August 2019 – Ken's Caucus

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.

Health update, late August 2019

It’s been roughly three months since I shared my ALS diagnosis publicly and posted an encouraging update on my condition. Some friends have asked for an update. Here is the latest.

The short version, and the good news, is I continue to be generally stable. I can still walk 2-3 miles at a clip, and muscle weakness remains confined to my legs.

The longer version is a bit more complicated and puzzling. Over the summer, I noticed a deterioration in my gait. It was harder to walk, I slowed, and muscles in my thigh and quads were sore. I never fell, but I felt less stable on my feet. Eventually I realized that the problem was mainly my left foot and ankle, which had become a lot weaker in a short period of time. I was having to use other leg muscles to compensate.

But at the same time, my right foot and leg — which was where the trouble first started — continue to grow stronger. The result is that I now have a right leg that feels more reliable than the left leg, a reverse of the past two and a half years. The motion sensors I wear as part of a medical project to gauge velocity and strength in my limbs have produced data that supports this observation.

There are several possible explanations, all of which are long and boring, so I’ll spare you. My hope is that the same trajectory which my right leg is taking — weakening and then re-strengthening — is what will happen to the left leg, and that the new drug for ALS I am taking (Radicava) is responsible for the re-strengthening. Time will tell.

Meanwhile, I’ve bought a walking cane, mainly as a precaution, and I’ll soon start wearing a foot brace that wraps around my calf and slides inside my shoe to help with the left foot drop. When I tried the brace on at the clinic last week it made a huge difference in my ability to walk with a better, steadier gait. That will be very liberating.

Undercurrents

All the fragmentation and divisiveness in the ALS advocacy community can be discouraging. But the past few days have also reminded me that just beneath the choppy and roiling surface are deep currents of cooperation, coordination, and commitment to unity of purpose. At the operational level, where it matters most, the community is doing a much better job of working together.

First was the news that three ALS non-profit research funders – ALS Finding a Cure, the ALS Association (ALSA), and the Muscular Dystrophy Association (MDA) – announced a joint $2.5 million grant to support a promising multi-year ALS clinical trial. That is a great example of combined efforts to fund research, which will yield greater efficiencies and scale.

Next, I traveled to my local ALS support group in Charlotte yesterday, and there was very pleased to hear how the three main ALS service providers in the area – ALSA, MDA, and the Joe Martin ALS Foundation – routinely work together to combine resources in support of people with ALS and their families.

Finally, this afternoon I joined a conference call for a task force assembled by ALSA to help conceive and execute an important project. I was blown away by the number of people willing to volunteer significant time to this project despite having full time jobs. Many to most on the task force are people who have lost a loved one to ALS and who are giving their time and expertise to help strengthen organizations like ALSA dedicated to finding a cure. Those of us with ALS don’t thank nearly often enough those many volunteers, who really make these organizations work.