Brooke, my son Kyle Brown just passed away a couple months ago from an agressive form of ALS called bulbar ALS which gave him 6-18 months to live (he made it about 20 months.) Like you, he was very involved with trying to push for funding and awareness of that terrible disease. He participated in the Iron Man half marathon race in St. George, Utah after his diagnosis and appeared on many tv and radio broadcasts to raise funds and awareness of ALS. He always knew any progress on medications would be too late for him but hopefully there would new emphasis put into the effort. As you know, there are some things on the horizon happening a couple drug companies and more research being done because of new emphasis on ALS thanks to people like you. Hopefully there will positive outcomes in the not too distant future. Thanks you for your amazing work for this cause and great outlook on life.
My family is trying to deal with a recent family member diagnosed with ALS, and we are in the angry stage. Not only is there no money to research it, there is no help or support. You are left on your own, and insurance doesn’t pay for assisted living. Work all your life and die. It’s not fair.
Sorry you are dealing with this. You are winning the game. We will all die. You are living. My friend got this around age 40. He was strong- a Carpenter/Contractor. He could lift about 300lbs. I struggled greatly while helping him to move a large, (5 panes of heavy glass) bay window. He chuckled at me- and lifted his end with one hand...while eating a sandwich. He got ALS very soon after he got the vaccine for Lyme Disease. As a hunter, he found himself in the woods with ticks, so at the time, it made sense to him. That drug has since been pulled from the market. It also happened to many others who took that drug. They sued in a class action but the victims got nothing. The Pharma paid out millions but it somehow all went only for attorneys fees. Logically, if a vaccine can trigger this, it stands to reason that other things can too. Things like environmental factors, diet, unknown germs, bugs/viruses, etc. Could nutrition, exposure, stress have contributed to what happened to you? I think yes. They should stop looking at it just as a disease and more as a symptom so they can better consider all the other variables. Yes, more research needs to be done. This should also start with diet and nutrition. The effects of GMO's, Vaccines, Processed Foods, Seed Oils, Sugar, Salt, etc. We did not eat this way 1,000 years ago. It could be a body's reaction. How was your nutrition and health prior to your diagnosis? I hope you beat the odds. God can do miracles.
I discovered this amazing woman online, she is changing the face of ALS, especially for young people. She is such a beautiful soul. I know a good few people with ALS who are now also huge fans. Keep doing what your doing Brooke, and lets hope that more funding comes available so that while we might not find a cure straight away, that we can get to stage that we got to with other once terminal diseases HIV, Diabetes, MS etc where it is at least manageable with a normal life expectancy. Hugh respect from Ireland Brooke.
