Not long ago, I was diagnosed with a “terminal neurodegenerative disease.” They’re calling it ALS (Amyotrophic Lateral Sclerosis), commonly known as “Lou Gehrig’s disease.” ALS is what Stephen Hawking had. However, ALS remains an umbrella term for a number of diseases that are not understood and have no cure.
In my case, it’s “Bulbar ALS,” a term used to denote the form of the disease that’s characterized by difficulty speaking and swallowing. I haven’t been able to talk for months and swallowing is very difficult. The good thing is that my mind remains clear. Of course, the stress is there but still … I joke about living in the State of Denial.
Re-reading this, I realize that I forgot to mention how I came to have this condition. In my case, it was caused by trauma, fainting and falling and hitting my head really hard. It all started when I woke up one morning, looked at the clock and realized I’d overslept. Since I wanted to be with my Sweetie (husband) at least a few minutes before he went to work, I jumped out of bed. Or, at least, I tried to. I have low blood pressure. Having been prone for 8+ hours meant it was even lower. So, I fainted. I did get to be with my Sweetie, though, while he rushed me to the Emergency Room and got my ear sewn up (I’d hit it on the bedside table when I fainted).
Every time I’ve looked at the Wikipedia article on ALS, there’s added detail and that’s even truer today. The article is *much* longer and far more detailed. ALS - Amyotrophic Lateral Sclerosis
I’m more fortunate than many because I have the most wonderful husband in the world who doesn’t try to “baby” me but somehow seems to know when I want just a bit of assistance (and that’s becoming more frequent). That’s especially remarkable when you consider that I’m unable to talk so he’s having to read my mind and assorted weak hand gestures.
That “State of Denial” I mentioned? As long as I keep my mind occupied via reading (all politics, all online, 10-12 hours/day) and playing LinCity (Linux version of SimCity), I’m fine and forget about what’s happening to me. Occasionally, however, there’s the mental equivalent of a tap on my shoulder and a nasty voice named “Reality” whispers “you’re dying.”
One of the worst things about it all is the uncertainty, the unknown. The disease’s name sake, Lou Gherig, lived approx. 2 years from diagnosis. I was diagnosed in August, 2019. The fellow who invented the Ice Bucket Challenge to raise money for research on ALS just died after 7 years with it.
Difficulties with chewing and swallowing have made eating gradually more and more difficult and now nearly impossible. I can get a small amount of clear fluid down. In August of this year, I weighed 164. Three weeks ago, I weighed 121. Yesterday, I weighed 102. I’m starving to death.
Although respiratory support can ease problems with breathing and prolong survival, it does not affect the progression of ALS. Most people with ALS die between two and four years after the diagnosis.[4] Around half of people with ALS die within 30 months of their symptoms beginning, and about 20% of people with ALS live between five and 10 years after symptoms begin.[3] Guitarist Jason Becker has lived since 1989 with the disorder, while cosmologist Stephen Hawking lived for 55 more years following his diagnosis, but they are considered (very) unusual cases...[48]
Now I have to decide when to publish this (writing begun on October 5, 2020). I can’t bear the idea of people feeling sorry for me but I do want people to know why I disappeared before I actually do. My duties as Admin for various groups need to be assumed by others. I’m also all too well aware that when people know you have something as serious as this you suddenly become nothing more than an exemplar of the disease. Being “Ms. ALS” does not appeal to me.
On 11/24/2020, I will have a feeding tube inserted. Oh, joy.
Randy is a short form of my middle name and I’ve been called that all my life (goes well with my sister’s name).
P.S. I’ll continue to post occasionally, of course.
Thank you all for your love and kind words! It’s far more than I expected! Please know that I feel much the same way about you all!