Lou Gehrig's Disease

I don't know anyone personally who has Lou Gehrig's disease (amyotrophic lateral sclerosis) but it does sound like pure suffering as the mind might still be sound but due to the nervous degenerative condition, the muscles in the body gradually waste away (the paralyzed would probably empathize).

The plight of a lady by the name of Pam Penley Schuelke was just so and there was an article that reported her battle with the disease that eventually took her life at the age of 44. You can read more about her life and her deteriorating condition in the article but I thought it might be interesting to pick out a few key points about the treatments that she sought and what her closest kin thought of as results.


Experimental Therapy

The article reports that having raised money through local newspapers highlighting her plight, she and her partner traveled to Tijuana in Mexico for a cord blood stem cell injection which contained 1.5 million stem cells costing USD 20,000. They acknowledge that the procedure is not one that is proven in medical circles, but her partner Chuck Greenwalt believes that the injection might have put his fiancee into a remission and given her a quality of life that she didn't have when she first was diagnosed five and a half years ago.


The body works in mysterious ways

A week before she passed away, according to her fiance, Ms. Penley-Schuelke was able to eat her dinner and was even able to stand up for short periods. Even more incredibly, just hours after her stem cell treatment, she was able to use her hands to grab, which she apparently wasn't able to do for some time. They were even considering opting for another stem cell injection just 3 weeks ago. Her fiance said: "I guess, when I look back, getting the stem cells gave us the opportunity to be active participants in this and not just on the sidelines. We were able to fight this disease that everyone said was so hopeless.."


An important point to note is that there is no cure for this condition, there is a drug undergoing clinical trials now by the name of Rilutek which is said to have "modest" improvements for ALS patients. Additionally, we should also note that Mr. Greenwalt and Ms. Penley-Schuelke knew that there was no cure and looked to stem cells merely as a possible way to improve her quality of life by perhaps stimulating the regeneration of some neurons or slowing the disease process.

I doubt that there will ever be a way to conduct any sort of real randomized controlled trial for conditions such as these, simply because disease progress is fast and providing placebos might just not be fair. Perhaps instead of decrying it as useless treatment, doctors could design some way of measuring quality of life before and after stem cell injections for the patient, these might provide some objectivity which can be presented reasonably at a medical meeting.


*The picture above is interesting as it cites excessive glutamate as a possible cause of ALS, and that Rilutek which acts to slow the bodies' production of glutamate, only keeps patients alive for another 2-3 months.