For friends and family curious about how I’m doing health-wise, I have some good news to report.
I just went to the Wake Forest ALS clinic last week for my quarterly consultation. I’m checking out fine, no slippage in my overall condition. In fact, I’ve actually seen some improvements since December 2020.
Back in February I got a new custom-fitted AFO for my left leg, which has been awesome. It gives me a lot more support and is comfortable to wear. I feel much more stable walking on uneven surfaces with it. It’s made golf a lot easier. I can walk without the cane or rollator with confidence.
Over the past two months I’ve experienced unusual improvements in leg strength. My standard .8 mile walk used to take me about 25 minutes; now I complete it in 20-21 minutes. My stamina is better, I can take a walk or hit golf balls and not feel tired and need to lay down afterwards. I use a bunch of other metrics to measure how I’m doing — times and speed on a recumbent bike, times and speed on a treadmill, results from arm, leg, and core strength measurement monitoring research project I’m a part of — and in all cases I’m either improving or staying stable. And overall I’m feeling good.
I have no good explanation for the improvements. I’m not doing or eating anything differently, or trying any experimental therapy or herbal supplement. Though unusual, a small number of people with ALS do experience temporary remission in symptoms. That appears to be the most likely explanation for now. The possibility that I have some other “ALS mimic” disease is unlikely, I am told, but can’t yet be ruled out. The diagnosis of most neuro-muscular diseases is done by process of elimination, and in complicated slow-progression cases like mine can take years to reach a definitive conclusion.
Meanwhile, I’m trying to take full advantage of the fact my body is finding ways to stave off and push back the ALS disease progression. I’m planning to continue to teach full-time at Davidson College in coming years, am taking on new roles with the ALS Association (I’m continuing as a Board member, and am Chairing the Care Service Committee), and am trying to get out and enjoy walks and golf while I still have decent mobility and balance. As more and more family and friends get vaccinated for COVID, I’m looking forward to a lot more socializing too! And I am very appreciative of how lucky I am that, for whatever reason, I am enjoying this extension of time with only limited restrictions caused by the ALS.
Ken's Caucus 