Clinic

Thought for the day:  Things stay pretty much the same, until they don't.


I know, it sounds awfully simple, bit it's actually an old thought that's been bumping around my head for a while.  Stephanie and I were on vacation in Thailand and we were sitting down for breakfast at the resort.  We'd been there a couple days and had a couple more to go before moving on to our next destination.  Though the days were filled with different adventures, there was a certain rhythm to things... you went to breakfast at roughly the same time each day where you tended to see the same people, and picked from the same food offerings then you were off for some adventures and were back in the evening drinking Changs

while reliving the days events.  I was so far from home, yet we had so naturally slipped into a routine, it's simply the way humans operate.  Looking at all this and thinking about it I came up with the key observation: since almost everyone was staying at the resort for multiple days, you could pretty much predict who would be at breakfast in the morning and drinking beers in the evening tomorrow by who was there today.  You'd predict wrong eventually, but correctly most of the time.  Once someone checked out of the hotel, however, they'd be gone and you'd almost certainly never see them again.  Things stayed pretty much the same, until they didn't.  Life, it seemed to me, is a lot like that in many ways.  Things stay pretty much the same until they don't.  There are a lot of events like the hotel checkout that stop the old routines forever and we rarely look back.... marriages, births of children, graduations,  kids starting college.

June 24th was my first "Clinic" appointment.  The Forbes Norris ALS Clinc runs monthly and is an "integrated" clinic caring for ALS patients.  The "integrated" part means you can meet with any sort of care specialist that you might need help from:  doctors, physical therapists, speech therapists, nurses, social workers, the whole gamut.  Being a new patient, and still fairly well off, most of my appointments were to baseline where I was at as a reference for the future.  One of the items they ran me through was the revised ALS Functional Rating Scale (ALSFRS-R) which ranks how you're doing from 48 (normal) to 0.  I scored a 45, which I'll take, given over a year of symptoms.  I think being athletic may have skewed the baselines somewhat... one of the ALSFRS questions asked if I get out of breath easily now.  As someone who gets himself out of breath as a hobby, I had to ask what he meant... like more easily in the middle of an expert level mountain bike race (yes) or climbing up a flight of stairs (no).   All things are relative, but the question was really asking the latter as it's scaled against a more generalized "normal".

My last appointment of the day was with my Neurologist, Dr. Katz.  I like Dr. Katz even though he's the guy who gave me the worst news of my life.  I think a lot of people have a hard time separating the person from the diagnosis and neurologists take the hit.  It must be a fairly grim job as ALS is the most common motor neuron disease and they can basically do nothing for it.  The doctor talked to me and Stephanie a while, and the topic turned to cycling.   I mentioned that we're going to be doing the ALS Association's "Ride to defeat ALS" and he said that the he and the clinic staff all do the ride every year. He tried to talk us into doing the shorter 62 mile ride, not for any medical reason, but so he'd be able to do the ride with us.  I told him that we might be finishing up our 100 at the same time as the slower 62 mile riders are finishing, I'm not sure he believed me but we'll see. :)

It's funny, you get a diagnosis like this and you first think about all the things in life yet to do.  You want to be sure to squeeze everything you can out of every minute.  The more I've thought about it the more I realized I'm already pretty much doing that.  You just can't live every single day like it's your last... the garbage still needs emptying, the kitchen still needs to be finished, the kids still need to go to school.  It's what you do above and beyond all that stuff that makes the difference and I really like what I've been doing.  Adjustments need to be made but everything still goes on pretty much like it has been until it doesn't, and not a moment sooner.