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.

WTF

"I think we're dealing with ALS."


My neurologist's words hit me like a roundhouse kick to the face.  Over the last few months I've seen three different neurologists for the strange, and still subtle symptoms I've been experiencing.  I've been stuck with needles, shocked, poked, and prodded.  I was sitting in an exam room in the Forbes Norris ALS Research and Treatment Center and I had just seen what happened when the doctor tested my patellar reflex.  In retrospect, my reaction should have been more like Michael's:



Amyotropic lateral sclerosis (ALS), is an incurable, and inevitably fatal, disease of the body's motor neurons.  It was first identified (diagnosed) almost 150 years ago, and it's mechanics remain a mystery to medical science.  Its cause is unknown, the mechanism in which motor neurons are killed is unknown, and its cure is unknown.  It strikes virtually at random, though is most common in people over 40.  The only treatment is a drug, Rilutek, which twenty years ago was discovered to slow the disease progression down by about 10%.  It remains the only medically recognized treatment for the disease.   The disease is progressive meaning it will spread through my body,  each part gradually growing weaker until, ultimately becoming completely paralyzed.  Hands, arms, legs, face, torso, everything, one at a time.  A progression to zero.  Mercifully (or not, depending on your point of view) your mind remains unaffected in most cases.  Eventually I won't be able to eat or breath without medical intervention.

My first sign something was wrong came over a year ago.  I started getting strange "twitches" (fasciculations are what doctors call them) in my upper body.  On googleing this, ALS came up, but it rarely is a first symptom of ALS (6% or so of cases), and lacking any other symptoms I figured the twitches were benign. In December I started slurring my speech and I went to the doctor.  With no know cause or mechanism, ALS is a clinical diagnosis, meaning you look for signs and patterns rather than diagnostic tests to determine if you have the disease.  As each test they did on me came back normal, ALS grew more and more likely.  I've never wanted to see an abnormal blood test before.

Currently my symptoms are mild, a bit of a speech impediment, a tendency to tire easily, some weakness in my right hand.  I still twitch all the time and I have a tendency to laugh, or cry too easily.  Its very early on, and the progression seems slow so far.  The disease is highly variable in it's progression, no two people go through it in the same was, and it can speed up or slow down at any time.  I don't feel sick, I don't look sick. I wonder if the doctor got it wrong, then I try to talk, or I have trouble getting something out of my pocket, or I slip on the stairs.  I worry that all this is going to affect those around me, that it's going to be harder on them than it is on me.  Stephanie and the boys the ones who will have to pick up the slack when I can't, and take care of me as I loose the ability to take care of myself.  Luckily we've got great family and friends, who are supporting us in whatever way they can and that means a lot.  Having good people in your life makes everything easier.

My current intention is to write about my experiences here, so subscribe to the feed if you'd like to.  I don't know how consistent I'll be,  I'm playing this whole thing by ear.