Thursday, May 6, 2021

May is 5 years for me and ALS Awareness Month


Family, December 2020

Twenty to twenty-five percent of people diagnosed with ALS survive five years or more. I’m coming up on this milestone in 2 weeks and will very likely join that statistic. Five years has seemed, to me, almost like a separate lifetime: life before ALS and life after.


What keeps a person “going” who has a relentless, terminal illness?

Having a purpose in life.


I always had very strong reasons for living and working. As ALS has progressed in these five years, some of those life purposes have necessarily been changed. My physical condition has gone from fair to mostly poor. Anything requiring robust activity has had to change. The pandemic year has made the transition easier than it had been by promoting the use of online, computer meetings for keeping in touch with people.


My purpose is to help people—however I can in this state—and for as long as I can.


I can provide inspiration to young people starting out as scientists.


I can provide financial support for family and for larger causes like the Golden West ALS chapter and research funds for young students.


I can provide an “Ear” to friends, family, and colleagues.

And when asked, I can provide advice.


Seth Newsome & Family with Sora Kim & Family, 2021

How I help people has changed: I can no longer hop on an airplane or jump in a car, so people have to come to me or we interact remotely. I’m no longer going into work on a daily basis, but I work from my computer at home. I can no longer shop for nice presents, but am pretty good on Amazon and the internet.


I can still give you a hug—although a bit feeble—now that I’m vaccinated.


I can still laugh and talk.


And most important for me, I can still write.


May is National ALS awareness month. See my personal journey (ALS blogs) and Evan’s movie about me (2019 Movie).


New horizons are appearing for figuring out how to treat this disease, but it’s more complicated than we thought—even 5 years ago. Over 50 genes, with potential mutations, can cause ALS, most of them not inherited. In my case, I did not inherit the genetic basis, but something along the way made small—but important—alterations to how my nerves work. If I knew which of the possible 50 genes were not working for me, maybe, just maybe, we’d be able to figure out a drug that would “fix” the problem. This is unlikely for me, but for those getting the word that they have ALS today, there is hope.


The Golden West Chapter provides hands on practical help to me, as well as contributing to timely research to figure out how to arrest the progress of this disease. To donate: (Golden West ALS)



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