Health update August 2021

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!

Health update April 2021

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.

enjoying BBQ with Dad at Folly Beach, March 2021

Yes, still playing golf with 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.  

Health Update September 2020

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!

Sabbatical, Day 1

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.

May 2020 health update

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!

My “Patients Like Me” Introductory Video

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

Our Bucket List trip to the Grand Canyon and southern Utah

My professional work has allowed me to travel much of the world, including to some extraordinarily compelling and difficult-to-access places. But I’ve been less well traveled within the US. One trip on my Bucket List has been the Grand Canyon  and southern Utah. I really wanted to experience it while still relatively mobile. So this Christmas, our family gift to one another was a trip out West.

It was even more spectacular than I imagined.

We rented an SUV in Phoenix and started off in Sedona; the red rock cliffs were beautiful, and I managed a 2-3 mile hike on up-and-down and uneven terrain in Red Rock State Park. Then came the bad weather – a major snowstorm that hit north of us, burying Flagstaff, the Grand Canyon, and most of the high altitude locations in southern Utah with anywhere from 4 to 12 or more inches of snow. We made our way through the snow to Flagstaff, and then the Grand Canyon. The roads were ok and though the view at the Grand Canyon was very limited when we first arrived, the snowfall made for beautiful landscape and appeared to scare off many tourists, as the park was not crowded. Thanks to a Christmas gift from my brother and sister in law, we stayed at the historic El Tovar lodge right at the edge of the canyon. The next day, the clouds and snow gave way to clear skies and we were treated to spectacular views in a cold, winter wonderland.

And the mind-blowing landscapes of the West continued, as we traveled to Monument Valley, Arches National Park, Capital Reef, the unbelievable route 12 up and over Boulder Mountain, Bryce Canyon, and Zion national park. All of the locations featured otherworldly combinations of impossible rock formations with soft, deep snowcaps.  We thought after a few days we’d get bored; but each new park brought more amazement. Except for Zion, which was crowded, the other parks were lightly populated with travelers, thanks to the snow, and in many cases we were alone gazing at eye-popping views.  We hiked for moderate distances at every park; the kids would hike at a normal pace and then wait for me to catch up, with Karin walking with me.  I used walking poles and that helped on the slippery snow and ice, but even so I still slipped and fell several times. The snow made for soft and harmless landings. Each time, my supportive family rushed to me and laughed uncontrollably at my “slow motion” falls before helping me to my feet…

We ended the trip in Las Vegas, where my sister and brother-in-law treated us to tickets to the Cirque du Soleil “O” performance, which was amazing.

When we first planned the trip, it was a calculated risk. It’s always hard to know if ALS symptoms will worsen quickly over the course of several months. I was prepared to have to stay in the car while my family hiked. But my legs held up fine and I was able to hoof it to everything I hoped to see, just slowly.  I’m a bit tired now, but am very, very glad we were able to pull off this trip.

Year Four with ALS

It was three years ago this month when I first noticed something was wrong. I was playing tennis, and when I tried to push off for a quick lateral move to hit a wide shot or poach it was as though my brain said “go” and the leg said “no.” There was a strange delay in messaging, and it meant that my first step was fine but the second one was dangerously late and awkward. I fell several times, to the point my doubles partners started to worry about me and I stopped playing. I initially attributed it to being out of shape after a lengthy recovery from a knee injury. But from the start it never felt like I was just tired or out of shape — it felt more like a disconnect in the messaging. And it was. It took me 12 months to mention it to my family physician, and another 3 to get the diagnosis.

So now I’m entering year four with ALS. The disease’s symptoms are, for now,  still confined to my legs, which are gradually weakening, in maddeningly asymmetrical ways. The foot that was initially weak is now stronger, the foot that was strong is now much weaker. Balance is hard — I walk very slowly and deliberately if without a cane or an ankle foot brace. Bending over to pick things up or tie a shoe is an adventure in balancing. But with the ankle foot brace (AFO) on my weak left foot, I can walk for several miles, at a reasonable pace, and work out on the reclining bike machine for an hour. Weirdly, it’s easier to hike a mile than to just stand with confidence without shoes at the kitchen sink.

This is all good news, under the circumstances, since the median life expectancy for people with ALS is only three years from symptom onset.  But as I enter year four, surpassing the terrible three year benchmark, I can feel the legs weakening, and can feel fatigue set in faster when I walk for long distances or climb stairs. So far, this has been a slow progression, and seems to suggest that I qualify as a “slow progression” case. But it’s still a disease progression, and like everyone else with ALS, I’m on the clock.

We’re all on the clock, of course. It’s just that some of us can see the sand moving in our hourglass a bit more vividly than others. When you’re “living on borrowed time,” it incentivizes setting clear priorities and making the best use of whatever time one has left.

For me, my priorities and goals for 2020 are to be a good role model to my children and students for how to handle adversity with as much grace and sense of humor as I can muster; to fight death without fearing it; to spend quality time with family and friends, celebrating everything life has to offer with them; to stay professionally active as a teacher and scholar; to redouble my volunteer work with ALS organizations to raise awareness, raise funds, provide quality care services, and  promote policies that expedite the search for therapies that halt or reverse ALS;  to work to build better collaboration, trust, and unity of purpose within an ALS community that is frustratingly and unnecessarily fractured; and to thank God every day that I have such a loving and supportive family to count on.

Training for the Santa Hustle Fundraiser

I got this….

Next Saturday (Dec 14) I’m helping to fundraise for the ALS Association NC chapter as we partner with the Santa Hustle half marathon. A variety of different groups are sponsoring one of the 13 miles to raise money, and will have an escort running alongside me as I attempt to finish the 13 miles on a recumbent trike. Training so far is looking good, I can complete 10 miles in 52 minutes. But stationary bikes don’t have to go up hills! A big thanks to Santa Hustle for partnering with the ALS Association, to Charlotte Cycles for loaning me a recumbent trike, and for all of you who have already contributed to the fundraiser. I’ll post photos, hopefully of me finishing the ride in one piece. The link to the gofundme page is here: https://charity.gofundme.com/o/en/campaign/santa-hustle-for-als