Recent content by rnewton60

I started a month after diagnosis. It worked very well at the start, I kept full mobility for two years and 3 months. And I have Bulbar onset ALS so that is a good 4 or 5 months of extra life for me.

I have been on it for two years and I see my insurance company is paying about $400 out of the $15,000 charge. I would be surprised if anyone's insurance is paying 100% of any Radakava bill.

I have a spasm about every 15 days. I usually start coughing uncontrollably and that puts me in a cycle of not being able to breathe. I go to my cough assist and force air with that down my throat and it opens it up. Unfortunately then it closes again and I repeat. Total time I go through this...

I can't wait to fall asleep and dream of walking, and talking and eating again. I get great pleasure from it. It is the only time I don't have ALS!

I just rinse ot out with cold water and let it air dry. I get about ten to 12 uses out of one before it gets too hard to pull back and just toss it and get a new one. It isn't too expensive.

Hi! I have had bulbat onset for 28 months and got the peg tube 18 months ago. I am 100% on the peg for at keast 6 months. I have the slow feeding system but have never used it. I used a 60cc syringe for about 3 months but got tired of reloading it. So I went on Amazon and bought 150cc tube and...

Seems like a strange issue to me. I have had a peg feeding tube for 18 months and never had an issue. It has to be a faulty valve on the peg in your stomach. I don't want to insult you but do you turn the tube 270° after inserting it? Again just trying to help.

I agree with IGELB, try tral food and broth is a good one to start with. See if he has a reaction to that. I had no issues with the food supplements but that proves nothing for you.

I have been taking both for about 18 months and lacking good solid data is the only the fact that I have been fully mobile for over 2 years I think it has made a difference

I have Bulbar onset ALS and I was diagnosed based on elimination of evertvother possible disease. I had slight twitching on bot legs and one arm. And after 27 months just started to lose mobility. And is centered on my left arm too.

I have bulbar onset ALS since 11/01/19. I have reached the point where I cough uncontrollably in an attempt to clear my throat and trigger a reflex in my wind pipe that stops me from breathing for one or two minutes. Definitely not desirable! The cough machine doesn't appear to do anything but...

Still mobile and was diagnosed on 11/01/19, but with a caveat. I am start to lose mobility on my left side. Dragging my foot and losing balance when I get in certain positions. But I just drove from San Antonio to Madison, Wisconsin 1300 miles in two days. So I am pretty mobile.

I was diagnosed on 11/01/19 with Bulbar onset ALS. I am currently unable to eat or drink anything by mouth and Speech is impossible. I am still mobile but losing some mobility on my left side. I still live by myself and find ways to do everything for myself still. Hello to all of you and thanks...

I live in Verona Wisconsin.

I have Bulbar onset ALS since 11/01/19. It was suggested to me by my physican to get a Peg Feeding Tube done early. I was resistant to the idea for the all the reasons you listed. But I went online and did a little research and what I read I found compelling. So I agreed to get the feeding tube...