Riding with ALS

I was recently diagnosed with amyotrophic lateral sclerosis or ALS, commonly known as Lou Gehrig's disease. Naturally this was quite a shock and has taken a lot of adjustment. I take each day one day at a time and every day that I can still ride my bike is a good day. I don't think that I will every completely recover from a recent right leg hip fracture because of damage to the motor neurons in that leg. My other leg is reasonable OK. My arms are noticeably weaker now but I can still operate the brakes OK. I did two rides last weekend and my speed is definitely much slower. My average was only about 14 mph. I have to be careful to eat enough to keep my energy level up and to not get too tired. I hope to ride this weekend although I will only do the shorter rides. I don't think that I am good for much more than about 40 miles. I would just like to have somebody to ride with.

I am using my Bike Friday because of the lower gearing and step through frame. Helps because problems with the hip fracture on the right leg.

My ALS started in my throat area with difficulty swallowing and later difficulty eating. I have learned how to swallow better but I have to eat slowly. I didn't notice other muscle related symptoms until my diagnosis on September 16. ALS is such a rare disease that most doctors are not very familiar with it (they may only see one case in there entire career). Also my type, with symptoms starting in the throat area, occurs in only about 20% of all ALS cases.

While I started this blog to discuss transportation and bicycling issues I am going to use it now to record my struggle with ALS (at least as long as I can). So thanks for listening.