Health update, late October 2019

I’ve gotten a number of inquiries from friends asking how I’m doing, so I thought I should share a quick update.

I just had a quarterly consultation with my ALS clinic this week, and it’s again mostly good news. My vitals, my breathing, and my core and upper body strength are all great. My right leg is maintaining its strength. The setback I had starting in summer — a much weakened left foot — remains a problem, but does not appear to have gotten worse since the summer. So, I’m a bit slower and more wobbly on my feet than 6 months ago, but otherwise stable.

I’m still doing most of what I want to do. I can still walk 1-2 miles at a time, and recently played a couple of rounds of golf at the beach without trouble (in fact, Tom Kazee and I tied for first in that member-guest golf tournament, earning each of us gift cards for redemption at the Caledonia golf pro shop, so I got some nice Caledonia golf swag! Thank God for high handicaps). I also traveled all the way to Kenya for a workshop and managed the airports fine. I went to a Clemson game with brother Pete, and visited my sister Susan for her birthday in CT and did one mile of the local Walk to Defeat ALS with her, our parents, and some of Susan’s friends. My family and I are planning a big “bucket list” trip this winter to tour the Grand Canyon and southern Utah, which I’ve always wanted to see.

Realistically, this is about the slowest disease progression I could hope for. With each passing month I have more hope that I will be a true “slow progression” case. Time will tell.

I am now using a cane, just as a precaution against falling, and have been fitted for foot braces (AFOs) and will start to use those to reduce the risk of tripping because of foot drop. So far, no falls, but I definitely notice that I’m working harder to maintain my balance, a bit like one feels on a ship at sea.

Getting to work each morning got a lot easier thanks to my brother Pete and sister in law Stephanie, who loaned me their golf cart, which is fitted out with everything to drive legally on streets with speed limits 25MPH or less. That allows me to park right up against my classroom building at Davidson College and has been a godsend.

Karin and I are doing some early planning to get ahead of the curve for when the time comes that we need to make bigger adjustments to my declining mobility.

Meanwhile, I continue to teach full-time at the college. I’m staying very engaged in ALS advocacy work with the ALS Association and am starting to feel a bit better informed and better-positioned to start to weigh in on a variety of ALS policy matters. Karin and I traveled to an ALS training workshop in Florida in October and I have committed to serving as an “ALS research ambassador” for the group (Northeast ALS Consortium) that generously provided the training. I’ll be posting a series of essays on the challenges of ALS advocacy on this blog soon. Stay tuned!

And, as always, thanks for asking how I’m doing.