I’ve neglected this blog! It’s been 6 months since I last posted.  Some quick news: I am happy to report that it has now been 4.5 years with no disease progression. I continue to teach, conduct research, travel (I took two trips to Africa this summer, one to Mogadishu, one to Kenya), and exercise (mainly swimming, weights, walks, and golf). I’ve gotten into better shape, lost weight and feel great. My lower legs are still weak, but I’ve been able to improve strength in other parts of my body. My breathing capacity (measured as forced vital capacity) is now back up to the lower edge of the nor ..read more

The ALS Association Board of Trustees met in Chicago this weekend, and for me it was the final meeting before I rotate off the board, after serving for three and a half years. It’s been an education, and a privilege to serve with so many very smart and dedicated people. These were not easy years. The COVID pandemic was highly disruptive for all service-oriented non-profits; the Association went through a complex process of internal restructuring which will put it in a position to do its work more effectively and efficiently; and the wider ALS advocacy ecosystem has at times been turbulent and ..read more

It’s been six months since I provided an update on my health, and I am pleased to report that my condition continues to be stable – and continues to show incremental improvement in several metrics. In August, I started swimming as a new form of exercise. Initially I could only swim one lap at a time, needed to catch my breath, and could only complete 4-5 laps total before I felt exhausted. But within a month I could swim 4 laps at a time without stopping, and 20 laps total. Now I’m able to swim 10 laps at a time, and can swim a mile (34 laps). Plus I’m getting out of the pool feeling good, not ..read more

trying my hand at wheel chair tennis Last month, I finally did something my sister Susan had suggested over a year ago — I looked up the local wheel chair tennis group and ask if I could join them. The group, Wheel Serve NC, was very welcoming, and borrowed a large sport wheelchair for me to try. I’ve joined them three times now, and though learning to move around quickly in the chair is really hard — and hard work — the feel of hitting a tennis ball again has been awesome. The group of wheel chair players and volunteers have been great. A few of the players are exceptionally good, tournament ..read more

News on my health continues to be surprisingly good. My leg strength continues to show mild but consistent improvements across multiple metrics, for reasons we cannot explain. The physical therapist confirmed this at my most recent ALS clinic visit in July, noticing stronger muscles in parts of my legs from just three months prior.  I’ve been able to stay active – in June I played golf for 4 straight days without much tiredness, and now that the college fitness center has reopened I’m lifting weights and using the bike machine and treadmill. I’m comfortably lifting/cycling/walking at the ..read more

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 confid ..read more

Note: this article quotes three of us from the ALS community — Andrea Lytle Peet, Larry Falivena, and me. NC residents with severe health problems worry about COVID vaccine delays BY HANNAH SMOOT FEBRUARY 22, 2021 12:15 PM,  Charlotte Observer https://www.charlotteobserver.com/news/coronavirus/article249317405.html?fbclid=IwAR25TUIuqccm7JzGdzYV7kcLnkIL2iQSkB4hIjIZFMNqbkSUDmMErqTcuT8 For Maura Wozniak’s family, wearing masks and social distancing is nothing new. The Huntersville woman has cystic fibrosis, and has undergone two double lung transplants. She wears a mask every time she g ..read more

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{Note: this letter was written by me and Andrea Lytle Peet, and co-signed by over 50 people with ALS and their caregivers in NC, to petition for higher priority access to COVID vaccines for people with ALS and others with high-risk medical conditions.} February 5, 2021 Dear Members of the NC COVID-19 Vaccine Advisory Committee, We write to you as a group of NC citizens in a high-risk medical category, to petition you to press the NC DHHS to reconsider its prioritization plan for access to the COVID-19 vaccine. Though we represent only one rare disease — all of us are living with the neurologic ..read more

In December 2020, I was part of a group of people living with ALS who took part in the 31st International Symposium on ALS/MND, the largest annual gathering of researchers working on ALS or ALS-related diseases.  Because of COVID-19, this year’s symposium was virtual. Below, I share a few personal take-aways from the opportunity to listen to three intensive days of research presentations. What role can we usefully play in ALS research design and practice? Ever since I decided to engage on ALS advocacy after my diagnosis, I have struggled with this question: what is the appropriate role fo ..read more