Recent content by Bob R

I'm almost two years into my nightmare, and every day I check a half dozen or so ALS websites to see what's new. And every day there is something new. Most of the new stuff falls under the heading of basic research. I'm not expecting to read that a cure has been found. That's not realistic...

I have been using my peg tube for almost three months. I can't chew, so all my nutrition comes through the tube, I have been living exclusively on Jevity 1,5, along with many supplements and vitamins. My vital signs are very good. Is it desirable or even possible to live only on Jevity ...

The phase 2 trial was a single dose application, and was pretty successful. Phase 3 will be multiple applications over a period of about one year. If even more successful, it may be available in about two years. This news was enough to raise my survival odds from 98/2 to 95/5 against.

I have bulbar onset ALS and my saliva, if left alone, is ridiculous. I also have extreme yawning, which I see as a muscle spasm. Left alone, I will yawn every minute or so. And when the yawn is near the end, I grind my teeth mercilessly. Oh and since all the muscles around my mouth are gone...

I agree the side effects are pretty scary. But if the options are certain and horrible death or possible side effects, well....I believe ALS has not one cause, but many. And that does not bode well for a single cure. What we may wind up with are a number of drugs, some will work for some and...

So it's already found safe. There should be a quick 6 month study for efficacy, then it should be prescribed off label if the FDA doesn't act. Yeah, that may happen.

I agree, but how hard would it be to get PALS to sign a release agreement. There should be a difference between testing for ALS treatment and an acne medication or hair restorer.

I completely agree and this has been my criticism since the beginning. There is no sense of urgency in these trials. Here's my idea for a clinical trial. Do due diligence in the lab and in animal trials. Phase 1. Get 10 or 12 PALS give them the drug for one month. Adjust the dose if adverse...

I pressed settings/ RR is at 10 BPM, but in use, it fluctuates up to 18. There are other numbers but they fluctuate all over. what am I looking for ?

I have bulbar onset ALS for close to 2 years. I'm pretty much confined to a hospital bed for 22 hours per day. I find myself sleeping 12 - 14 hours per day. When i sleep, I have no problem inhaling but exhaling seems to take twice as long, and seems to be labored, although not consciously so...

I don't want to get political,but I will state this as fact. On Hillary Clinton's website, she proposes spending $ 2 billion per year on Alzheimer's disease and related disorders. A L S is related to Alzheimers. https://www.hillaryclinton.com/issues/alzheimers-disease/

There are many trials underway. Check out https://clinicaltrials.gov/ search for als. Unfortunately, there doesn't seem to be any urgency to any of it. A trial can take 2 - 3 years in preparation, trial, and results. Then it's time for phase II. And then, even after phase III, usually he...

I'm one month into my peg tube. Before I was eating, but too slowly and losing weight. I was also dehydrated, so I figured a tube would be a good idea. Now, I get all my nutrition from Jevity 1.5. I still have an appetite, but my tongue has completely atrophied, and the muscles around my...

3 days ago I had my first peg tube inserted. The pain and discomfort is still substantial. Especially when I cough, which is frequently. Also, I have become much weaker throughout my body. Have reduced rang of motion, due to the pain of the tube, and have been having severe muscle spasms...

I can completely relate. I'm 18 months in to bulbar onset A L S. While my swallowing muscles are fine, I can't control them. Food goes down OK, but liquids are a problem. Sometimes I swallow before my throat opens to let the liquid fall down. Other times I swallow lots of air. Or my...