ICYMI: Taking on ALS

My latest op-ed, title above, appeared in The Virginian-Pilot Thursday.

Helene_SteveSometimes, a picture is worth a thousand words. This picture is one that I have had in my home office for 13 years. It is from my 40th birthday party. This August, it will have been 40 years since I first met Helene, my math teacher in the 8th grade, who has been my friend and mentor all these years. Her husband, Steve, has been living with ALS since his diagnosis in October 1994.

Steve’s longevity with the disease was something that I could point to when a couple of other people I know were diagnosed. The prognosis is grim: only 10% of those diagnosed with ALS live longer than 10 years. When another Steve informed me that his wife had been diagnosed, I told him about the first Steve.

My own definition of ALS is Alzheimer’s of the body. The brain stays intact while the muscles atrophy. So Helene’s Steve still has his wicked sense of humor (one that, admittedly, it took me a long time to get – I thought he was just a jerk in the early years of their marriage). I first saw the eye-tracking technology at their home – Steve was using it – years ago.

So yes, it made me mad when I read about yet another Steve. And it damn near broke my heart when I talked to Helene about the exciting new breakthrough – the identification of the C9orf72 mutation – and discovered how they had stepped away from the ALS community 10 years ago, basically giving up hope for any treatment, much less a cure.

This is not an orphan disease. There are real people living – and dying – with it. And I am hopeful that the treatment will come – soon.

All of the Steves deserve nothing less.

My column appears in The Virginian-Pilot every week, usually on Thursdays. You can see the columns as they are published here, or navigate to them from the PilotOnline.com homepage by clicking on Opinion and then choosing my name at the bottom of the dropdown list. You can also see the columns by liking my Facebook page. Although my column appears weekly, I am not and have never been an employee of The Virginian-Pilot.