Saturday, January 31, 2004

Hawking's story

I did get to the Costco pharmacy and ordered the $831 Rilutek, and the tech who helped me believes that it will cost me only $15 and I will not be billed anything else. Jaw drop. That would be good, but let's just see.

Here is Stephen Hawking's story, located and sent to me by John.

Hawking talks about a time when he had to communicate by raising his eyebrows when someone pointed to a letter. This is actually a big fear for me: Not being able to communicate fast enough and having people make decisions about me without taking time to consult me. I am a control freak. I intend to work out a simple but effective system of eye movements, a code or language if you like, that will enable me to communicate with reasonably intelligent people (my family for example). I will post the chart showing the code on the wall. But if something happens to me unexpectedly that makes it hard to communicate, please, please, I beg Storm (my friend who works at NASA), to please work out a simple code on my behalf.

I really doubt that this will happen, but it is a big fear for me, hence the entry above.

No exercise for the past three days, and I still have not yet time to get started on the research trail, because I have been chasing pills and giving blood all over town, and being psychedelicized by my own fluorescent pee.

And though being a parent is wonderful, there is a Mommy Tax and a Daddy Tax on your time. For childless people to understand it, try this: Flush away half the free time you have by programming your watch to go off an random times for unknown durations, during which period you will cover your ears with headphones from a special radio that plays three radio stations at the same time AT MASSIVE TOP VOLUME (this is to ensure that you cannot think). Then tape oven mitts to your hands and run around in the street dodging traffic. After your watch signals the end of the random period, just relax and resume your work. Then reduce your free time by half again. And half a again. Then work smarter, not harder.

(While writing the post I was called on to wipe my son after his potty. I was going to say that it's not all as wild and painful as described above. But, ow! My elbow sure does hurt after it hit that door knob.)

Both the doctor and John referred me to:

Amyotrophic Lateral Sclerosis: a Guide for
Patients and Families, Second Edition, edited by Hiroshi
Mitsumoto, MD, and Theodore L. Munsat, MD, 2001, Demos
Medical Publishing, ISBN 1-888799-28-5

I am going to buy this book.

John also provides invaluable information like this:

"A search of medical journals found 4,700 articles on ALS for the years 1920-1998. Half of the 4,700 were published in the fifteen years from 1983-1998. In the period from 1993-1998, there were never less than 200 articles on ALS published per year."

I think the researchers find it so interesting because it is even across the world population and appears to have no causes. There is a Nobel waiting for anyone who will crack it.

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