Exercise and ALS

[KCAE]

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.

 

[Bad Balance]

It is hard to slowly watch it go.

Watch your recovery time...that will tell you when you are doing too much.
Balance things out to extend things as long as possible.
Rigidly protect your sleep. It is essential.

Plan ahead, no one will get it just the way you want it.

Hang in there my brother

 

[ottawa09072013]

Interesting fact about ALS and marathon runners. I was a marathon runner... 13 marathons under my belt... including Boston.

 

[ottawa girl]

Me too... A marathoner - But not 13 :shock: - 0nly 3. And surely never qualified for Boston.

I was an "aim to finish" kinda gal. Not exactly built like a runner either!


That said, welcome to our club. It's very exclusive. Only nice people get ALS - or so we've heard.

Glad your FVC improved, but sometimes it's just happenstance. I'm NOT at all telling you exercise isn't helping you, I'm just saying my numbers changed up & down a few times since diagnosis without exercise. Sometimes I was too tired to give the test my best shot or my seasonal allergies bothered my breathing.

You'll find lots of reliable information here. And support and chuckles. And friendship.

 

[pearshoot]

isn't it amazing? the trial to test strength exercise, endurance exercise and ROM with ALS has been open for over a year and they still don't have 60 participants. with so many questions about this and few answers I am still doing physical exercise

 

[SMP51]

well my Steve was a scuba diver and a cyclist(14 miles 5 days a week) but wouldn't run a block! lol.
so not sure about the runners get ALS take on it but it does seem some highly active and healthy people tend to be in this little club of ours.

run as long as you can but when the time comes that you have exhaustion don't push yourself. ALS leaves you with X amount of units of energy a day and when you have used them you are doe for the day, use them wisely. there will come time you shouldn't push yourself

 

[AfraidButNotAlone]

KEEP Strong!

 

[zoohouse]

Tim was a truck driver, and would unload 3600-4200lbs of produce using a hand dolly in 2 days, 4-5 days a week. When he had to quit work, they tried several other drivers, mostly 10-20yrs younger, but none could finish it. To think he was showing signs of ALS in Mar/12, and only stopped after being mugged and knocked unconscious in May. He has always been extremely athletic, and also very nice. Hmmmm?

 

[affected]

my PALS was no athlete and never did 'exercise' but was incredibly healthy. Before ALS he had never had a blood test and next Friday is the first time he will have ever been in hospital.

He lived a very active life and had almost no body fat (which means now he is a skeleton with muscle wastage), and was an incredibly outgoing, friendly, kind person.

Bulbar onset for him has been devastating as his life revolved around people and talking.

Interesting isn't it how so many PALS were previously so healthy. There must be some that have other health issues, but it seems from the little I have gathered that mostly it is active, outgoing, healthy people that it strikes at. Is that what others perceive?