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I haven't been on here much in the past couple of years, but I thought I would share that my mother finally passed away at our home in June, exactly 3 years and 8 months after she went on a ventilator. We decided to take her off the vent when she started showing preliminary signs of sepsis, most...

That's great that you sleep so well! My mother takes a small dose of Seroquel at night, but otherwise, no sleeping aids. (For others reading this, I would discourage the use of Ambien because it causes all sorts of problems.) Mom has an alternating pressure air-loss mattress, but after a nasty...

I don't mean to burst anyone's bubble, but there is no evidence that stem cell therapy works at this point. Stem cell research is a great hope for the future of neurological diseases, but right now, it's still in the early research stage. In order to know whether it works, doctors need to...

Joel, I haven't been on here in a while, but thanks for your info. My mother has been on a vent for almost two years. I do have a question about you sleeping through the night: do you need to be repositioned every 2-4 hours? I can't remember whether you are able to reposition yourself to...

Home health is a major deficiency in ALS care. Scheduled visits typically last 15-30 minutes (if not shorter--we've seen visits that last 5 minutes), and you *cannot* have home health come on the same day as admission or discharge from a hospital (Medicare will not pay for both hospital and HH...

I am sorry to hear what you are going through. My mother's official diagnosis was PMA, but we didn't have any problem getting Medicare processed quickly. I submitted information from the National Institutes of Health website to "prove" that PMA has the same outcome as ALS. I included it along...

I don't have any answers regarding dependent children, but the SSDI application took about a month. I set up an in-person appointment at the local Social Security office, and the processor was really nice. She helped get everything done quickly, and she had the eligibility dated retroactively...

Hi Pams, Could she get to Houston? Dr. Stanley Appel at the Methodist Hospital in Houston is phenomenal. My understanding of the stem cell therapy is that it is a scam. Someday it will most likely be a reality, but right now, there is no cure for ALS. The money would be better spent on a nice...

Lorie, I have not been on here much lately, so I have missed these updates on Tim's situation. Just a quick note to say that I am thinking of you guys--remember that you are *not* alone, and you are a very special person. Carolan

Multifocal polyneuropathy will show a conduction block on the nerve conduction test, whereas ALS will not. Think of a conduction block this way: the signal is sent down the nerve, but something obstructs the signal from making it all the way to the end of the nerve. Have you ever seen a string...