Chapter 16 from Google LDN! - Nightmare Time

[Guest guest]

16. Nightmare Time

These

are the times that try men’s souls.

I’m sure I heard that somewhere… Just kidding!

So this is how bad it’s

getting. Sorry if it brings you down,

you need to know to understand the rest of this book if I finish it.

Just got back from UCSF with my

son Barak. Dr. Goodin wasn’t there so I

got to see Dr. Crabtree. (Terrible name, but one sharp woman…) She agreed that it was most likely that the

self diagnoses I had made of suffering from PRMS (Progressive Relapsing

Multiple Sclerosis) was correct. Here’s

why:

PRMS

tends to hit older malesPRMS

tends to hit those with spinal compression (Did I mention that mine was

compressed to 1/3 of its normal size?)PRMS

is characterized by early depression onsetPRMS

is characterized by early cognitive dysfunction (Before many lesions

appear.)My

cognitive dysfunction continues to deteriorate absent a relapse.My

balance continues to deteriorate absent a relapse.

I’m sure there’s more I’m

forgetting, but the above is enough. To

give you an idea of how bad it’s getting:

After we got home, I went to turn

on the computer, and noticed that my computer glasses were missing. I remembered that I had left them hung on a

specific curtain in the RV. Proud of

having remembered this, I got up and walked the 40 feet or so to the RV. By the time I got there I had forgotten why I

had gone. What was I looking for? I couldn’t remember.

No problem… Happens all the

time. I just retraced my steps, sat down

in front of the computer and was reminded that I couldn’t view the screen

without my glasses. Right! My glasses!

I got up and walked back to the RV. By the time I got there I had

forgotten why I had gone. What was I

looking for? I couldn’t remember.

“This is ridiculous!†I thought

to myself. “I should probably look in

the driver’s seat. Maybe I’ll see

it…†And damned if I didn’t! There they were… The Iphone headphones I had

forgotten to bring them in… Ha! Got

them….! I proudly returned to the office

bearing my prize to sit in front of a fuzzy screen…

“Shit! My glasses!†I realized in horror what had

just happened. “Not this time!†I said

to myself. This time, every third step I

said the word “glasses†out loud. When I

got to the RV I went straight up to the curtain and retrieved my glasses. I felt a little silly doing it, speaking out

loud like that, but I really didn’t want to forget them three times in a row.

My “drunken sailor†routine

continues to get worse. Bob made me

switch to running shoes instead of my comfortable but supportless Uggs. Barak said my walking looked better as a

result, and I was gratified to hear that.

I still almost fell a few times today for no apparent reason.

At least I can still drive as

long as all I do is drive. I have a new rule since being pulled over by

that cop. From now on if I want to do anything other than drive I pull over

first. That includes adjusting the

radio, Iphone, whatever that requires me to take my eyes off the road for more

than a fraction of a second. I’ll still

look quickly down to check my speed, but that’s it.

Anyhow, this is how it is. I called my father, desperate for

advice. What should I do? Keep on keeping on and hope nothing happens? Stop driving altogether and treat myself like

an invalid?

His advice was to start writing

and sticking to a daily schedule, checking off items as you complete them. He said he’d been doing that for years and it

really helped him. Don’t forget, he’s 93

and still writing books!

I asked my wife if she would help

me do this and she said “Of course I will…â€

No surprise there. She’s been after me for years to make lists

and follow them. I’m not really sure why

I have resisted so much until now. I

guess it kind of makes me feel like a prisoner.

But I have to remember that I’m just being a prisoner to myself at this

point. That’s not even possible, is it?

The last question was whether I

was suffering from subcortical dementia.

Not all PRMS sufferers get it, though some do. I asked the doctor how one found out and she

told me there was a battery of unpleasant tests one needed to take. I told her to schedule them for me and hope

to find out a date next week.

After all this, I’m supposed to

find equanimity. I’m working at it. There’s no doubt that the writing helps. I guess putting pain on the page makes you

feel better because it’s shared. That

makes no sense, I know, but we’re talking human neurosis here!

So, to who ever ends up reading

this. Thank you for sharing my

pain. I feel better already.