Jul 4, 2014

ALS Still Bites

Bachblog Etch-a-Sketch I sometimes read the blogs of PALS and CALS (“Persons with ALS” and “Carers for Persons with ALS”). Unsurprisingly, these blogs are as individual as the persons who write them. Some write very personal, wrenching accounts of day-to-day struggles with ALS. These include those with the willingness and talent to create powerful video records of the inexorable ravages of the disease. Others share their unique and very individual spiritual and philosophical perspectives on life and death with ALS. Still others focus their efforts on advocacy and on raising awareness with the goal of contributing to a better future for those PALS and CALS who will live with this disease in the years to come.

Where does my blog fit in this community of ALS bloggers?

You may notice Bachblog is not really very blog-like. I think of it as a digital Etch-a-Sketch where I doodle in public: just something to futz with while I listen to music in my home office. I take my comments “off the air” so to speak (click on Feedbach to send me email). But I do use blogging software, the name “Bachblog,” and I have ALS. So I am a PALS with a blog.

MLB honors Lou Gehrig on the 75th anniversary of his speech Certainly this is not a blog about ALS or about living with ALS. Sure, buried under pixelated reams of nonsense—book reports, Scrabble tournament logs, the ravings of A Brain, crossword puzzles, musical thank you notes, bird droppings and more—it is possible to find an occasional ALS-related post. In fact, I count some 20 “ALS Bites” posts at the top of the site index. Nearly half of these were written during the time I was being diagnosed more than three years ago. But recently, at least, I have not had much of an interest in dwelling upon the disease or my experience with it. Not here on my blog anyway. Today, though, on the 75th anniversary of Lou Gehrig’s famous speech, I wonder if I shouldn’t address it more regularly.

If I do more blogging about ALS, I suppose I will include elements of all three styles referenced above: personal, philosophical and advocational. I can think of a wealth of topics of interest to me. In no particular order, I would like to bloviate on at least some of these subjects: How effective is the ALSA? — Technology as the cure — Is there a miracle drug on the horizon? — Miracles, placebos and charlatans — My retirement — ALS humor — The “ALS class of 2010/11” — ALS forums and bloggers — Choices — The VA and ALS.

While I still can use my computer reasonably well, I think I will try to post regularly (every two or three weeks?) about ALS without writing a series of “here is the latest bad/sad news about me” posts. Only time will tell if I can manage that.

In recognition of the 75th anniversary of Lou Gehrig’s speech, here is a one-minute public service announcement aired by the History Channel:

Lou Gehrig was diagnosed with ALS on June 19, 1939 on his 36th birthday and gave his famous speech on July 4 of that same year. He died less than two years after his diagnosis—seventeen days before his 38th birthday—on June 2, 1941. Three quarters of a century later, there still is no cure or effective treatment for the disease. Better care and technology have helped to extend life expectancies, but not by much. According to the ALSA, “life expectancy of an ALS patient averages about two to five years from the time of diagnosis.”

My own diagnosis came just over three years ago at the age of 50. I’m not sure I would go as far as Gehrig and call myself “the luckiest person on the face of the earth,” but I am lucky in many ways and have, like he did, a lot to live for.

Recent ALS Bites:

DATE	TITLE
02/28/2019	Unhappy Anniversary
05/12/2017	The Eyes Have It
08/04/2016	YFALS National Corntoss Challenge
07/18/2016	Scopolamine Blues
03/06/2016	Dragon Me Down