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.
Today I posted on facebook (which I don’t do often) that I spent my 60th birthday playing golf on a beautiful fall day. I got a lot of nice birthday greetings in response, a couple of which marveled that I was still able to play golf despite having ALS now for four years. The confusion is understandable – our messaging about ALS is that median life expectancy is three years. If, statistically, I shouldn’t even be alive, how am I well enough to play golf?
The answer is that I appear to have a “slow progression” version of ALS. No one knows why, but a fraction of people with ALS (about 10%) live 10 or even 20 years. The fact that my ALS symptoms are still confined to my legs, and my leg strength has not really changed much in 18 months, is a clear indication I have slow progression. That is no guarantee it will continue that way – my condition could change for the worse at any time. But for now it has allowed me to proceed with my life with only minor adjustments. I am still working full time; I can walk a mile or more at a time, slowly, using only an ankle brace (though for long walks I use a roller just to be safe); and I can play golf as well as I could before (which is to say, still not very good). The AFO (foot ankle brace) is a huge help in keeping my weak left foot and ankle stable while I hit and walk In some ways golf is the perfect sport for me now, as it involves walking a lot, but for short distances, and then sitting in the golf cart, which gives my legs a quick rest.
I had my first clinical consultation since January (delays due to COVID-19 disruptions) and the results were excellent. No notable disease progression, and the symptoms remain confined to my feet and legs. The docs were very pleased and intrigued by the very slow progression. I can still walk a mile using a foot ankle brace and either a cane or walker, and I can still play a round of golf. I do tire easily, especially if I have to stand for a long time. But overall the report is very positive. Thanks to all of you who have asked!
This evening, I completed the last grading of papers and exams, turned in final grades, and closed the book on the most exhausting and stressful semester ever – for me and every college student, professor, and administrator in the country. COVID-19 made the past two months an ordeal for all of us in higher education. And we face huge challenges ahead. Until a vaccine is developed or effective herd immunity achieved, there will be no “return to normal” at our universities. And the economic impact of COVID-1 on universities and families’ ability to pay tuition will be felt for years. We’re sailing into uncharted waters, and face a lot of hard decisions based on fragmentary information.
I am very fortunate not to have to be part of the collective effort to figure out how to hold classes and keep students and staff safe next year. My term as Vice Chair of the Faculty at Davidson College is drawing to a close, and with it my administrative duties. I am about to start a full year sabbatical, which I hope to devote to research and service. Research will mostly be dedicated to work on Somalia, including, I hope, completion of a book project. Our family plans to relocate to Nairobi Kenya for the year have been put on hold for obvious reasons, but we will revisit our options in January.
My service work this coming year will be mainly devoted to volunteering with the ALS Association on the Board of Trustees and various committees. Like universities, non-profits face monumental challenges due to COVID-19, even as demand for their services is spiking. I hope to be able to help navigate the challenges the Association will face this next year.
Personally, reaching Day 1 of my 2020-21 sabbatical is something of a milestone. When I was first diagnosed with ALS in March 2018, I had no way of knowing whether I had slow, typical, or fast disease progression. The sabbatical was still over two years away, and it seemed then that just getting to the sabbatical alive would be an accomplishment. Now here I am, and I’m still able to work and travel and do most of what I want to do, just with a slow gait and a limp. It might be audacious, but I’m now starting to think my next goal should be to work until retirement in 6-7 years… I love teaching, and when you love your work, you want to do it until you can’t anymore.
It’s been a while since I shared an update on my health. If no news is good news, then this is a good news blog post. I haven’t had any significant progression in the ALS since the last posting. I sense a very gradual weakening in my leg strength, gradual deterioration in my ability to keep my balance, and slight worsening of the foot drop which slows down my walk. But it hasn’t translated into any changes in functionality. I just took a 2 mile walk with Karin. I am using an AFO (foot-ankle brace) on my left foot to reduce risk of tripping — it’s been a wonderful piece of equipment. And I’ve started to use a walker for longer walks, even though I can probably do without it for now. Anything to avoid a fall and a trip to the hospital during the COVID-19 pandemic — it pays to be careful these days.
After two months of very careful self-isolation in the house, the family and I are on a short trip to Pawley’s Island, SC, where we are social distancing in a new and nicer spot. It feels so good to get out of the house, and even better to enjoy a walk on the beach. We’re in a spot at the edge of the island so very few people are on the beach, making it super easy to keep safe distance. I will happily grade final exams and papers, and do all my zoom meetings for the college and the ALS Association, on a porch looking out over the quiet marsh here.
The walker works great on the hard sand of the SC beaches. and it doubles as a beach chair when I get tired!
I’ve just started serving on the Patients Like Me Team of Advisors. It’s a one year term, and involves providing patient input on the Patients Like Me forums, data collection, privacy issues, other matters. We had an initial meeting in Boston where each of us was filmed for a short introductory video, which you can find here: https://www.youtube.com/watch?v=5WjvUBiKwHk&feature=youtu.be