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.
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.
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.
Local story on ALS’s impact in the town of Davidson, NC
There’s a whole raft of illnesses and conditions that fall in the category of “rare diseases.” ALS is one of them. The “prevalence rate” for ALS – the percentage of a population with the disease at a given moment in time – is 5.2 per 100,000. Because the disease typically progresses so rapidly, and because confirmed diagnosis can take a very long time, only about 17,000-20,000 Americans are actually diagnosed with the disease at any given moment. That doesn’t sound like much out of a population of 330 million.
But when you reframe it, to focus on the proportion of the population that will die of ALS, the disease sounds a lot less rare. Roughly one in 600 people die of ALS. To help you visualize this, that’s about one kid in every graduation ceremony at a large public high school. By coincidence, at any given point in time, researchers claim that the average American knows about 600 people. So most Americans personally know or have known at least one person with ALS, more if they have lived longer and/or have a wider social network. If you expand this to the number of people each of us knows who have been impacted by ALS (such as relatives of the person with ALS) our contact with ALS shoots up dramatically. It goes from being rare to being a scar in every community.
The small town of Davidson NC, where I live, is living testimony to this. This story from our local web-based news site, News of Davidson, is a reminder of just how many people’s lives are affected by ALS. Six of us who live or lived in Davidson and who have ALS are featured in the story, but there are a number of other people living with ALS, from the past and present, with ties to Davidson or Davidson College.
Charlie Slagle, in Memoriam
A good friend, Charlie Slagle, passed away suddenly on July 2, and yesterday a memorial celebrating his extraordinary life was held in Davidson NC.
Charlie was a founding member of the “gonzo golf group” I have had the privilege of playing with in an annual golf trip each summer. We had just been together on the 2019 golf trip two weeks before his death. Charlie was in fantastic shape, which made his sudden death even more of a shock.
Charlie was a legend, a bigger-than-life personality, and made a huge mark everywhere he went, including during his long tenure as men’s soccer coach at Davidson College, where he coached our team all the way to the NCAA-I final four in 1992. I was in awe of Charlie from the moment I stepped on campus in 1991. He had unbelievable energy, always had a dozen balls in the air, was incredibly and invariably extroverted, and could make friends with an inanimate object. On our golf trips he chatted everyone up – wait staff, the starter on the course, everyone. The conversation was always the same: “so where you from?” Then, “what high school?” And with that meager amount of information, Charlie drew on his extensive recruiting experience and networking across the country, plus his prodigious memory for faces and names, to name someone – a famous athlete, a coach, a principal – from that school, to make a connection with his new acquaintance. There was no such thing as six degrees of separation with Charlie – he could always find a connection with a stranger within 1 or 2 degrees of separation. And he did this with such genuine enthusiasm and interest that it always disarmed the stranger who was about to discover they knew a person in common.
For me, Charlie was the older brother I never had (I’m the oldest in my family), constantly needling me, and setting up golf competitions within a round that I invariably lost. He gleefully mocked whatever I ordered for lunch, so much so that “Cobb salad” is now considered my middle name in the golf group. He never called me by my actual name. I was “the Minkster.” He had either a nickname or a special way of saying everyone’s name in the group. His swing was just terrible, a hunched over, choppy uber slice that left a divot that defied the laws of physics. But his shot always found the fairway, and his scores were always way better than they any right to be. Nobody could scramble like Charlie. The last round I played with him he played one of the best rounds he’d had in years, and I was glad I got to share the moment with him.
When Charlie learned I had ALS this spring, he decided to dedicate a thousand mile walk he was training for to raise money in my name for ALS research. That gesture meant a lot to me. It was so Charlie Slagle – always a big new project, a big plan, and always looking out for others. I’m sorry he never got to complete that walk, but I’m trying to think of a way to enlist a few hundred friends of his to do a surrogate walk in his name that will total 1,000 miles between all of us. It won’t be hard to find a few hundred friends of Charlie Slagle.
Rest in peace, Charlie, we lost you way too soon, and we will miss you.
I’m with my family in Sweden, visiting our Swedish relatives. My mother-in- law, Ruth, shared with me a theme from a radio broadcast she recently listened to about dealing with death and difficult diagnoses. The theme was “active hope.”
I have written a series of essays for the Joe Martin ALS Foundation entitled “I have ALS. Now What?” It is meant for people newly diagnosed with ALS. When the essays are posted on the Joe Martin ALS Foundation website I’ll share the link here. For now, in keeping with the theme of “active hope,” I share one section here, on prospects for new treatments that may soon enable us to survive the disease….
Surviving ALS? The prospects for new treatments
You have been diagnosed with ALS at a singular moment in the history of the disease. In the past, a diagnosis of ALS was followed by advice to “get your things in order” because the disease is 100% fatal. Today, we are part of a unique generation of PALS who have a chance – maybe a pretty good chance, maybe only a “puncher’s chance” — of surviving the disease. Thanks in part to the big funding push for ALS research that the 2014 Ice Bucket Challenge made possible, a number of potential therapies have now made their way through the (unavoidably slow) research pipeline to clinical trials. Medical scientists working on ALS are now voicing optimism that a therapy will be developed in the next five years that will either dramatically slow, halt, or even reverse the disease.
To use an over-worn cliché in the ALS community, “we’re in a race against time.”
If in fact we are getting closer to discovery of a therapy that will render ALS a chronic and not fatal disease – and it is impossible to know when this will occur – those of us with ALS today are either going to be the last cohort of PALS to die of the disease, or the first to survive it. I know which one I prefer.
The closest approximation to our situation is the discovery of a cocktail of drugs in 1995 that effectively treated HIV/AIDs. HIV/AIDs patients faced 100% mortality rates up to 1995; thereafter mortality rates plummeted, and today people with HIV/AIDs are able to live with the disease as a chronic condition.
Two factors, both outside our control, will determine if we will be able to benefit from effective therapies in time. First is the length of time it will take for these therapies to be discovered and approved, and the second is the speed of progression of the disease each of us is dealing with. One of the reasons many of us have joined ALS support and advocacy groups is to lobby hard for a big push by the National Institutes of Health (NIH) to increase funding for ALS research at this critical moment. Tens of thousands of lives potentially hang in the balance.
This is not meant to build up false hopes on our part, but it is to say we have a reasonable hope. I have found it psychologically very helpful to keep telling myself that I will be part of the first generation of PALS who survive this disease.
My new roles in the ALS Association
I want to devote as much energy as I can to the fight to defeat ALS and provide support to people with ALS and their caregivers, and the ALS Association has given me multiple opportunities to do this. I have now been asked to serve on their Public Policy and Communications Committees, and co-Chair the Patient and Caregiver Advisory Committee. There are a lot of issues to address and initiatives to pursue, and I hope to use this blog to share ideas and resources with others who are part of the ALS family. For now I’m still trying to get up to speed on all of the many issues I need to know more about. I’m monitoring and joining on-line forums for people with ALS to hear their concerns; reading up on the processes and policies of medical research and NIH grants; learning more about legislative asks we are pursuing; studying the literature on rare diseases; and mapping out the complex ALS political and social ecosystem, including relations between the many different advocacy and service groups working on ALS.
The 2019 Gonzo Golf ALS fundraiser
I’m not a frequent golfer, or a good one, but each summer since 1995 I’ve joined a group of friends who call ourselves the Gonzo Golf group for 4 days of non-stop golf in the Myrtle Beach area. We play 36 hours per day. It’s exhausting and loads of fun, and we spend a lot of time giving each other a hard time. Not exactly your typical support group… I’m mostly ridiculed for my selection of meals at lunch, and so have earned the unwanted nickname “Cobb Salad.”
Last year I learned about my ALS diagnosis just two months before the golf trip, and I assumed that it would be the last time I joined the Gonzos, which made the trip bittersweet for me. My friends were unaware of the diagnosis — I just told them I was limping because of some peripheral neuropathy the doctors were looking into.
Thanks to the slow progression of the disease, however, I was able to join the Gonzos again this month, and got in 6 rounds of golf over a long weekend. I was walking a bit slower than a year ago, but felt great and even got in a few decent scores and a couple of birdies. It meant a lot just to be able to play. My new goal is to play Gonzo Golf 2020.
What made the trip even more special is that the group decided to organize a fundraiser for the ALS Association around the golf outing. Each agreed to chip in a certain amount of money for every par or birdie any of us made over the course of the trip. The group ended up raising $2,000! I am so grateful to all of them for this amazing act of generosity and support.
A big shout out to Richard Terry, Tom Kazee, Sharon Kazee, Larry Garloch, Kirk Karwan, Pat Kirwan, Sam Adams, Jim Wright, Charlie Slagle, Todd Hermann, and Thomas Hazel. As always, thank you Tom and Sharon for letting us crash in your house and for all your hospitality. And special thanks to Richard for conceiving and organizing the fundraising.
The photo is missing Thomas, Sharon, and Pat — next year I’ll time the photo shoot better to make sure all of us are in it!
I’ve been invited to serve on the board of the ALS-Association Public Policy Committee and have gladly accepted. I’ll be attending the ALS national advocacy conference in DC next week and hope to play a very active role. First, I have a lot to learn about the agenda and strategy for lobbying for changes in laws and funding of ALS research. Stay tuned.