the luckiest of the unlucky. part 1


As the odds would have it, it appears I am lucky.  I mean, 2 in every 100,000 come on.  If only this was the lottery I was talking about.  Unfortunately this is not the case, 2 in every 100,000 people have ALS.  However, I AM one of the lucky ones.  I’ve been blessed with a tremendous support team, a loving wife, 2 amazing dogs, supportive jobs, a house. I can’t even begin to count the reasons for which I am blessed, lucky and grateful. I can’t even imagine what the ALS diagnosis looks like without health insurance or a loving partner, or family to lean on, but i know for many, this is reality.

My case may be a little different then most with Lou Gehrig’s disease.  I was fortunate to have friends in “important places.”  A year ago, I noticed cramping in my left hand.  As usual, I chalked that up to dehydration.  I’m invincible.  I’ll just drink 100 ounces of water a day.  And I did.  All winter.  Peeing my brains out for 6 months straight.  It was April now, my wife and I had returned from the most amazing trip of my life to Italy.  (Will post about that later). I decided it was time to hit the gym and burn off those pasta carbs.  I began working out, but something was off.  I couldn’t do the pull ups I used to be able to do, the push ups were more difficult.  What I was noticing was a weakening in my left arm.  Now, I’m fully aware of muscle loss from not working out.  I get that, however not a year and a half before this, I was a crossfitter, capable of doing things with my body I never knew possible, including 100’s of push ups and pull ups and burpees.  This was strange.  Upon further inspection of my left arm, I noticed twitching in my bicep muscle, shoulder and forearm. The twitches were light, only noticeable by looking at my left arm, I couldn’t necessarily feel them.  But again, this was strange.  I called my pcp for a referral to a neurologist in May, while very nice and helpful, I was told I could have an appointment in August.  Yes, August. That was almost 4 months away, just to get a referral.  This was frustrating. Who knows how long it would be for the neurologist appointment.  Here’s where my luck comes into play.
As a nursery school teacher at a cooperative nursery school, we get the pleasure of parent helpers in the classroom with us.  It just so happens that the following day our parent helper was a neurologist at the Lahey Clinic in Burlington, MA.  After a quick conversation on the playground about my predicament with my pcp and a few arm tests, she asked me if I would be willing to go to the Lahey Clinic.  I said of course. A week later I had an appointment with the head neurologist.  He saw me in the evening.  It was June at this point.  We ran through some office tests, and had some conversation.  Nothing to be concerned about as far as I knew.  We scheduled some blood work, an EMG, and an MRI.  All pretty standard I guessed.  At this point, I was convinced I had Parkinson’s disease or Lyme disease.  So I went through all the testing.  I’ll go over the details specifically later on but for now, let’s say the EMG was…. Well not pleasant, and I didn’t know I was claustrophobic until I had an MRI.

Flash forward to July 6, 2016.  I received a call from my doctor saying all the tests were in and he would love to see me again in the office.  And this time he would love to meet my wife as well.  This was interesting and I asked him if “I was in danger,” not sure why I said danger but it really caught me off guard.  We made the appointment for the following afternoon.  July 7th, 2016.  The day I would find out I have ALS.

Author: adventureoflivingblog

My name is T. For now I'll remain anonymous. I'm not really sure why, but it feels right. In July I was diagnosed with ALS. Faced with the choice, "Life or Death," I've chosen to live. But not just to live, but to really LIVE. This is my Adventure.

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