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Hi - I'm new here and know someone who has ALS. She has a vent and trach. One of her family members wanted to talk about knowing when it's time to turn off the vent, and that my friend had indicated she thought it was time. I thought that it can't be just turned off like that! As they are 100%...

:mad:So as if we didn't have enough to deal with as Glen's FTD seems to be worsening, and his physical symptoms.. he's agreed it's time to stop working, and he can no longer put on a jacket on his own, either zip front or over his head. NOW.. my mom's in the hospital and been diagnosed with...

First off, I would like to thank everyone who has taken the time to read my posts and then to reply. This morning I had my MIR done, (both the Nueo and GP had to be convinced by my wife to do it). As soon as it was done I brought the CD to my Neuro. to be read. He asked the people in the...

My husband (PALS) has started to feeling dizzy in the last week or so. I wonder if this means it's time to start bipap? He doesn't think he's having breathing problems. Has anyone else experienced this?

Please excuse my ignorance. I have heard there is a registry for PALS. Where is it? What is it? What do they do? Is this the place?:-D I've spent the last 10 months in denial and running away. It's time to stop that and deal with my anger so I can enjoy the time I have left. Thanks, Wes

Hi Guys,.....I have reached the point of needing a Bipap. Respiratory therapist was here today with the equipment. As I am claustrophobic I opted for the nose pillows and was fine until he told me I had to keep my mouth closed. Have been a mouth breather for years. Every time I closed my...

Just got back from spending 4 weeks with Dad. He's really having difficulty talking now so I am thinking it's time to start alternative ways of communicating. His doctor has prescribed oxygen for dad. He has had a couple of chest infections and was diagnosed with COPD a couple of years ago...

I still haven't made it to the ALS clinic- they don't take my insurance and I don't have the money right now. It is really ok though, I figure if I have it I have it and the longer I wait the more likely it will show up. (Of course there could be some denial and I will admit I am kind of afraid...