From ALS Bites

Oops, I’ve Joined the Wrong Club


What Now?

The Iron Horse, Lou GehrigIn Annie Hall, Woody Allen’s character says “I would never want to belong to any club that would have someone like me for a member.”1 Lots of people feel this way: they would not want to belong to any club that would have someone like Woody Allen for a member. I’ve belonged to clubs that would (and did!) have me as a member, and while I wouldn’t want to join the “I married my (sort of) step-daughter club,” I wouldn’t necessarily decline to join a club only because someone like Woody Allen belonged to it.

Then there is an exclusive club that boasts such members as Lou Gehrig, Stephen Hawking, Charles Mingus, “Catfish” Hunter, Huddie “Leadbelly” Ledbetter, and Mao Zedong. This is not a club I ever expected or wanted to join. But last Tuesday, February 15th, I had my fourth EMG test, and my neurologist gave me the unwelcome news that I am now an official member of the ALS club.

I’ve known for more than a half year that this day was coming. Eight months ago I’d had two EMGs, two MRIs, and a battery of blood tests before Dr B told me and Joann that she suspected ALS. She fumbled for possible differential diagnoses without coming up with anything convincing, and told us that she was referring me to a top specialist at the University of Minnesota. We both knew that she was probably right. Competent and compassionate neurologists are very reluctant to suggest ALS unless they are pretty sure of it. She was clearly competent, and visibly upset to have to give us the news. Still, we held onto the hope that a couple of lousy but preferable possibilities remained.

In June, just about eight months ago now, I first saw Dr K at the University of Minnesota’s ALS clinic. He concurred with Dr B’s opinion but ordered another round of blood and urine tests. He reviewed the results of my previous EMGs and MRIs and ordered another EMG. This was conducted by a neurologist at the U of M who does nothing but perform these tests, and in his report to Dr K he agreed with earlier assessments and concluded that the “most likely cause [of abnormalities discovered by the tests] is motor neuron disease [ALS].” Bummer.

So before going on a family vacation to Hawaii in July, first, second, and third opinions all pointed to ALS. I was assured by Dr K that my progression was slow, that I did not show enough progression to meet the technical criteria2 for a formal diagnosis, but that he “suspected” and “expected” ALS.

After returning from Hawaii, I was informed that Dr K wanted me to see him for my “neuropathy” at his regular clinic rather than at the University. At the time I interpreted this in the most favorable light possible (“he doesn’t think I have ALS!”), but when I saw him I understood that he hadn’t changed his opinion. It was just that my symptoms were still relatively minor, and I did not need the full services of the ALS clinic.

Now, seven months after my previous test, a new EMG shows electro-physical evidence of involvement in my left leg and right arm. I now meet the formal criteria for the diagnosis of ALS. So that’s where I’m at. I’m the newest member of a club no one wants to join.

What’s Next?

Stephen HawkingIt’s hard to say. ALS varies widely from individual to individual. I’ve been assured by Dr K, by the coordinator of the University’s ALS clinic, and by what I read of the disease that my progression is slow and that in this disease the trajectory of progression tends to stay constant. Slower-than-average onset usually indicates a slower-than-average course. My progression has not been wildly and abnormally slow as this disease goes, but is definitely on the slow side.

What does this really mean?

Most references, including the ALS Association say that the life expectancy for ALS patients is about two to five years from diagnosis, and that about half of ALS patients live as long as five years after diagnosis. About one in ten live ten years or longer. My age at inception, overall good health, “limb onset,” and slow progression are all predictors of a longer-than-average survival.

In the 18 months or so since I noticed my first symptom, things have changed, but slowly. I’m not doing everything I used to do (my lunchtime basketball career ended a year ago, and I ended the last of my 15 seasons of MCO softball in August). There are other things I’m still doing, just not as well. I type with some difficulty now, and though my volleyball days are numbered and I’m playing more poorly than ever, I did play just three nights ago. But for the most part, and day-to-day, unless you are looking for changes they are hard to see.

I plan to be around for awhile yet, and I plan to live as well as I can while I’m here. I may not be playing basketball, but I won’t be watching re-runs on television and waiting to die either. I’ll continue to pursue the interests I can, and develop new ones to replace the ones I can’t. Changes will continue to come, and they won’t always be unnoticeable. But I’ll prepare for them as best I can, and meet each challenge I face with all that I have.

I’ll have much more to say later. Of course I will, right?

Recent ALS Bites:
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07/18/2016 Scopolamine Blues
03/06/2016 Dragon Me Down
02/12/2016 Five Years In

   or see the  Complete ALS Bites

Notes:

  1. I think Groucho Marx said this first.
  2. For the technical criteria for the diagnosis of ALS, called the El Escorial Criteria see this page.