagnosis, I have taken my running more seriously. I now run up to 45 miles a week and have completed two marathons and numerous other races (ranging from 3-18 miles) in the past two years. While I was originally concerned about the effects of running on my muscles, I have surprisingly found that as my training increased, my times got better – just like they should! I lost close to 40 pounds and I run faster than I ever have. For example, I completed the New York Marathon in November, 2001 and ran it almost one hour faster than my previous marathon, finishing in the top 1/3 of all finishers averaging 9 minutes/mile.

I have received numerous warnings from people that my running is not good for me and may cause my muscles to atrophy at a faster rate. I can only state that my muscles have responded to my exercise regimen. As I have previously stated, my times have steadily improved over the past two years. In addition, I have yearly checkups from both my neurologist and my family doctor – both are impressed with my condition. I also feel that it is important to demonstrate that individuals in the early stages of KD can lead active, normal lives, although one might argue that running a marathon is not normal. I realize that at sometime in the future, I will no longer be able to run or even possibly walk as I do now and that most likely, I will need the use of a wheelchair. I do not know when this will occur, but I will accept it when it comes. Until then, I will not let KD dictate what I do.

As I read the other stories of people with KD published on the KDA Web site, I realize how lucky I am as I feel almost no effects of my KD. I sometimes feel that my condition is a gift and as such, I have tried to use my running as a means of raising funds for the KDA. With the help of Terry and Susanne, I had hoped to get a corporate sponsor for my running in the New York City Marathon as a means to raise money. The events of 09/11, however, put an end to that. Instead, we were able to raise some money by having individuals pledge donations. I will be running in the Austin Motorola Marathon in February, 2002 and hope to raise more money as well (please feel free to try to get sponsors!). My goal, which may be unattainable, is to qualify to enter the Boston Marathon so that we can use the notoriety of that race to both raise funds for the KDA and increase the awareness of KD.

(Ed is shown in the photograph above completing the New York Marathon in November 2001.  We have put his name over his t-shirt .  He is the 4th person back on the left hand side.)