Monday, January 17, 2011

Who Would Have Thought That This Theme Song Would Be So Profound?

"You take the good,
You take the bad,
You take them both and there you have
the facts of life. The facts of life."
- Theme from The Facts of Life, Al Burton, Gloria Loring, Alan Thicke

People with ALS often try off-label treatments or experiments that are not part of a clinical trial. This is natural with a disease where there is no existing effective treatment and a lot of "promising" science with a dearth of deliverables.
Patients and those who promote various experiments owe it to all patients to record detailed data thoroughly and make them available to other patients. Too often we see anecdotal evidence of improvement recorded but fail to have data on patients who tried things without improvement. offers an area for patients to record their progress (or lack thereof). It allows patients to record points in time when treatments were started and stopped. It's free. It's searchable. There is no excuse for not using it to record the results of patients' experiments.
Too often we see people promoting promising treatments only to find out that their loved ones who tried the treatments and seemed to have improved have subsequently died. We owe it to all in this battle to have all of the facts in a public place for other patients to make informed choices.
People with ALS are certainly capable of sorting through the good and the bad. It's wrong to forget to write down the bad.

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