Acronym Soup for the Soul 2/3

The other day I talked about the ALS Clinic and the ALSFRS-R score, and how I attend this clinic every three months and spend several hours with a team of experts in different fields all related to the management of ALS.

So what the heck do all these people do? I’m glad you asked. 🙂 Let’s go to Clinic.

Recall the group includes: a neurologist, a respiratory person, and a pulmonologist. As well as a physical therapist, an occupational therapist, a nutritionist, a speech therapist, and a palliative care person.

To my frustration, I often draw the hardest and most taxing portion of the clinic right off the bat – the respiratory tests. I have to do these deep inhale/exhale tests. It sounds so easy when I explain it, but they are a real pain in the, well, chest. Like them or not, these tests are critical, as they assist in prognosis related to my ability to breathe – and, as I learned in pre-med, breathing is really helpful for continued living. 🙂

Actually, on a serious note, the respiratory/pulmonary testing is so important because a vast majority of ALS patients die of respiratory failure. For some crazy reason, the muscles that work your lungs are voluntary, so when your brain/nervous system stops telling them to function, they don’t just function on their own, they just stop working – No Bueno.

So far, after five clinics (about 14 months of time) my respiratory numbers are still adequate. I’ve been advised not to try and hold my breath underwater for more than 30 minutes, but aside from that, I’m good for now.

During my Clinic visits, I see the other specialists in no particular order. They include:

Nutritionist. This visit is always kind of awkward. As she discusses healthy eating habits, I’m guilt-ridden, thinking of the large pizza and multiple beers I downed the night before. Honestly, discussion points on nutrition with ALS are all over the place. Yes, we should eat better. That should happen even if you aren’t terminally ill, as I’m sure it will be good for you later in life. (Not really practicing what I’m preaching here, deal with it). 🙂

But I maintain two thoughts on this.

First, almost every ALS patient, (like 90%+,) ends up with a feeding tube. Fun! (NOT). This is necessary because our eating process becomes dysfunctional as we lose our ability to chew and swallow. Pizza and beer (or, yes, even healthier foods, if that’s your thing) could go down the wrong body tube, cutting off oxygen, and my understanding is that asphyxiation is bad (again, pre-med thing). 🙂

As I think about the functionality of this feeding tube, I don’t see how I’m going to shove a large slice of meat pizza into that thing (although I’m definitely thinking the beer is doable?). So if a tube is a requirement for me at some point down the road, I can assure you that for as long as I can I’m going to enjoy all the bad things that I’ll be forced to give up then. Sue me.

And second, early on in this journey, I read a report (on the Internet, so it had to be true) that ALS patients with higher BMI percentages tend to live longer. That’s all I needed to hear. I’m going to celebrate my big ole BMI for all it’s worth. Seconds? Sure!

Next up, an occupational therapist… or physical therapist… or, actually, both. I have to be honest, I don’t know the difference. I mean, I’m physical when I’m occupating, and vice versa, so… Oh well. They track and test movement and motion. We talk about muscles. We go over exercises I may try to help alleviate any pain I may be having. We talk about how to compensate for any losses I may be having in function. It’s all good clean fun.

“Peanut Butter, Peanut Butter, Peanut Butter. Baseball Player, Baseball Player, Baseball Player.”

What? Why am I babbling? Well, come to find out, those words use all of the vocal/mouth/tongue muscles, and are a good test for how my speech is holding up. Who knew? I mean, the Speech Therapist knew, and she told me. And I told you. Now we all know. So now, if (when?) you see me aimlessly wandering around mumbling about Ken Jiffy, Jr. you’ll understand why (haha, get it? peanut butter, baseball player… c’mon, you know that was good). 🙂

And rounding out the team is the ever-popular palliative care folks. OK, that’s not really fair. She is a very nice person, and she has been nothing but supportive… it’s just that there are only so many times I can cheerfully discuss my end-of-life plans and DNR status. 🙂 Bottom line, if I need something, she is there for questions and support, and we greatly appreciate it.

After I see all the opening acts and get through the myriad of tests and questions, I see the Headliner, the Neurologist. He conducts more range and mobility tests, asks a lot of questions related to daily living, runs a bunch of muscle strength tests, and then ponders just how bad he’s going to hit my score.

Note: I’ve been assured that the Neurologist is not a betting man, so if I do implement that Over/Under line, I can be sure that he’ll still give us a legit number. 🙂

Ultimately, while the official score, the big number, that ALSFRS-R, is delivered by the Neurologist, I’m kind of a control freak, so I do a self-test number test as well. How bad will his score be? How will our scores compare? Did I miss something in my scoring, that he’s going to hit me with? There’s this prolonged moment in time, where we wait for the scoring, with the only certainty being that it will be worse than last time.

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