The Terrible Twenties

Funny enough, in retrospect the Terrible Twenties are somewhat like the Terrible Twos – there is that feeling of being invincible, but now with money and without supervision. Good times.

And while I had a ton of fun in both my twos and my twenties, you may be disappointed to find out I’m referencing neither here.

No, unfortunately, these Terrible Twenties are about something much more problematic than an over-stimulated two-year-old or an overbearing twenty-something. 🙂

Last week was the Q1 2023 installment of that quarterly get together with my Multidisciplinary Care Team, also known as ALS Clinic. As you may recall, I meet with a team that handles a variety of medical disciplines, from Neurology to Respiratory to OT/PT/Speech and others. This visit, I was primarily focused on the Pulmonary/Respiratory testing, and, of course, my overall progress meeting with the Neurologist.

Anyway, the reason I was so focused on the Pulmonary/Respiratory testing for this Clinic was that I was disappointed in my performance last time. I have to be honest, I’m really not accustomed to performing poorly on tests. Acing tests was the only way I actually graduated from high school (still sorry about that whole “curve” thing guys). 🙂

Breathing-related issues are obviously critically important in the ALS world, as respiratory failure is ultimately a primary cause of death for a majority of folks afflicted with ALS. At Clinic, I meet with a P/R team (as in Pulmonary/Respiratory, not Press Release – I abbreviated trying to save typing strength here, which, by explaining, I failed to do, but whatever). 🙂 The P/R team tests and tracks this metric called Vital Capacity (VC). While I am still waiting for my Pulmonologist certificate (which will go nicely with the Neurologist cert I got a while back), I can provide a rudimentary understanding of VC.

It’s about Capacity… and it’s Vital. There you go. OK, sorry, attempts at humor are a coping mechanism for me. 🙂

The way I understand it, Vital Capacity is a calculation of the capacity/function of your lungs – forced expiratory volume, maximum inspiratory pressure, and a bunch of other details. This is done through a series of multiple inhale/exhale tests. These tests are seriously no fun. As in zero. ALS patients already experience breathing challenges as the thoracic muscles and diaphragm weaken and atrophy due to the disease progression, and, from a personal perspective, it seems these tests are meant to push the limits to see what your body can tolerate.

VC scores range from 0 to 100 (while zero is obviously not optimal – actually anything under 50 starts to be of concern). These numbers are a reflection of my score from the breathing tests, as compared to those of a normal, healthy person of the same general physical characteristics.

Over the first 16 months after my initial diagnosis, my VC numbers were strong, consistently over 90-95% – so everything was hunky-dory (sorry, medical jargon). 🙂 But something quirky happened at my Q4 ‘22 Clinic, as my scores dropped into the high 70s.

Note: if we were talking about my golf game here, I’d be ecstatic – but a double-digit drop in my VC score felt like a quintuple bogey (not that I’ve ever had one of those, I’m just guessing what one would be like). 🙂

I was certain the test score had to be an anomaly. A random outlier. A fluke. And candidly, despite how much I may loathe the VC test process, I was looking forward to a big rebound at this Clinic visit. I prepared myself mentally and physically for the rematch. I was ready.

The result… another double-digit percentage drop, with the updated scores dropping into the 60’s. Not at all what I was looking for from something so, um, vital. Damn.

At least I still had my Acronym soup scoring, the ALSFRS-R, that could save the day. You may recall, the ALSFRS-R tests patient functionality across a broad spectrum of normal daily tasks. The scoring is broken into 12 categories, with each scoring 0 to 4, for a maximum total of 48 for you healthy folks.

While I had slipped into the 30s over the last couple of clinic visits, I was relieved that my overall progression seemed relatively slow. I was hoping for another thirty-something score – anything to keep me out of the Terrible Twenties.

No such luck.

Twenty-eight and a half. 28½. XXVIII(hmmm, no idea how to half in Roman numerals). Regardless, no matter how I stated it, it sucked… big time.

My October score was 35.5. That’s a seven point drop in five months. 20%. Twenty freaking percent. That’s, well, um, shall we say, unfortunate. (This is obviously the censored version of what I really think about it).

It’s also depressing. It’s demoralizing. But it’s fact, and there’s really nothing I can do about it. Well, nothing physically. There’s no magic wand to slow this thing down. It’s progressive. There’s no magic drug to cure it. It’s terminal. It is what it is. So it goes.

But as I’ve said over and over and over again, and will continue to say until I am blue in the face… attitude is everything – and that is something I can control.

These test results? That VC score in the 60s? That ALS score in the 20s? They’re only numbers. Screw the numbers. They don’t track or calculate or quantify the things that really matter to me – my attitude, my faith, or the incredible love and support I have from people who care.

Those beautiful intangibles. Based on a scale of 0 to 100, I’m self-scoring my number there at 306,612,118, give or take a few. 🙂

Will that intangible score bring up my VC score? Nope. Will it raise my ALSFRS-R score? Nada. But I don’t care. I am determined to focus on what I can control.

And I’m gonna fall back on my original mantra. This disease will steal almost everything from me, but I will never, ever, ever allow it to take my Faith, my Fight, my Hope, or my Love.

Here’s to the Terrible Twenties, may they be some of the best days of my life.

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