KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
If you translate "Myasthenia Gravis" you get something roughly along the lines of "heavy weakness."
This is a recent diagnosis for me, so I don't know where on the spectrum I will eventually fall, but the effects can range from limited to visual (drooping eyelids, double vision) to other aspects of the head (trouble swallowing and difficulty with word formation) to much more serious symptoms (difficulty breathing, problems lifting limbs, etc.)
As of the time I'm writing this (a week before posting this piece), my symptoms are limited to visual (fairly constant) and swallowing and speech (intermittent and fleeting).
I so hope they will stay that way.
Currently, I can function relatively well, with the aid of tape to keep my eyelids from falling shut. Some days I only need to tape the left eye. Others I need to tape both. This produces some irritation in the left eye-- foreign objects more easily fall into the eye when I'm not blinking as frequently so eyedrops are a constant companion.
I have to bring the tape with me everywhere as well-- if I find my right eye starting to droop, I have to stop and tape it up. It looks a little ridiculous, but it does work-- when the eyes are taped, the double vision is rare and short-lived, hardly causing a problem at all. An inconvenience, but so much better than the alternative, which is walking around like this:
It's strange having visible notice to others of what's going on internally-- if people ask, I explain it, but if they don't, I don't tend to say anything. I'm talking considerably more about this syndrome than I would prefer to, but it's important that people around me know what's going on, especially given the (unlikely) potential for respiratory issues. Fortunately, I work within a short distance of one hospital and live near another, so should I face an emergency, I've got an extremely good likelihood of being able to receive help quickly.
But, really-- I'm just still a bit unable to quite accept that it's so important that I know where all the nearby hospitals are.
In the meantime, I should clarify what this is. Myasthenia Gravis occurs, for the most part (and this is the case with me) when the body's own defense mechanisms (white blood cells) create antibodies against acetylcholine. What's acetylcholine? It's an important neurotransmitter. You don't need much of it and it doesn't need to be there for long, but it's a crucial step in the communication between the motor cortex of the brain and the muscles themselves. Put more simply: the brain works fine. The muscles work fine. But the signal between them is weakened, like having an short in a wire from your music player to the speakers. Sometimes it works fine, but other times it starts to fizzle out, especially when overheated.
So what does all this mean? It could mean that my life as I understand it is, in its own way, entirely over. It could mean that I'll reach a point where I can't move around easily on my own. That's not the likely result, but it's a possibility. This is, essentially, incurable. Treatments vary considerably. In some of the more extreme cases, they remove your white blood cells and replace them with a solution that does not contain the antibodies. There is also a treatment to remove the thymus, a gland that rests below the breastplate that generates these antibodies. It works as a long-term treatment for about 50% of the people who undergo that surgery, but it's only considered useful in a portion of the cases.
The drug I've just started is called Mestinon. (It's also, by the way, used to treat exposure to some types of nerve gas). It's an a acetylcholinesterase inhibitor.
I should explain this.
So-- neurotransmitters need to only occur for a brief period. We have built into our nervous system the creation of and the removal of neurotransmitters. Any chemicals which end with "-erase" are intended to break down a specific chemical. Therefore, acetylcholinesterase destroys acetylcholine after its no longer necessary.
Except that I already have a mechanism destroying the acetylcholine, so we're introducing a new drug into my system intended to interfere with the acetylcholinesterase, leaving more acetylcholine available for neurological use.
The balance is tricky here-- too much acetylcholine can cause problems, just as too little can. So the trick is to slowly increase the dose to the point where my eyes can open on their own without hassle, and where the double vision disappears. If I'm fortunate, that will happen soon. If not, well, we'll cross that bridge when we come to it.
A lot of what I read in the KosAbility series tends to be much more long term and severe than my own experience here-- this is more about theory to me at this point. What we know is that in most cases, the shape of the disease is fairly clear after the first three years. I.e., if I don't start to develop any more serious symptoms soon, I'm unlikely to develop them later in life.
There's little I can do to change this-- I can take meds to treat it, look at my nutrition (I've started taking some supplements and am looking at my diet to see if there's more I can do, but those options are unpredictable and even if they help, I might not be able to distinguish between them and the Mestinon).
For now, I can still take photos.
And I play:
And I animate:
So today, I write this, and hope. Hope I'm feeling better, hope I can see clearly in a consistent and vivid fashion. Hell, just hope I get to go on a whale watch sometime soon.
I really miss the ocean.