I’m happy to report continued good news on the health front.
Over the past year, I have had no disease progression at all. It’s now been three years since I recorded any significant decline in leg strength. In fact, I’ve had some noticeable improvement in leg strength over the past year, especially in terms of walking speed. My stamina has also improved. Last week, I went on an annual golf trip with a group of friends and was able to play 6 rounds of golf in 5 days, more than I’d tried in the previous two years. My respiratory scores are also up significantly from a year ago. I still have to rely on an ankle-foot brace (AFO) due to foot drop, and if going for long walks I use a walker for safety purposes, but that’s where I was in the summer of 2019.
This is about as good as it can get for an ALS diagnosis, and I’m very happy about it. I have no explanation for the stable condition and modest improvements – I’m not trying any experimental therapies or supplements. I’m just trying to stay in shape, eat well, get enough sleep, and keep stress levels manageable.
Though the slow progression and partial recovery of leg strength and stamina is very welcome news, I know the disease trajectory can change at any time, and so Karin and I are now actively preparing to build a new, handicap accessible home designed to accommodate a spectrum of different disability needs over time. That has been a major project this spring. We hope to break ground this summer, and move in by late 2023. The new home will be built on property we own next door to our current house (which we are selling), so we’re not moving out of the town of Davidson.
I’m increasingly hopeful that I will be able to work to retirement now — that will be five and a half years from now. And I’m even allowing myself the luxury of imagining things I want to do in retirement. Now that I can envision the possibility of living a good deal longer than I thought just a few years back, I am also taking up some longer-term writing and research projects, including at least one paper related to ALS advocacy. There is still much to do, and much to live for!