Thursday, January 10, 2013

Year Four - The First Real Symptom

So here I am again, I guess it must be fate (oops, sorry, almost fell into a Peter Cetera/Cher reverie there).  Probably it's because I'm off the really good meds right now as my psychiatrist opted to take a quick vacation with his kids back to South America and sending out a group message on the phone to reschedule patients.  Alas, when the phone rang here, Jackie picked it up and, as my poor darling is partially deaf (hearing aids and all), could not understand the message and hung up.  So I had no clue and when Monday came I went to prescheduled appointment only to be met with a locked door, and, eventually, the receptionist.  She explained and a new day was picked.  I asked about scripts I needed and they were put in place.  Unfortunately they were all the wrong ones.  I take Klonopin and Nuvigil, which are controlled substances in New York State.  You need to be given the script right from the doctor, so I called and waited and finally this morning I heard the scripts are ready.  So another joy ride to the psychiatrist later today, and then the pharmacy.  I'm going to put the previous in italics: So another joy ride to the psychiatrist later today, and then the pharmacy.  I at least have health insurance that lets me do this, for which I am grateful.

Earlier this week we had our support group, and the gang talked about the holidays and how they did or did not thrive through the two week break in meetings.  I'd like to discuss Mrs. J.  She is a recent widow and has no enthusiasm for any part of life except her little dog.  She can drive, but finds it exhausting.  In fact everything is exhausting.  So she goes nowhere and sees no one.  She talked about her late husband, and what a music enthusiast he was.  I just asked the question "What music do you like?"  She told us, and we encouraged her to play music, and recommended stations on the radio dial that she would like.  I told the group that I try and have music going all day, because, frankly, when the house is silent is when the voices creep in.  Right now I've got a new age channel playing Earth Lullaby by Jennifer Zulli.  If I need to go someplace early in the day (like unrescheduled psychiatrist's appointments), I'll crank up the rock and roll on the iPad, and dance, or something like it, around the house. Fortunately the house is back from the road with lots of trees and bushes.  Gets the motor running for a while.  Music speaks to me, at any rate, whether it be Beethoven or Roll Over Beethoven or A Fifth of Beethoven.

And it helps to have it as we move into Year Four.  Now I may not have the classic version of MS, but I do have an idea of what's going on in my head and things seem a little cloudier than last year and my balance is a little more off.  But here's the kicker:

I am a devout Trekkie, as those who have read these posts know.  As said devout person, I know how to do the gesture.  There's lots of people who can not for whatever reason.  A few weeks ago, I was watching a Trek rerun (counting down to the new movie) and I made the hand signal for Live Long and Prosper.  Only my hand did not respond quite right:

The left responds the same, only its just the pinky that doesn't get the news about what its supposed to do.  By the way, that's my actual hand, and not something I grabbed from Google.  And while not being able to do the Vulcan symbol is not a big deal (except at the movie in May), but it is another manifestation of losing more control over the body, i.e. the lesions doing their thing.  You can add this in with my toes kind of going their own way, and the extremities are showing the road ahead.

One good thing is that I'm not as far as long as my dad at the same time frame.  I've spoken enough about it here in previous posts.  I'm just as trapped inside, but I watch this with a wonder that I am pretty sure he never felt.  I know what's coming and am working as hard as I can to slow it down. I've still got a lot of things to do.

May we all Live Long and Prosper.

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