(Here's a video about what this drug does to fix the problem…)
While I am delighted with the news, I don't necessarily believe that it will benefit me immediately. Number one: it slows the progress of the disease. I have had it for over 50 years. There may not be much to slow. I probably only have one or two motor neurons left. From what I can tell, it doesn't regenerate any neurons. Number two: it involves needles in the spinal cord. Even if the idea didn't make my hair fall out, since I have a spinal fusion… I probably am not really eligible for treatment. Number three: while the results have been good for the test subjects, there have only been 170 test subjects.
I think I want to wait for the second-generation of treatment.
Of course, that step would come more quickly if we had a research hospital like Bunker Hill from the TV series Pure Genius. Even though that program is fiction, there is a certain amount of truth in it. One of the writers is a doctor, his life experiences led him into medicine to begin with. < https://www.cnet.com/news/pure-genius-how-a-doctors-real-life-medical-drama-drew-him-to-the-high-tech-show/ > More importantly, some private research hospitals are doing extraordinary work and are bringing real results. For example, in the realm of cancer treatment, there is Huntsman Cancer Institute. Located in Utah, it was "created" by a cancer patient who knows what it takes to get well. An older example is the Howard Hughes Medical Institute. In a sense, it is the prototype for the TV series-it was created by an individual with money who wanted to advance medicine.
About a year ago, the Chronicle of Philanthropy had an article outlining how private medical research can move things forward when standard government medicine slows the pace. People with ideas don't necessarily do well with vast amounts of bureaucracy. People in general, other than in the political realm, don't seem to do well with bureaucracy. < https://www.nytimes.com/2014/03/16/science/billionaires-with-big-ideas-are-privatizing-american-science.html?_r=0 >
Now, if I had my own Bunker Hill Hospital, and the freedom to design my own experiment to try on myself (with shades of Dr. Frankenstein running rampant), here's what I would do. I would get the Spinraza injections. Then, I would 3-D print something like an exoskeleton attached to something that would take the most minute pretense of a movement and magnify it. (Kind of like how a microphone can magnify a very quiet voice…) Then, I would attach virtual reality goggles so I could see myself moving around much more broadly than my current capability.
You know, they have been doing this kind of research. Again, not many test subjects. It almost sounds too good to be true, but… I really do want it to be true. Between the medication, virtual reality, and electronics… I really would enjoy testing the theory that I might be able to develop something resembling movement.
Of course, this isn't an option at the moment. I don't have my own private research facility. I don't see any likelihood of $30 million landing in my lap anytime soon so I can develop said facility. Howard Hughes died and didn't leave me any of his funds, and I'm okay with that.
Until this is an option for me I will spend time rejoicing in what God has done and continues to do in the lives of His People. His extravagant and abundant living forgiveness is mine to have and share. There are delicate and transient beauties all around. Loving friends and family surround me. There are opportunities to reach out and care for others who are not as richly blessed as I am.
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