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). 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.Īnd though being a parent is wonderful, there is a Mommy Tax and a Daddy Tax on your time. I really doubt that this will happen, but it is a big fear for me, hence the entry above. 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 will post the chart showing the code on the wall. 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). 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. Hawking talks about a time when he had to communicate by raising his eyebrows when someone pointed to a letter. Here is Stephen Hawking's story, located and sent to me by John. 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. Maybe I will be the mouse who sets the world record for twirling. When will I fall off? Let's see how long I can stretch this out. I don't understand what is wrong with me. Here I am, twirling on a rod and they're waiting for me to fall off and die. Disease onset was defined as the first day a mouse could not remain on the rod for 7 minutes at 15 rpm. The researchers assessed each mouse's motor strength and coordination on a weekly basis, starting at 10 weeks, by observing its ability to remain standing on a rod rotating at 5 and 15 revolutions per minute (rpm) for up to 7 minutes. Survival as the endpoint sounds like doublespeak meaning the endpoint is when the patient died. A total of 959 patients participated in a multicenter, double-blind, placebo-controlled phase III trial, in which survival served as the primary endpoint. In the largest ALS clinical trial ever, Rilutek was shown to extend the survival of ALS patients by three months. The clinical trail for riluzole found this effect: So creatine-plus-minocycline is better than riluzole in mice. Water puts out a grass fire whether the fire was started with a match or a lighting bolt. To me, that means they have schooled up a bunch of mice who have the rare, hereditary ALS, and are hoping that the treatment for the symptoms of these mice will be effective in animals with non-hereditary ALS. Mice with this mutation develop nerve damage and neurological symptoms that mimic those of ALS in humans. Friedlander and colleagues studied mice with a mutation in the human SOD1 gene, which is found in about 20 percent of patients with familial ALS. If you know how to make ALS mice, don't you know what causes ALS? I think a hint lies in this paragraph from the article: Now, the first thing both John and I wondered is how you can develop or maintain a breed of ALS mice when, in humans, the disease is vastly non-hereditary and the cause is unknown. He sent me an article about a creatine-plus-minocycline study in ALS mice.
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