Good news at my most recent consultation

Since April 2018, I having going in for quarterly consultations and tests at the Carolinas ALS Center at the Neuroscience Institute in Charlotte.  These consultations are nerve-wracking affairs for persons with ALS, as we are always fearing learning about drops in our vitals or our muscle strength (I’ll write a separate blog entry about this).

I just went back in late May for a visit and am happy to report very good news.  I have not only been holding steady in my condition, but I learned from the ALS specialist, Dr. Benjamin Brooks, that most (not all) of my leg muscles have actually increased in strength compared to a year ago, in some cases significantly so. This is pretty unusual. I left the office very happy to be an outlier.

The ALS Center’s findings are the ones that matter the most, but they are not the only yardstick I use. Two other metrics I find useful in  measuring the progression of the disease have also been positive. One is a program called Precision Medicine Program, which  provides me with motion sensors that I wear for one week each month. The exercises I do as part of that program have also shown a steady increase in my leg velocity capacity over the past four months. The other metric is my own set of observations that I record — my measurement of my performance on the elliptical, stationary bike machine, leg weights, and walking to work. None of those has seen slippage over the past year.

I’ve learned that it’s important not to over-interpret these kinds of results. The disease has its own trajectory in each person, including temporary improvements or long periods of stability before a downturn.  But even so, getting stronger is a lot better than the alternative, so I was very pleased to hear Dr. Brooks’ clinical observations.

Why the greater leg muscle strength is occurring is unknown, for now.  The most hopeful interpretation, both for me and for other persons with ALS, is that my body is responding well to the new treatment (Radicava)  that  I’ve been receiving since September.  Radicava was only approved by the FDA in 2017 and we’re still learning about its potential in slowing or stopping ALS progression. It’s part of the bigger picture of a bunch of new therapies medical researchers are developing for ALS and other neurological diseases.


Thank you, and a note on “impact giving”

Friends and family have contributed an amazing $20,000 to “Ken’s Caucus” in support of the ALS Association’s May 2019 Walk to Defeat ALS fundraiser. Those funds will support research to find therapies to slow, stop, or cure ALS, and provide vital support to people with ALS and their caregivers. To all of you who contributed, a very heartfelt thank you!

I know that most giving to causes like “Ken’s Caucus” is done mainly as a general signal of support to the person with the disease or condition. Experts on charitable giving refer to this kind of contribution as “impulse” giving, as opposed to “impact” or strategic giving. The latter is viewed by experts as more intentional, more focused on achieving a specific impact.

I’d like to propose reframing your contribution to the Walk to Defeat ALS, so that you see it as impact giving and not just as a kind gesture — though the two are not mutually exclusive! The funds provided to the ALS Association today are arriving at a critical moment — a post “Ice Bucket Challenge” moment — when a whole generation of exploratory research made possible by the Ice Bucket Challenge is now producing promising leads on therapies that are in the pipeline for clinical trials and that are now competitive for NIH funding. ALS scientists are stating publicly that they believe a therapy to stop or reverse ALS will be developed within five years. This is huge. This is the moment for a big push to support research, both by private contributions and by the National Institutes of Health, the largest single funder of medical research.

Your contributions are critical and very well timed at this pivotal moment in the battle against ALS. You are a stakeholder in our collective public effort to defeat ALS. Every dollar of support we provide for the big push against ALS today is very much “impact giving.” Thank you!

the inaugural 2019 Ken’s Caucus walkers

Sharing the diagnosis

Dear friends and colleagues,

I have some bad personal news to share, but news that is leavened with some hope.

I have been diagnosed with ALS, or Lou Gehrig’s disease.  As you may know, ALS is rare, incurable, progressive, and 100% fatal, usually within 2-4 years of diagnosis.  As Lou Gehrig said in his famous speech in Yankee stadium, it’s a “bad break.”

But it soon may not be as bad a break as it was for Lou Gehrig and the hundreds of thousands of people who have died from ALS since his time.  Those of us with ALS today hold onto a glimmer of hope that advances in research on ALS are bringing us closer to the day when we will possess a cocktail of therapies that can render the disease chronic and not fatal. We are hoping to be the first generation of ALS victims who survive the disease. We’re in a race against time.

In my case, I have added reason for hope. I have already been suffering from symptoms of the disease – foot drop, leg weakness, and leg stiffness – for 2 ½ years (I was formally diagnosed in March 2018).  And yet I am still ambulatory — just slower. My leg strength has remained stable for the past year, and I have not seen any symptoms spread to my upper body. I walk a mile or two every day. I am, for now at least, part of a small percentage of  “slow progression” cases – ALS victims who often live 10 or more years. Slow progression at onset is the best predictor of continued slow progression.  If this continues, it will buy me more time for a treatment to be developed.  Every month that passes with no change in my condition gives me more hope.

Until now, I have opted not to share this news beyond a very small circle of people  because I did not want people treating me differently, as a “dead man walking.” I hope you can continue to treat me exactly as you have before. I am still able to fulfill all of my work functions as before, and hope to maintain an active research agenda and teach straight through to retirement.

I am aware that interacting with someone who has a terminal diagnosis can be awkward, so let me give your some guidance. First, I have thick skin and a sense of humor, so unless you’re exceptionally gifted at saying the wrong thing, you can’t say anything to me that will upset or offend me. Please don’t walk on eggshells around me.  Don’t worry about using words or raising topics that inadvertently bring up my condition; I do it all the time myself, it’s unavoidable. You can opt to ask about my condition (I’m always happy to provide an update), or not say a thing, both are fine. If you want to let me know you’re thinking of me but don’t know if stopping me on the sidewalk or a hallway to ask is appropriate, I will gladly take a passing fist bump as a silent message of concern and support. 

Most of all, know that I’m not sitting around feeling sorry for myself. I’m feeling good, enjoying life, and trying to make the most of the time I have. I’m not in denial – I know how monstrous this disease is – but I’m optimistic about my chances and energized about all the things I want to do.

My wife Karin and my kids are doing well so far too. It was hard news for them to take at first, but because my condition is stable, our day to day lives have not changed at all.

Why disclose this now? First, because I’ve known I’d have to do it sooner or later, and ALS support groups suggest that sharing the diagnosis is better for you than bottling it up. I’m generally a “bottle it up” kind of guy and that’s worked fine for me in the past, but I’m taking their advice this time.  Second, there are opportunities starting this summer for me to advocate for changes in laws affecting ALS victims’ access to Medicare and Social Security Disability Insurance, and for more funding for research into ALS and other neurological diseases. I will be a better advocate and fundraiser if it is known that I myself have ALS, and can share my narrative – my quest to outrun the disease until medical science comes up with the therapies to stop or even reverse it.

Thanks in advance for your prayers and support. I look forward to the day when we celebrate beating, or at least containing, this disease.

Best, Ken