frustrated

  1. B

    My husband cried today

    For the first time since his diagnosis in June, my husband broke down. He has rapidly lost his ability to speak, and he was trying to tell me something that I just couldn't grasp. He tried to write it down but could only write one word that made no sense to me at all. He can't put his...
  2. K

    Claiming to be short of breath while on trach and vent

    Hi guys, My dad got his tracheotomy and ventilator a little over 2 weeks ago. When we were at the hospital, he was doing fine adapting to it. His heart rate was around 70-90. However, we just moved to a nursing facility that has a subacute section and the first week, he was doing fine. But in...
  3. A

    Ice Cream

    Hi folks, I have been spending spare moments the past few days, as few as there seem to be, reading some of the posts on these forums. Some are comforting, some are helpful, some are terrifying and fill me with dread for what is to come. Whatever emotions the posts inspire though, it seems...
  4. L

    I have muscle atrophy but other symptoms, too. Pls help :(

    Hello I am new here and per many other threads I've seen would consider myself a "guest," since I have not received a diagnosis yet. I first want to say I am not here hoping to receive a diagnosis from anyone. I understand that only a doctor can do that with proper tests - and I am seeing...
  5. J

    Cognitive changes/Advice

    My PALS, bulbar onset, diagnosed last December has been steadily declining both physically and cognitively. Back in April we enrolled in the LEFFTDS study at the Mayo Clinic because there was a possibility that he had familial ALS due to C9 gene mutation. As part of the study he did have a...
  6. N

    A few questions

    Hello all. I have a few questions regarding my current plan of care but I will give you a bit of background first. I am a 41 year old female and a critical care registered nurse. Several months back I began noticing some increased general fatigue but always wrote it off as stress due to my...
  7. N

    Tips on dealing with MND and Dimentia

    Hello all. This is my first visit to this forum and I'm badly need of some caregiver support. I am currently in a foreign country taking care of my aunt who is diagnosed with Motor Neuron Disease and Dimentia. She cannot speak, can barely swallow, and is starting to lose the ability to walk. Her...
  8. D

    Hotel complaint

    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...
  9. N

    Struggling

    Sometimes I even hate to do a rant like this because I feel like I'm whining. It's taken me 24 hours to get up the courage to put pen to paper, as it were. Yes, I'm struggling. The why has multiple reasons. These are on no particular order. 1) sleep. Hasn't been going well. Mostly due to the...
  10. C

    Als with FTD?

    Does anyone have experience with FTD in their PAL? My husband is a slow progresser diagnosed 4 years ago with bulbar and hand onset. I noticed a reference to FTD in a different post and had never heard of it, but have been so sad and frustrated with recent changes in my pal that now I've...
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