"Well, who wants to know?", I thought to myself as I pondered the name for this blog.
Could be a taxi driver or it could be Charon, the infamous ferryman of the mythical river Styx, waiting to take me and my soul across its dark waters.
Okay, a taxi is a familiar thing - it is a car and I have been in cars. I have also been on roads which usually have a finite beginning and ending: a destination, as it were.
I have also been on boats and on the water which carries them, but here there's a little more navigation involved - and much more danger, I think.
Never one to take the easy route, I decide on Charon and my answer to him is:
"The Elysian Fields, if you please, dark Dude. Hades if we must, but for now how about you just get me to the other side, and let's figure it out from there, okay?"
So let's leave these two travelers (one of whom knows where they're going, the other one just hoping........) for a while.
I'm Bill, and a couple of months ago I was told I have Stage II (Early Onset) Alzheimer's. If you're not familiar with the stages, stage I is no symptoms at all and Stage II is described as very mild impairment, and so forth and so on. (Are you getting the feeling that I am not ready to tell you about the other stages? You may be right .)
So the testing begins - well the testing...... there is no definitive test for Alzheimer's yet, so we're all just stabbing in the dark hoping to catch it before it progresses to the point where we can say, "Oh yeah, definitely Alzheimer's. Can't you tell? I mean look at him all droolin' and stuff. Yup, it's the ol' AD, fer sure!"
Well if I am able to articulate at that point, I might say, "Well no shit, Sherlock!" So it's when when we finally get to a stage where it's too late that we finally get the "full-blown" diagnosis, and then there's no cure, just something to help the symptoms.
So to get back to the subject: the tests begin. First an MRI of the brain, then some cognitive tests to determine my mental status.
First the MRI: Normal. No evidence of a stroke or injury. Good, so we got that out of the way.
But I have some problems with the cognitive testing. Not the "I want you to remember these three things" part, but the drawing of the figures. I cannot get them right to save my life. Also I have trouble telling my neurologist where I had the MRI done, and it was just the week before.
(This may be a good time to mention that I did not self-diagnose. I have had short-term memory loss for three years and it was steadily getting to the point where I would forget ordinary words in the middle of speaking a sentence. It was then I took the "10 Symptoms" test, and determined I was in all of to some degree.)
After the MRI discussion, my neurologist put me on Aricept 10 mg once daily. This was some bad mojo, because after it got into my system it caused me to have "dry-mouth" so bad I woke up one night unable to swallow, and as I stumbled to the fridge for water, I was convinced I had had a stroke.
I think "Dry-Mouth is too weak a description for what happened to me that night.
Try "Scare The Shit Out Of You- Mouth", and you'd be closer to the mark and the way I felt that night. I went through 8 bottles of water before my dysphagia (the correct medical term) finally let up and I could swallow normally again. It was the only way I could keep my epiglottis open.
The next day I called my doctor and he told me to stop the Aricept. I resisted the urge to "Duh" him.
Next an EEG to test for seizure activity and Parkinsons. Although I do have mild tremors, we think they are related to some other meds and not due to Parkinson's Disease.
Next another scrip. This one for Namenda, a loading dose of 5 mg for the first week (now) and then 5 in the morning and 5 in the evening and so on.
Well, what do you think happened that very first day?
That's right: STSOOYM, and here we go again with the water and the almost-panic attacks from not being able to swallow.
I can see I am in for a very interesting time with this medication, but I am willing to give it a fair try. Working in the medical field as a respiratory therapist, I am well-acquainted with patients who are non-compliant with their medications, and since a very close friend (an ER physician)told me I had better be pro-active with this, I want to do everything I can to turn this around if I can.
Elizabeth Kübler-Ross is the physician who authored On Death and Dying and The Five Stages of Grief as the phases we go through faced with our own impending death.
I jokingly told a friend I believe I went through all 5 of them the day my neurologist gave me the news he thinks I have Stage II.
So how am I taking all of this?
Well of course I'd much rather be immortal, but then I would need all my other friends and loved ones to be immortal too and I don't think they'd have as much fun with that as I would! :)
I have decided to approach this with the curiosity of a child or an explorer, and see where it leads me. I don't even have a "game plan" other than just writing down my thoughts here. But I'm avoiding that question up there, aren't I?
"How are you taking all this, Bill???"
I'm scared. At 58 with a very healthy body, I am not ready to let it all go yet. I want to be a burden to my son and grand kids, I want the opportunity to be a dirty old man and pinch ladies' butts without getting in trouble for it, just being told , "Oh isn't he just the cutest thaaaang?"
I feel about this the way I felt when I did my first sky-dive. Scared to death - before the jump, but out in the sky, no longer afraid. "Well, you're out here. You can either scream or enjoy the ride down. If the chute opens - great, you walk away. But if it doesn't, wasn't it a great ride down?"
Well, I'm "out here".
Next thing to do is a spinal tap to check the fluid and see what funky things may be growing in my brain that are causing all of this short-term memory loss, if any.
Then we'll go from there I guess.
I want to end this first entry with two things. One is a theory and the other is asking a favor.
First the theory:
What if Alzheimer's is nature's way of taking us back? As infant-like as when we arrived?
Think about it: Weren't you just as happy as a pig in shit floating around in your Mama's warm amniotic fluid, and didn't you resent that doctor slapping you on the bottom to introduce you to that first breath?
Yeah, I'm joking, and that's another way of dealing with the stress of not knowing my future.
So is there some kinda gene that's just now evolving whose job it is to take us back to infancy, and is it just in its beginning stages and that's why we're trying to "cure" it - because we don't yet know that this is its purpose? We're messing with something rather than letting it evolve on its own?
Anyway, that 's my theory.
Now the favor:
If you know someone going through this and you are close enough to them to listen to their symptoms, don't say goofy shit like, "Oh I do that!!!!"
Just listen to him/her and be supportive and helpful. It really doesn't help to say that to someone who is taking what is happening very seriously and is scared out of their minds wondering when they may not know who you are.
That's it. 'Welcome To My Nightmare" and let me hear from you, pro or con. I'd like to know that I'm not in this alone.