KCAE
Active member
- Joined
- Oct 3, 2013
- Messages
- 48
- Reason
- PALS
- Diagnosis
- 04/2013
- Country
- US
- State
- MD
- City
- LP City
My first post, a combination of who I am and my thoughts on exercise and ALS.
I had my first bad EMG last January, 10 days after a marathon. I was formally diagnosed in April and continued to run about 45 miles a week through June. Late June I ran what could be my last marathon, my balance started to be a problem. In August I received a second opinion, same as the first. The second neurologist told me that "Marathon runners get ALS, not cyclists or swimmers." In the past 30 years of running marathons I only know of one who ran a significant number and got ALS. Two weeks ago I received a third opinion, same as the first two. This neurologist also runs and when I told him that I cannot run any longer and now ride the stationary bike an hour a day six days a week he said “We runners push ourselves hard, do not overdo it.”
My FVC was 80% in April and stayed at that through the end of August. During this time I continued to run slower and slower, staying upright was the challenge vice running fast. I have no balance issues riding the stationary bike and push much harder than when I ran. Last Friday my FVC was 87% after five hard weeks of training. In my mind, the science behind my FVC improvement is as anecdotal as the science behind exercise causing or accelerating the progression of ALS. The data is not there. All I know is that for an hour a day I do not have ALS. I am exercising at a level that I have done for over 30 years, and will continue for as long as I can.
I had my first bad EMG last January, 10 days after a marathon. I was formally diagnosed in April and continued to run about 45 miles a week through June. Late June I ran what could be my last marathon, my balance started to be a problem. In August I received a second opinion, same as the first. The second neurologist told me that "Marathon runners get ALS, not cyclists or swimmers." In the past 30 years of running marathons I only know of one who ran a significant number and got ALS. Two weeks ago I received a third opinion, same as the first two. This neurologist also runs and when I told him that I cannot run any longer and now ride the stationary bike an hour a day six days a week he said “We runners push ourselves hard, do not overdo it.”
My FVC was 80% in April and stayed at that through the end of August. During this time I continued to run slower and slower, staying upright was the challenge vice running fast. I have no balance issues riding the stationary bike and push much harder than when I ran. Last Friday my FVC was 87% after five hard weeks of training. In my mind, the science behind my FVC improvement is as anecdotal as the science behind exercise causing or accelerating the progression of ALS. The data is not there. All I know is that for an hour a day I do not have ALS. I am exercising at a level that I have done for over 30 years, and will continue for as long as I can.