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Vignette on who is a good doctor

When I was diagnosed, it was two days until my last day at work. I was doing so much cello playing that I didn't have time to goof around at the Academy of Sciences, I thought. I'd given my notice 4 months earlier and they had asked me to stay several times, but I always said "no" because it was my plan to go back to entirely focusing on music. I was making plenty of money in music, but I would not have been able to buy any insurance, with known MS. I needed a job in order to have continuing insurance.

Until the good doc told me what to do--get my job back--I didn't really suspect how serious the situation of having MS was. Since then I've come to terms with financial ruin that is the norm for those who have MS, and the loss of independence due to program after program that you have to toe the line for, including the medical establishment itself. Little do we realize in the beginning how many decisions that we will have continue to make to enjoy life (dammit) within the circumstances of being ill, uncomfortable, disturbed, disappointed, sad, confused, not to mention, angry.

To be clear: I enjoy many things. This story is about, in retrospect, the fact that the doctor gave great advice, guiding my actions. She helped me very much to mitigate many long term problems. She was Heidi Crayton in Washington, DC.

Neurological Overloads That Amaze

Performers often have the impetus to grab the instrument from someone they are listening to, saying, "No! Do it like this!" Of course, we don't usually do it, but we pretty much always think it. So, when I attended a piano trio concert last night in which the trio was playing repertory that I used to perform and know, I was experiencing physical memories as I watched and listened. To make it more intense, the cellist was not bowing well. He was forcing in order to try to get big sound. Big sound is drawn from the string by encouraging vibrations to become huge. Instead he was squashing the strings, especially in climaxes. (He broke many bow hairs--a sure sign of forceful pressure.) Thus, not only was I reliving passages that I once knew so well, but I was also involuntarily sending mental vibes to the man on how he should be bowing in comparison to how he was bowing.

Today my right (bow) arm is downright limp. It hurts to use it and it won't lift very well--not because of muscular pain, but because nerve impulse conduction is somehow all screwed up. I guess my neural pathways became overloaded simply due to my imagination, which in this case is probably almost as solid and realistic as actually bowing, due to 30 years of practice.

What a corner to be backed into: having a highly trained skill that overloads the neurology upon use. Can you believe that simply imagining is enough to overload my right arm!?

Looked upon: turned to stone. Inertia in early civilization.

Santayana on the situation

"While we think we can change the drama of history, and of our own lives, we are not awed by our destiny. But when the evil is irreparable, when our life is lived, a strong spirit has the sublime resource of standing at bay and of surverying almost from the other world the vicissitudes of this.

The more intimate to himself the tragedy he is able to look back upon with calmness, the more sublime that calmness is, and the more divine the ecstasy in which he achieves it. For the more of the accidental vesture of life we are able to strip ourselves of, the more naked and simple is the surviving spirit; the more complete its superiority and unity, and, consequently, the more unqualified its joy."

The Sense of Beauty: Being the Outlines of Aesthetic Theory by George Santayana, Charles Scribner's Sons, New York, 1936, p. 178

Inertia supports being located without of it all. (Where does inertia come from!? What does it ultimately mean for an organism/self?)

How one drug is sizing up

Considering how many investment magazines and firms write Tysabri up as money-growing-on-the-tree drug (due to the fact there is not any very good existing/competing therapy), I'm very suspicious of the powerful wishful thinking out there. You see...it's not just people who have MS who are hopeful--it's a larger community of investors who watch drugs in order to make money // not to mention Biogen // trying to stay profitable.

There is more information on side effects suddenly available too. I think the list of problems has to be carefully read by anyone considering Tysabri. Now I'm betting that we who live with all sorts of odds and ends of problems are not going to be interested in taking on extras in order to have one less exacerbation every 3 years. But we'll see.

Raising money for research and durable aids

This party that moves from town to town is planned for September 16, 2006. Bikers seem to have much social awareness as they also have fun. The pictured booth was at the Lincoln bike show last Sunday.

Have you ever twisted BOTH ankles?

Due to balance problems, but much more due to very slow reactions, I fall very poorly. Tripping over a seat cushion on Tuesday left me with both ankles twisted. There is a very strange feeling to limping on both. It should only be one at a time.

Freshly injured. Although the left looks worse, the right was actually more injured--as in re-injuries from my January fall.

Here is what happened for January and February

Sidewalks look like not too much of a problem . . . but watch out!!!

broken arm diagnosis

I was trying to nap at home for the first several hours after falling. I finally realized that this was more (and slightly different) pain than the usual and got myself to the emergency room.

Flipbook of the fall which jammed my elbow and shoulder up. I had a bruise on my shoulder from an inside impact of my own bone. Since it was a chip on the head of my lower arm bone, there was no cast. Interestingly, the bone doc gave me a corset-type-cast for my ankle which must be out of it enough that I didn't feel much pain there.

ankle "cast"

Forgot that I forget

My bedroom and bathroom floors are all freshly mopped and all of my towels and some of my blankets will soon be freshly laundered because I turned the bathtub on and went to write an email (and entirely forgot about the bath, thereafter).

Cats just sit there and look at disasters happening. You'd think one of them would come and get me.

It's funny how easy it is to revert back to thinking that you can count on your memory. I guess I forget that I can't count on it.

Information and visual aids for college students on the insulation that myelin is for nerves. Lincoln, Nebraska has a vibrant M.S. community, already apparent during my first month here. This is public speaker and Nebraska M.S. Society board member, Leatha Johnson.