“Are you afraid of falling?”
The neurological specialist nodded thoughtfully and I redirected my thoughts to reflect on how “Stephen Hawking” fell a lot in the beginning of the movie The Theory of Everything.
The reason for this rant is how I went to the dreaded appointment with an ALS specialist because I received neurological genetic test results saying I was predisposed to get ALS or FTD or seizures (✅ already got those/ahead of the game) or
a fun mix of each of those incurable diseases.
And the most pointed question the neurologist asked me was about my tendency to fall.
This is because… the freaky thing about ALS is how it often gets diagnosed after a person just starts falling all the time.
In an “all of a sudden” way. One day your legs are working and the next thing you know they aren’t.
You could be bowling and your legs just stop working.
What a dick thing for your legs to do.
So my appointment with this neurologist was not like any other I’ve had.
And I’ve had a lot.
But with this particular neurologist, I felt a large part of his job was to calm down people.
Keep in mind there is no treatment or cure for ALS so… there isn’t a lot for someone in his position to say but “WHO KNOWS THOUGH! Maybe you won’t get it! You’re not falling or anything… yet. Science can be wrong! We doctors can’t know everything!” Or, in short:
However, since I was unearthly calm, the beleaguered neurologist realized he could change his approach.
And then he relaxed.
He relaxed so much he ended sentences with “no lie”
“(Scientific fact)… no lie. (More about scientific fact)… no lie!”
and he also said “shit” once.
I liked him.
The Main Takeaway
If I start falling down a lot, it’s curtains. I’ll have to finally create my funeral party dance mix.
Also, if I give up, it’s curtains. That was the major point he emphasized: DON’T GIVE UP.
Apparently, degenerative diseases can activate and wake if they sense despair.
The researcher emphasized how, if I had family
(I don’t have living parents or siblings but he was very careful about not wanting to know any more about me than he needed to know or else his role would really morph into full blown counselor and he’d possibly have to answer questions like “Do you think should I tell my brother? He has depressive episodes”),
I should assess what kind of personality each family member has before I tell them about our shit genes.
Because some people don’t handle the news well.
Because, though being predisposed is not necessarily a death knoll… it’s definitely not good news… and apparently some people just jump the death gun.
This whole situation is largely one big giant psychological test.
In any case, next is an EMG test (they poke me with needles and check my brain waves to ensure my brain is registering the movement).
At this time, I am choosing to do only that test and choosing to NOT do the day-long memory test because… man, I work really hard to forget stuff.
It’s a coping mechanism.
I don’t feel like spending an entire day in a clinical setting, answering questions to determine my cognitive benchmark.
And, as my fun ALS specialist said, trying to establish a person’s cognitive benchmark is difficult because, well, as he said:
“Show me a normal person.”
And some people’s brains are simply less active than other people’s (nice way of saying it).
And assessing people’s cognitive function after a year of pandemic quarantine and all the damage it has caused…
yeesh. That’s tricky.
So the bar is probably set pretty low. Yet, there is something about being in a clinical setting and answering a bunch of questions which makes me… feel stressed.
Last year I was told my brain produced an “excessive” amount of electricity. It freaked out one neurologist so much I had to get a new neurologist.
So being in a clinical setting
may be just what I don’t need/need as it may finally drive me to unleash all that freaky electricity and finally get the opportunity to scream-sing that old Kylie Minogue song
while doing the dance.
I’d likely get a referral to yet another doctor if I pulled that stunt.
Or an agent if pulled that stunt really well.
The Bright Side
The ALS specialist also said that there is a medication
that literally STOPS ALS symptoms from developing for three months.
So, in a way, you’d get a summer vacation before you die.
In such a situation, you’d crowdfund your ALS diagnosis for all it’s worth and get the money to book an AMAZING holiday where you’ll often feel so happy you could die.
And then die.
And that’s more than most of us will get.
However, I’m not exhibiting symptoms and I have no interest in taking another medication because my epilepsy medication is already, apparently, killing me.
In his casual way, the neurologist said:
“This medication (Riluzole) is not nearly as hard on your body as what you’re already taking.”
Specifically, epilepsy medication is apparently, according to this practitioner, the most toxic med a human can ingest.
Since I’ve been taking this shit since I was 12, and since my internal organs still haven’t failed…
that’s a great sign, he said.
Yet, when leaving the neurologist’s office, it was very clear to me that, if my brain doesn’t kill me, the brain medication will.
Or I could be shot tomorrow by someone who was aiming at someone else.
Or at me because the color blue.
None of us know what today will bring. Watch enough True Crime and you’ll get a better sense of the random, chaotic and unfair way of life.
In any case, stressing out about when we will die, how we will die, why we will die… is mostly a waste of energy.
Besides, I’m 41 years old. I’m not 19.
I’m old. I’ve had a good run. If I’m going start falling down, I’ll get the medication and have the best holiday of my life.
In the meantime, I’ll keep writing my memoir and trying to find a job in a pandemic.
What else is there to do. 🖤
Bright Side to Close
Happily, there is a bright side beyond philosophical perspective.
The neurological specialist also reiterated what I’ve been saying and that’s how he expects to have a treatment for ALS within five years.
Genetics research is booming right now.
About fucking time too.
So if idiot people don’t start World War III or the earth doesn’t become inhabitable due to climate change…
there is hope.
Of course, there’s always hope. 🖤
Except on the bad days. Sunday nights especially (for me, personally… for some reason).
But… we all just have to
… and find a way to set up a really awesome camp site on the edge of the cliff we are all teetering on and live while we have the chance.
9 thoughts on “Brain Update: To Fall or Not to Fall”
There is some teetering going on,
As far as baselines, this blog is one.
As usual, your blog leaves me a little speechless. All I can over is an online hug.
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Hugs to you dear G. We will see! 🖤
We are seriously researching cures at this end too as it is all getting out of hand, though not with as much pizazz as your description of what is happening there!. I think you just invented a new genre of comic books by the way – I just love the tent on the edge of the cliff……………Hugs, Jenny and co
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Oh how I miss you. Sending so much love. Hahah I’m getting more to how I used to make comics as a kid. 🖤 Love love love love love. Fingers crossed!
Are we going to talk about how Kylie’s video features headwear a la handmaid’s tail AND covid “face shields” tho?
It’s fine if we don’t.
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Hahahaha we can… it’s a crazy video but one I loved long long long ago. Now, as an old person, it is VERY SEXUAL. 😂 Like… DAMN, Kylie, stop groping yourself! (I’m officially old and ornery 😂)
I do love the video though. And it does feel prophetic with the head gear and face shields. And she always reminded me of a vampire somehow.
But of course she does. #vampirestateofmind😂
And, may I just point out that she looks a bit like you?
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Hahahaha well that’s an amazing compliment I will happily take dear Lisa. 😂 Maybe in my youth. She always reminded me of a vampire in this video and… well, there is that connection too. 😂 and the overbite.
Gak! And LOVE YOU TOOOOO, B! 😘😘😘😘😘😘😘😘😘😘 I didn’t say that in my rant response. Silly rabbit. 😂😘😘😘😘😘😘