I've been on the Dexpramipexole study for about 4 months now. Based on my comparisons at PLM, I'm fairly certain that I'm on the placebo, but of course that's only a guess.
Because my breathing is labored at night, I've been prescribed with a BiPAP. I'm also in contact with clinic in Cleveland...
Have a new blog post if anyone is interested.
It's extremely difficult as a patient to watch the limited progress made against ALS by the medical community. Almost 150 years since the disease was identified and only one lousy, very expensive medication (Riluzole) that may extend life only 60-90...
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I may have only had the opportunity to post on this site once or twice before my daughter's battle escalated. Tracey was in the loving care of Hospice when she died on Oct 11th at 11 a.m. She was only 40. Her husband George and I never left her while she was on her journey in the hospice...
Tracey was diagnosed in Oct 2008. But in the past couple of months, her deterioration has increased rapidly. Her ALS started in her left foot and has progressed so much that she now has a hard time speaking.
It's so hard to see her in pain and her anxiety level is off the charts. She takes meds...
Hi folks,
My husband and I saw our Neurologist and Resperologist on Tuesday, and asked them about getting a Diaphragm Pacer. They both discouraged us from getting it, as they don't think it helps much, and just helps to delay the bipap.
As my husband is already on the bipap, they don't think...
Hello: I'm new to this site. My husband was diagnosis with ALS on September 2009, after his, left foot dropped. I have been checking into a Diaphragm Pacer for breathing versus a Tracheostomy which is more invasive then the latter. Even through FDA hasen't approved this procedure yet for ALS...
Does anyone have information on diaphragm pacers in the u.k.?
I emailed the clinic in Paris, but they didn't reply! I know of a hospital in Sheffield who are trying to raise money for them, but they too haven't answered my emails. Getting one on the N.H.S. is probably not an option, but I think...
I sent away to the company to get their info package and am taking it to my pulmonologist.
He was under the impression that it wouldn't work for us so he wants to see the new information. It's called a diaphragmatic pacemaker.
It's from Avery Pharmaceutical.