1. Colleen15


    Bulbar onset diagnosed in 3/23. No voice, no eating by mouth. Legs getting weak. Arms & hands ok. Breathing is ok. Is anyone else exhausted? Just taking a shower and getting dressed is exhausting. I sleep about 9 hours at night and nap 2-3 hours. I don’t leave the house. I just sit.
  2. Doglady

    Limb onset question

    Hello all! It's certainly great to be a part of this group of experts - and I do appreciate all the helpful advice I've received and read in past messages on various topics. The knowledge and wisdom here is awesome and I've learned a lot! So, where else would I go when I can't figure...
  3. rictak in IA

    I think I'm finally giving up

    7 1/2 years its been now. from a slight tingle in her left foot to total paralysis took roughly 2 years. very slow decline since then, really where do you decline to? her breathing is compromised, but O2 levels stay up with nightly use of the bi-pap. If it was just us, I'd probably suck it...
  4. J

    20 years old almost certain of having als.

    Hi, I wrote here one month ago about my symptoms and since then I tried to stay off this forum but my terrible problems and symptoms are not letting me to do so. The most concerning symptoms are : - Slower talking on and off : Few days I am pronouncing words slower and less precisely, it takes...
  5. Tedstehr

    Florida and Aruba

    We will be setting out for Florida and Aruba on Saturday. We will leave for Seattle midday and fly from SEA to Orlando Sunday morning. Two days in Walt Disney World and then to Miami. We fly on Friday AM to Aruba where we meet up with my son Jeremy who has been in New Zealand since January. We...
  6. Bestfriends14

    A question for PALS

    Hello, My husband has just ended his clinical trial (he dropped out March 28th) for Pimozide. Apparently, he's not progressed in his right leg or arm since last September but has only slightly in his left leg, which is his drop foot leg. However, I am finding it harder and harder to believe...
  7. T


    About a month and a half ago or so, my energy level just plummeted off a cliff. It's a struggle to do anything. I get really tired going up stairs. I get tired walking. I get tired feeding. I usually don't really get out of bed until noon. I manage to get a couple feedings in before that, but I...
  8. S

    Exhaustion and Frustration with Family

    I have recently been getting more tired, taking naps and when walkingtbe dogs around the block a couple of times I suddenly had to sit down in the road It is hard to explain the exhausted feeling that hits me. I think it is my stomachs muscles. I feel like my husband and kids (18, 19) don't...
  9. M

    Sorry...Im back after 2 years for reassurance

    Well.. I made it over 2 years without logging in...but I have renewed concerns. History: 2012 twitching, perceived weakness all over..had 5 exams and 5 clean EMG's between then and 2015. Accepted no ALS Fast Forward: Extreme fatigue and twitching since 2015 but no clinical weakness. April...
  10. S

    Physical and Mental Exhaustion

    I know PALS are not supposed to fall... But last night my PALS was in the floor 3 times. I hate this d*** disease. He absolutely won't use any assistive devices until absolutely necessary. This morning, I told him... You have to make some changes. My back is really hurting. I must learn to...