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Selling 2000 Ford Econoline with side entry Braun Vangater 2 lift, transfer drivers seat, hand controls. Super low mileage 29,500. Good condition, new tires. Located in Southern California. I’d be happy for this to go to another family affected by ALS, so if you’re in the market for a van...

I’m at my wits end here. PALS has almost no functional movement aside from head/upper torso and a few fingers. He uses his bipap about 20hrs a day. He can be left alone for an hour or so if he’s reading a book on his computer but he can’t move his hands so he’s stuck there if I’m not home...

How long can one survive with an FvC below 20%? (And no vent)

We are looking for an accessible van. What specific features in a van should we be looking for to make things easier, or what have you found helpful? Passenger seat that we can transfer into? Manual or power ramps? Is side or rear entry better? We also need to have a row of seats for our kids.

Just wondering what others' experiences have been after wrapping up the study. Hubbys last treatment was 2 months ago and although he was told that they Thought residual effects would continue for 3 months, I feel he has gone down hill rapidly since ending. It's almost as though the...

Had clinic day yesterday, first time in 5 months. Hubby has said he feels a little short of breath lying down so he wanted to check that out. Turns out his numbers have to plummeted since our last appt. he was over 100% and now is in the 70s. Very discouraging. RT said he needs to start...

Trying to get an idea of when we can expect to start- we have prescription and are in contact with their customer support but I was wondering if anyone here has first hand experience with it now that it's approved and available.

I am so frustrated: booking for an upcoming trip to visit my hometown, we have been unable to find any hotel with an accessible room that is more than one bed. I called every hotel in the area we want to stay and they are all just 1 queen sized bed, but we have two small children. What do...

I am wondering about the respiratory tests they do at clinic: when the therapist tests for FVC and a patient is at a certain percentage (say it's 95%), is that 95% predicted for ANY person of similar age/body/etc or is it 95% predicted of what it should be, based on the last test performed...

Just wondering how others are doing in the study. Hubby just had his 3rd infusion. His energy spiked afterward and lasts most of the month but it hasn't stopped his progression at all. I actually feel like it's sped up a bit since he started the trial.