ALS involves a different “doctoring” than almost any other illness. A doctor confirms that you have ALS through a series of nerve function tests. The doctor then tells you to come back in three months and he’ll determine whether the disease will advance rapidly or more slowly. After that, you’re on your own.
Do your fingers cramp up? — OK, we’ll put splints on them for you.
Can’t breath? — OK, probably time for a ventilator.
Stumbling? — Ok, get used to using a walker.
Can’t walk? Your legs can’t be trusted? — Ok, now time for a wheel chair.
Can’t communicate any longer with voice or computer? — Ok, now time for an eye tracking device to spell out your words on a tablet screen.
There are no known cures for ALS. But, I figured, I’ll try anything reasonable.
So when a friend called to suggest a peptide created for MS, I contacted the researcher in Dania. Florida. He explained that ALS is like a dump truck headed for a cliff. The peptide would not remove the ultimate plunge, but it could slow the truck down.
In March 2014 I began a daily treatment with the peptide derived from cobra venom. It would cost $10.000 per year. However, I had to cease in August 2014 because it was seriously effecting my liver.
In early December 2014 I had my first injection of stem cells. I originally went to Mayo Clinic in order to participate in a stem cell research project, but I was two months too late. However, as in any research project 50% of the participants are placebo recipients. So when my nephew called to suggest stem cells from a colleague, an orthopedic doctor who had phased out his normal practice to engage in stem cell treatments, I went in that direction.
The stem cells were taken from umbilical chords donated by parents to a stem cell bank for research.
In March 2015 I had a second treatment using stem cells taken from bone marrow in my hip. That was an interesting procedure! The doctor gave me a local anesthetic, and his team literally used a mallet to drive the large needle into my hip! Thump! Thump! After removing the marrow, the stem cells were harvested from the marrow and injected in an area next to my spinal chord.
Were the injections productive? With ALS one can never tell, for the hoped result is delaying the progression of the disease and not its cure. Did it slow the progression down?