Tag: ALS

My Own Story of ALS


I would like to introduce our newest regular contributor, Al Lewis. Some of you might recall him from his guest-postings, sometimes offensive, usually controversial but always based on both fifth-grade arithmetic and principles of economics, two subjects that he respectively took in fifth grade and taught for two years at Harvard.

Al is asking for a tiny bit of help from us, which is to go to his ALS site and “like” it and maybe add a facebook comment.   He is trying to get CMG Marketing (the official licensing contractor for Major League Baseball) to sell Lou Gehrig jerseys to raise money and awareness for ALS.  Increasing the popularity of that site increases the likelihood of his getting CMG’s attention with his fundraising idea. –  Matthew Holt

It occurred to me that I have yet to post my own story in detail, and some of you asked me to do that after seeing my wedding photo.

Janet and I had dated for a while, and though we had broken up, we had become more like “besties” when she started to feel that something was amiss.  I (and other close friends) took her to several doctors to try to discern what was wrong.   I know many of you experienced the same thing with your loved ones, where you had to visit multiple doctors before getting a diagnosis.   Then came the day — and no doubt you had a similar day too — when you finally get the definitive diagnosis.  The Mass General neurologist, Dr. Cros, had very thoughtfully scheduled this visit as the last one of the day, so that the four of us there could be in his office into the evening, asking questions, holding back tears, cross-examining him to make sure we hadn’t overlooked any possibility for treatment, even something in early-stage clinical trials, with mice even.

After that, we went about our lives.  Of course I continued to be supportive as best friends would be.  But I couldn’t stand to watch her deteriorate in front of me like this.     At one point her condition had declined so much that at her health club (Mt. Auburn) where she had been a member of for 20 years, someone asked what was wrong.  About a day after I told the person at the front desk, the manager wrote back and said he was going to comp her membership for the rest of her life.Continue reading...