The news on the medical front continues to be good. I have now gone another year with no ALS disease progression. That makes almost six years of stability in my health. This summer I traveled along to Kenya for ten days of work, and then spent the past two months directing the Davidson in Washington program in DC. I’m still teaching full time, staying active in research, swimming and playing golf.
I have not been posting on ALS advocacy issues in part because I’ve been so discouraged by the tone and focus of ALS advocacy work, and because I needed to take a break from it. But I plan to start up again, and will start using this space more actively. More soon!
Hi friends, hope you are all doing well. This is just an update on my health. Yet again I am happy to report that I have experienced no disease progression with the ALS over the past six months. That now makes about 5 years since the last discernible change in leg muscle strength. I’m still swimming, golfing, doing fieldwork in east Africa, teaching full time, and enjoying life. I even got out on the tennis court and (carefully!) hit with my kids Erik and Kaisa last week, just didn’t try to move to balls that were beyond my reach. Our new home is wonderful to live in.
I am meeting more people living with ALS, either at conferences or via zoom, who are also “slow progression cases” — a few have lived with ALS for 20 years or more. I’m hoping to get a bunch of us to start a small project on slow progression ALS to learn lessons from the cohort. More on that soon!
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 normal range.
We finished the building of new handicap-accessible home this summer and have moved in and love it.
Though I have rotated off the ALS Association Board of Trustees, I am still serving as a volunteer on a couple of committees, and so am staying engaged on ALS care service and advocacy issues.
Along with some other people living with ALS, I’m looking into creation of a website devoted to evidence based, deliberative discussions on ALS issues for people with the disease. We feel there is need for that kind of space. Stay tuned, more on that soon!
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 not as collaborative as many of us want. But it has also been a period where we are seeing more promising results in research on ALS therapies to slow down or stop the disease, bringing us closer to the goal of making ALS a livable disease by 2030. And the ALS community has had some real successes advancing public policy goals and increasing funds for research on ALS.
I opted not to renew for a second term on the Association Board because I would like to be able to speak and write on ALS matters more frankly, and I couldn’t do that as a Board member without potentially creating complications for the Association. Some of us living with ALS are beginning a conversation about creating an independent platform for more open and thoughtful deliberation about ALS-related issues, far from the echo chambers of social media. I hope to have more news on that soon.
Once again, I am pleased to report in my bi-annual health update that I have had no disease progression since my last post in November 2022. It has now been about four years with no change in my condition, and over seven years since symptom onset. In March, I took another short trip for fieldwork to Kenya without difficulty, and I am planning two trips to Kenya and Somalia this summer. I’m still able to swim and golf. I’m increasingly hopeful I will be able to teach to full retirement age.
Karin and I are completing the construction of a new, handicap accessible home next door to our current home, and hope to move in in July. The new home is designed to accommodate a range of shifting accessibility needs I will have over time. We’re eager to move in; half of our house is already packed up. We sweated a lot of details to get the house right. I learned a lot about designing accessible homes and hope to share that with others down the road.
This summer, I am finishing up my 3 year term as a Board of Trustee member for the ALS Association. It was a rewarding and challenging experience, I learned a lot, and I got to work with some wonderful, dedicated people. I will continue to explore ways to play a role as a volunteer in ALS advocacy.
Our kids are all doing well; our youngest, Erik, will be a senior in high school next year and then will head to college. Six years ago, I wasn’t confident I’d live long enough to see him graduate.
I’ll end with a photo of me at the local municipal golf course, which now has disability-friendly golf scooters with hand brakes and a hand accelerator, and a swivel seat for easy access. Love it!
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 exhausted. That progress has been really exciting.
In addition, my respiratory capacity, measured as “forced vital capacity,” has crept back up to the low end of the normal range, which I have not been at for 4 years. I’m walking faster than I have since 2019. And, with more careful eating and more exercise, I’ve been able to gradually drop over 30 pounds since February, which helps my general health a lot (still more to lose!).
In October, I was asked to travel to Dadaab refugee camp in northern Kenya to support a workshop on new approaches to refugee local integration and self-reliance (I’d done an analysis for the consortium last year). I took the trip, with some apprehension about how I would handle the travel. It turned out not to be a problem at all. I walked a number of very large airports using only a cane, and managed the fieldwork without any trouble too. It was a thrill to know that my leg weakness is not yet an impediment to getting back to East Africa, where I had not been since COVID.
On top of all that, teaching at Davidson College has been a real pleasure this fall, I have excellent students to work with. And the family is doing well too. Our new home construction is coming along, so by next year (maybe August to October 2023?) we will have a fully accessible home for the time when I need it.
So I’m feeling great overall and am hoping that continues for a long time to come!
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!
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 level, and I’ve been watching and learning a lot. Not sure if I’ll ever get very good at wheeling around accurately and quickly like they can, but I’m enjoying getting some swings in, and enjoying being around a group of people who have been dealt a tough hand via accident or illness but who are making the most of it and living life to the fullest.
My overall health has stayed steady — I’m still able to walk a couple of miles a day using a foot ankle brace, still able to play golf. I was able to return to teaching this fall and loved being back in the classroom, though I can’t say I loved teaching with a mask on. My only struggle has been with fatigue — I just can’t work at the same pace as before the ALS diagnosis without getting very tired. So I’m cutting back wherever I can, listen to my body, and work and play at a sustainable pace. Occasional naps are part of the new normal, and that’s ok.
Our big news this fall is that Karin and I are moving forward with plans to build an accessible home on property we own next door to our current home. We have no idea when I will need to use a wheel chair, but better to prepare now. We’re learning a lot about accessibility design, and are excited to finalize the floor plans and start building mid-2022.
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 same or better levels than I could 18 months ago.
I recently took a business trip up to DC, and managed by myself just fine for four days, so I’m still self-sufficient as a traveler. Lugging baggage in and out of hotels is a little trickier than when I had full leg strength but can be done with a little planning.
As before, I’m trying not to get too excited about the improved leg strength, because I know how capricious this disease is. But whether this is a short term reprieve or a long term trend, it’s great news no matter how you slice it, and I’m very, very happy about it.
As for the ongoing question of re-diagnosis, the verdict from the neurologist is that for now we continue to treat this as a slow and unusual case of ALS. But I continue to exhibit symptoms that don’t match up well with ALS, and if these anomalies keep stacking up, the odds increase that this might be an ALS mimic. As I’ve written before, only time will tell. It may take years before we know. Years of uncertainty is fine with me.
Meanwhile, I am heading back to full time teaching at Davidson College in August with confidence that I can handle the work load, and hopeful that I can teach to retirement. I’m feeling good about continuing to be able to travel to conferences and conduct fieldwork (within reason), and maintain an active research agenda. And enjoy life with friends and family as much as I can!
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 