Hypokalemic periodic paralysis was going to be discussed sooner or later. The attack on Friday was a pretty good one, so now is the time to talk about my PP (my periodic paralysis). Things might get vulgar; they will get weird.
What is periodic paralysis? Have some details on the Wikipedia entry https://en.wikipedia.org/wiki/Hypokalemic_periodic_paralysis
Image from Medscape.com showing some known mutations
tl;dr - PP is a rare genetic disorder leading to attacks of muscles temporarily being non-responsive. There is no cure, management can be tricky, death can occur if respiratory muscles go out, and most people can manage it well enough to have a normal lifespan.
Before age 30, my attacks occurred a few times per year. Full paralysis would last about 20 minutes to an hour, and nearly complete recovery followed immediately. As is common for people with periodic paralysis, things changed as age 40 became visible on the horizon. Attack frequency shifted from a few times per year, to a few times per month, to a few times per week, to daily. Duration was counted in weeks instead of minutes. Severity generally lightened - no longer leaving me completely paralyzed. It was a mostly gradual transition that allowed me to easily acclimate to my new reality. Then, there was a HUGE shift in symptoms.
At the end of June in 2017, 'walking' packed its bags, silently loaded them into the car, and told me it was going to get cigarettes. Instead of occasionally using crutches for assistance, they became a mandatory accessory... for a couple of months. Shoulder movement soon decided that I was also an incompatible partner and left me (probably to join up with walking, that cheap slut). Having endured so much "toughness conditioning", I did what I always do. I pushed on. If one arm is the only thing working, then I will learn to drag my body around on one crutch. It seemed tenable back when at least one arm would still work.
By November, the floor was one of my best friends. We spent a great deal of time together, and it was just time. No long walks on the beach, witty banter, or crazy activities were required. How could they be? This new stage meant losing all leg function above the knee, all arm function above the wrist, the strength to hold my head upright, the capability of speech, and the ability to breathe without effort. Also, the floor seemed to just want to stay home all the time. It wasn't exactly a comfortable relationship, but neither of us knew what else to do. We both knew it was over, but it was up to me to take the first steps.
In December, a metabolic specialist in the area agreed to meet with me and attempt to solve the mystery the previous dozen or so doctors were unable to solve. Remember, at this time, I still had no idea what was happening to me. Insanity of some sort was still legitimately on the table as I laid on the floor each day wondering if I would live long enough to even consider being able to walk again. Given the symptoms, the new guy figured Hypokalemic Periodic Paralysis was to blame.
Potassium, the saviour
Metabolic specialists cover a decently wide range of rare disorders, but they don't necessarily specialize in any one of them. Not surprisingly, the nerd that couldn't move quickly absorbed just about every morsel of knowledge available on the topic of hypokalemic periodic paralysis. Utilizing some extended release potassium ended the constant cycle of attacks. Triggers became obvious, and I was walking, talking, and breathing like a normie most of the time. Severe attacks require straight potassium chloride, and they end within about 20 minutes. But attacks aren't the only downside, the after effects can last for days.
Once the paralysis has finished, muscles that had been overworked or overstretched can cramp violently for a day or two. There may be a component of the disorder that leads directly to my cognitive impairment during that 24-48 hours, but the lack of sleep from bed moshing all night would probably do it all by itself. These are the times when I disappear from the Internet. Communication is just too difficult to even attempt. Pretty sure the dog has a better vocabulary. Things that have been comfortable for the past twenty years are suddenly too difficult for me to accomplish. Server administration is out, website design is out, website coding is out - my absolute expert knowledge of relational database engineering disappears like that dream about... what was that about again?
Life is still nowhere near where it was a few years ago. Maybe it will all come back together, or maybe I will just have to learn to manage things this way as best I can. Currently, that means avoiding carb-rich meals, temperature changes, getting tired, getting hungry, exercising more than a tiny amount, sitting still too long, or feeling stressed. Easy enough.
Will it kill me? No. Fuck no. Double fuck no. My son is five years old. 100% guaranteed he has the same genetic mutation. No way in hell does he go it alone. No way does he face the same volume of violence, confusion, and self-doubt over this.
Does it suck? Yeah. It really does, but it isn't a choice I made. The choice I'm making is to rock and rock hard. I will find my rhythm, and y'all better lookout when it happens - I have things to do.
