I know way to little about it.and because of that, I'm of no help.but yet I do hope for the best for them.
Agreed.
Rambling notes in no order.
I've done a quick search. Conventional medicine doesn't seem to offer any help.
Bear in mind that ALS 'foundations' and 'projects', although having their hearts in the right place, are more devoted to the process than the patients.
Similarly, someone developing a drug or therapy wants their method to be successful and will stick to it until well after its promise may have been exhausted.
That isn't to say they are not useful, but their priorities may be different.
ALS would appear to be a result of exposure to something. An increased likelihood from military service suggests some agent not usually used by the majority of the population, possibly a chemical or compound.
There may also be a correlation to head injury.
The limited number of genetic cases also suggests that exposure to an agent is needed. The genetics may add to the likelihood but are not necessary.
Some of the studies see hyper-excitation of the neurons, but whether this is the cause or just one of the effects isn't known at this time.
The somewhat regular onset at a certain age also points to a change in the body having something to do with the start of ALS.
Unfortunately diagnosis is a bit generic. ALS sorta merges into other degenerative diseases like Alzheimer's and Parkinson's and probably many more which I am not aware of.
But this also means that treatments for other degen diseases may be of some use in ALS or indicate other treatment methods that may be of merit.
Here's the sort of info I would be looking for.
karger.com/cmr/article/24/3/175/67556/Healing-of-Amyotrophic-Lateral-Sclerosis-A-CaseNote that references 13, 14 and 15 in this article are on reversal of ALS. Worth a look.
Your best source of info is people who have had degenerative diseases and recovered.I know nothing about the following but I would suggest you look at non-Big Pharma medicine too. Things like acupuncture and other non-Western healing.
Some in-vitro studies show promise from exposure to magnetic fields or stimulation by light.
Massage, exercise, diet, meditation have all shown to be useful in curing diseases.
Investigate 'terrain theory'.
Bio-dynamics or aromatherapy.
Any form of healing which treats the whole body may be worthwhile.
Prayer.
Good luck and well done for caring.