BLUE

Hey Blue Skies,

I'm okay. I feel better today because it's cooler and rainy. Air conditioning gets to me.

How am I doing (ALS-wise)?

My speech is getting noticeably worse. My right arm is weaker than my left. I fell asleep on a magazine (a month ago) and I have a sore spot on my back that will not go away. Odd.

It's getting harder to do stuff. Putting pants on (a trial). Getting into bed (many stages to get myself there).

I've been on this big vitamin therapy (self prescribed - guess work), and some suggestions from a naturopath, but lately I've given up on it.

I guess I'm down-ish. Not terrible.

You know, I crawled into a bubble of my own making and I think it keeps me in drowsy denial.

Still, I've been short with people. A little.

______

I like Beth Israel. They are a little more together in terms of therapists and contacting me. The visits are smoother. And its a breeze for me to get there. The clinic is on Union Square. I like the doctor. McGowan. An Irishman in natty clothes. Kind and funny, but dismisses anything alternative. I told him about the naturopath and he had no real interest in the naturopath's suggestions, he simply asked me how much he charged. But I don't think he's up on things. I have this sense that all neurologists have given up.

I told him at my last visit, that ALS clinics need one more person to come through the room. This person would specialize in good news about research. This person would explain the possibilities out there for a break through. And each time you came for your visit, this person would have updates.

___________

I read about RNA in my book "Stem Cells for Dummies". That makes sense to me. I'd have to look at that book. The RNA gives the orders, right?

I want to understand it all. But I still can't bring myself to spend too much time doing research or even following the threads on PLM.

My brain (small and easily tired and distracted) has only so much room for daily focus. These days, I'm cursing myself for not being more well traveled or read. I can't write the way I would like to.

And I think I've been frustrated in life. And now I ruminate daily, trying to figure out how I could have had less frustration and more ecstasy? enlightenment? self acceptance? exploration of my potential?

I may try something serious. Monterrey? A more committed approach to therapies here in the city.

I've had my head in the hole again. Between dressing and eating, the days seem to get away from me.

Right now, I need to redo my apt for wheelchair.
And I'm trying to get away in August. But how? with my new borrowed electric wheel chair? It's too heavy to lift.

Sorry I went on so long.

I have an idea for a PSA. 

Yours,

CHARLIE_ROBERTS