Sunday, July 9, 2017

From Peripheral Nerve Disorder to State and National Cycling Champ

I am not going to go into any detail about my disorder (Cramp Fasciculation Syndrome - CFS) or its symptoms because I have written lots of articles on that subject in this blog. And I am not going to go into any detail about the havoc this disorder wreaks on the lives of people who have peripheral nerve disorders (PND) and how difficult it is to exercise, especially intensely (I have documented this in great detail). I will say without CFS I would have never found cycling. I had to evolve and find new sport activities since my disorder made it virtually impossible to do other activities without it being a safety concern or without a great deal of pain. Do not get me wrong, it hurts to cycle, but the pain levels are tolerable even when training at a high level.

My message in this blog is to tell folks with PND to keep fighting and evolving. Life it too short to miss out. This year I won the Colorado Masters Time Trial Championship (Age: 50+, Category: 4 & 5) and the National Senior Games 5K and 10K Time Trial Championships (50-54 Open Division). I finished 13th at the USA Nationals Masters Time Trial Championships (50-54 Open Division) – This is the most competitive national race. I was a mere few seconds from earning a top 10 finish and my time would have been good enough to place 5th in the 55-59 group which is less than two years away for me.

I am not too sure what is next for me. I miss riding a bike just for fun. Do not get me wrong, it is fun to go fast, but that fun is not realized until the race is over and you catch your breath. Training is fun, but it is really painful. I’ll continue to take it one day at a time and try to remain humble with my successes and learn from my failures.

My wife asks me why I put myself through so much pain and travel aggravation to compete. I told her a few short years ago I was being tested for ALS and MS and I thought I was dying. After being diagnosed with CFS it was blessing but my life was changing for the worse. When I found cycling it made me appreciate that much more that I have an activity I can do. I figured it was just a matter of time before the slow progression of my disorder took cycling away from me as well. So I wanted to make the most of what I had because it could go away at any time. I wake up every day and realize how lucky I am because there are lots of people suffering in this world much worse than I am. What I am going through was a wakeup call for me and I am doing my best to answer that call and make the most of it.

I have been told my entire life that I would not amount to much. My mother, when she was mad at me, would tell me how stupid I was since I had issues with reading and writing. I worked hard to prove her wrong. I got rejected at most schools because they said my test scores and grades were not good enough to be an engineer. I worked hard to prove them wrong. At work I was told product and test engineers were inconsequential and did not make a difference like design and system engineers. I became one of few product and test engineers to be named a Distinguished Member of the Technical Staff. Multiple neurologists told me my life would change for the worse and I would not be able to remain active. I have worked hard to prove them wrong. I really do not like it when people tell me I cannot do something and it motivates me to prove them wrong. My wish is everyone with peripheral nerve disorders also prove their neurologists wrong! Do not settle with what they prognosticate for you! I believe most people can overcome a great deal of adversity if they put their minds to it.

Pain is relative and it is impossible for anyone to know what is going on inside another human being. Maybe my pain is not as bad as others, but I know my hands and feet hurt a great deal. My muscles are sore to touch. I know I definitely have pain, but it is impossible to relate my PND experiences with others because we are so unique. Peripheral Nerve Disorders attack each of us differently and remedies that work for one person to relieve pain will not work for another. I receive several emails per week from people suffering and I do not have many answers for them, but if you want someone to talk with feel free to write me. I do my best to try to motivate others. When I wake up I say to myself there is no way I can train today. I never feel like training, but once I get going I feel better for doing it. I encourage those with exercise intolerance to force themselves to walk, they will feel better for doing it. Besides, the pain from training or exercise will mask the pain from CFS which is a much more desirable outcome.

2 comments:

  1. Going through the same journey with, what I hope is, BFS. Your example is inspiring Patrick

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  2. Thank You. I am sure it BFS (A much better probability than other things). A strong mental attitude will go a long way on your journey.

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