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
Category: Personal reflections and health updates
updates on my health, work, family, and general observations on living with ALS
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
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
When Former Caregivers Stay Engaged
A note of thanks to share during National Caregiver Month
Former caregivers of loved ones lost to ALS have every reason and every right to want to get as far away from that illness as they can. Every time they hear about ALS must bring back painful memories. No one can blame them if they walk away once the caregiving is done.
Which is why I am so impressed by and grateful for the huge number of former ALS caregivers who commit themselves to volunteer positions in our many ALS organizations. They make up a sizable percentage of the fundraising teams and board members in our groups, at both the local and national level. And they devote time on support forums to provide help and advice to current caregivers.
It’s not hard to understand why they do it – to honor the memory of their lost loved one, to support people going through what they went through, and to work for a cure to spare others of what they and their pALS went through.
What is harder to understand is how they do it – how they cope with the memories and emotions they must feel every time they encounter one of us with ALS, every time they are part of a conversation about support to current caregivers and pALS. These are people with special courage.
I know a thing or two about this. My younger sister, Janie, the second of four children, was born with severe developmental disabilities and required intensive, full-time care throughout her short life. My young parents, especially my mother, had to take on the very difficult job as a 24/7 caregiver for Janie with few resources and while trying to raise a family and pay bills. Luckily my grandmother was there to help. Looking back, I don’t know how they did it. It was a difficult, exhausting time for all of us. It made those years of my childhood less carefree than childhoods are supposed to be.
After Janie passed, I walked away. I avoided any volunteer or other engagement for causes involving children with severe developmental disabilities. It was too close to the bone, too difficult to revisit those hard times. I just wanted to close that chapter of my life and move on.
As I watch so many former ALS caregivers — now my colleagues — throw their energies into our ALS organizations, I look back with regret that I did not have the strength to explore ways to support organizations dedicated to my sister’s condition. But it puts me in a better position to fully appreciate how much emotional strength it must take our former caregivers who remain engaged in the fight to defeat ALS.
To all of you former ALS caregivers still helping us fight the good fight, you have our deepest thanks and admiration for all you continue to do for us. You are honoring the memory of the loved one you lost in a very powerful way.
Some great news to share!
Each year, Davidson College awards one or two faculty members with the Boswell Family Faculty Fellowship. The fellowship provides the recipient with a full year paid sabbatical (normally our paid sabbaticals are for a half year).
This month I learned I am the recipient of the fellowship for the 2019-2020 academic year.
I can’t express in words how much this means to me, and how much freedom this gives me and my family to plan for the sabbatical year ahead. I plan to complete the book on the crisis in Somalia since 1988 that I have been wanting to do for years. And I’m hoping to do more research, writing, and advocacy on ALS matters as well. Karin and I will wait until spring to assess the state of my health before deciding whether to relocate to Kenya for part of the year, or stay back home. We now have a wealth of options, which is a great luxury.
I am very grateful to the Boswell family for their generous support of Davidson faculty development, and to the College for its vote of confidence.
Health update, late October 2019
I’ve gotten a number of inquiries from friends asking how I’m doing, so I thought I should share a quick update.
I just had a quarterly consultation with my ALS clinic this week, and it’s again mostly good news. My vitals, my breathing, and my core and upper body strength are all great. My right leg is maintaining its strength. The setback I had starting in summer — a much weakened left foot — remains a problem, but does not appear to have gotten worse since the summer. So, I’m a bit slower and more wobbly on my feet than 6 months ago, but otherwise stable.
I’m still doing most of what I want to do. I can still walk 1-2 miles at a time, and recently played a couple of rounds of golf at the beach without trouble (in fact, Tom Kazee and I tied for first in that member-guest golf tournament, earning each of us gift cards for redemption at the Caledonia golf pro shop, so I got some nice Caledonia golf swag! Thank God for high handicaps). I also traveled all the way to Kenya for a workshop and managed the airports fine. I went to a Clemson game with brother Pete, and visited my sister Susan for her birthday in CT and did one mile of the local Walk to Defeat ALS with her, our parents, and some of Susan’s friends. My family and I are planning a big “bucket list” trip this winter to tour the Grand Canyon and southern Utah, which I’ve always wanted to see.
Realistically, this is about the slowest disease progression I could hope for. With each passing month I have more hope that I will be a true “slow progression” case. Time will tell.
I am now using a cane, just as a precaution against falling, and have been fitted for foot braces (AFOs) and will start to use those to reduce the risk of tripping because of foot drop. So far, no falls, but I definitely notice that I’m working harder to maintain my balance, a bit like one feels on a ship at sea.
Getting to work each morning got a lot easier thanks to my brother Pete and sister in law Stephanie, who loaned me their golf cart, which is fitted out with everything to drive legally on streets with speed limits 25MPH or less. That allows me to park right up against my classroom building at Davidson College and has been a godsend.
Karin and I are doing some early planning to get ahead of the curve for when the time comes that we need to make bigger adjustments to my declining mobility.
Meanwhile, I continue to teach full-time at the college. I’m staying very engaged in ALS advocacy work with the ALS Association and am starting to feel a bit better informed and better-positioned to start to weigh in on a variety of ALS policy matters. Karin and I traveled to an ALS training workshop in Florida in October and I have committed to serving as an “ALS research ambassador” for the group (Northeast ALS Consortium) that generously provided the training. I’ll be posting a series of essays on the challenges of ALS advocacy on this blog soon. Stay tuned!
And, as always, thanks for asking how I’m doing.
I can still walk the half mile to my office at Davidson College (for that matter, I can still walk 2-3 miles at a go if I have to), but I’m preparing for a time when that starts to get hard or impossible. The solution? My brother Pete and sister-in-law Stephanie own a golf cart that they have used to move around their neighborhood. It actually qualifies as an electric car — it can reach 25 mph or more and has all the essential features of a car, from lights and turn signals to side view mirror and seat belts. It’s got a SC license tag and registration and is insured. They offered to let me borrow the cart to get to work and back so I can pull right up to my building and, when the time comes, carry a foldable walker in the cart. After checking with the college public safety office and the town police, it’s all legal and approved, so now I have a new and very, very convenient way to get to work each day. There is a cut-through path from our road to the college parking lot that I use to avoid traffic altogether. Thank you Pete and Stephanie! Next step is to decorate my new ride with some Davidson, Xavier, and Clemson pennants, and a “Defeat ALS” bumper sticker…. I’m also trying out a leg brace to help with foot drop. It helps a lot, I can walk with a better pace and gait, and worry less about tripping up. Mobility is a precious commodity….
Thank you, Cincinnati kin
It was great to see this photo of family and friends in Cincinnati gathering for the Walk to Defeat ALS today. They raised over $4,000 for the “Ken’s Caucus” fundraising team. Special thanks to cousins Angie Menkhaus and Phil Menkhaus for organizing this. It means a lot to me. Thanks everyone!!
Living a Good Life, Fighting a Good Fight
By chance, I learned two weeks ago that a classmate of mine from Xavier University passed away of ALS in 2015. We didn’t know each other especially well, but we ran in some overlapping social circles. I remember him as a thoughtful, smart, slightly eccentric, very amiable guy. His surviving spouse, also an old friend of mine, shared with me a link to the blog he kept during the one year he had between diagnosis to death. ALS took him quickly.
I read his blog in reverence. My old classmate, in rapidly declining health, used his last year to celebrate life, contemplate philosophy, literature and religion, write and share haikus, visit with good friends and family, enjoy a glass of wine with his wife, find humor and subtle symbolism in his failing body, and approach impending death with grace and equanimity. I recognized how our immersion at Xavier in philosophy and theology – thank you , Jesuits – better equipped him to address suffering and dying, and, like the Stoics, be better for it. I’m sure there were plenty of terrible moments of struggle, anguish and pain, and he let on that that was part of his life as well, but that was not the part that defined him. What defined him was his humanity and his broad spirituality. His blog was a huge gift to me, a reminder that I can aspire to meet death and dying with the same grace that he did; that confronting one’s mortality can make you a better person.
The question I am wrestling with is this: how can I simultaneously fight for life and live life well? Can I aspire to the same kind of centeredness and peace that my classmate achieved while also jumping into the contentious, even toxic world of ALS policy advocacy without making myself miserable and potentially wrecking the time I have left? Many (not all, thankfully) of the people with ALS engaged in trying to fight for policies and research funding to improve their chances of surviving the disease seem so bitter, angry, and unhappy. It’s demoralizing, and not who I want to become.
For now, my conclusion (subject to change): I’m going to try to find a role in the ALS advocacy world where I can be of service, if not for me then for the next generation of people with ALS. But I will not let that policy engagement destroy my aspirations to celebrate life, enjoy love of friends and family, and find a measure of the peace that my classmate achieved.