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  1. M

    Concert for ALS

    My sister and I are planning to play a concert as an ALS benefit. We live in the Pittsburgh, PA area, and it will be at a church. My sister contacted the ALS association to get the OK, and they said yes. It will be on April 26. Do you think this is something people will be interested in? We...
  2. M

    too sad

    I've been avoiding this website for the past week. My father died Monday morning, 12/10 at 7:10 AM. I was with him when he took his last breath. A month or so ago, I thought he seemed like he could go on forever the way he was, but he rapidly declined the last month. He was to have a neuro...
  3. M

    bedsores

    I was wondering if any of you have bedsores. My father has a large one on the left side of his rear end, right where he sits. He has had it debrided by a wound doctor, and has another appointment on Wednesday. We were told to change position every two hours, and to only sit on the sore for an...
  4. M

    FVC test

    I was wondering how low the FVC (forced vital capacity, I think) can go. When my father was diagnosed @ 7 years ago, he was at over 100%. He is now at about 50%. He has difficulty breathing, also, because his head hangs and bends his windpipe. Lying down he is pretty short of breath. I know...
  5. M

    dry mouth

    Do any of the PALS get dry mouth? My father's mouth is so dry, he's often so thirsty, and just wants a drink to wet his mouth. I have always read that drooling is a problem with ALS. He doesn't usually have that problem, just the dryness. He has always been a mouth breather, and maybe that...
  6. M

    recliner lift chair as opposed to hospital bed

    Does anyone else find that people, (both in the medical profession and not) do NOT understand about ALS!?!? My father spends almost all day and night in his recliner, except when we put him in his wheelchair to take him out to the table to be fed, and also when we put him in the bathroom. The...
  7. M

    trunk weakness

    Of my family, I do the most caretaking of my father. I do a pivot transfer to move him from place to place. The only time he really has to stand and stay standing is when I clean him up after using the toilet. Even though he is putting weight on his legs, he has to lean on a towel bar and...
  8. M

    sores

    Do any caregivers or patients out there have to deal with sores? My father has a sore high on the back of his left thigh. Covering it with a huge bandaid helps it to feel better for a while, but the adhesive itself makes the sore a lot bigger. It's so big now, that there is nothing that I...
  9. M

    ALS and chronic nasal congestion

    Has anyone noticed constant stuffy nose with ALS? Living with ALS can be unpleasant enough, but my father also has severe nasal congestion. Nose spray was great for a while, but now it doesn't work good enough or long enough. It's hard enough for him to breathe with his head hanging down all...
  10. M

    neck braces

    Does anyone know of a neck brace that actually works and doesn't hurt or irritate the chin? My father's chin touches his neck, so that makes eating, conversation, etc. difficult. He doesn't seem to have bulbar symptoms, but he can't hold his head up. We tried a neck brace that the doctor...
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