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