night

  1. Lkaibel

    The Next Part of the Journey

    So, here I am exactly one week out from my husband's death. It was really only after he actually passed that I have started to realize the absolute hellfire we went through together. There was beauty, love, and moments of joy for sure. I am very sure I never felt closer to or loved another...
    • Lkaibel
    • Thread
    • back death diabetes diet eating exercise friend health life love music night pain stress test work
    • Replies: 264
    • Forum: Past caregivers
  2. G

    Help - newly diagnosed

    I'm a bit lost - finally third neurologist confirmed I have ALS. I am using walker now - wondering if I should go ahead and purchase a used wheel chair on Craig's List. Also - in a great deal of pain at night - horrible cramps - given muscle relaxers - still little help. They tell me ALS is...
  3. J

    My symptoms, my fears

    Hello, first of all thank you for letting me join this forum. I’ve been dealing with some symptoms in the last month and I wanted to ask your opinnion about it. I’m 40. For some time I had some numbness in my hands, legs and upper lip so I had an appointment with neuro to see if something...
    • JTTP
    • Thread
    • advice anxiety cramps emg fear finger fingers hours ice mri night pain stiffness symptoms test tests twitching wanted worried worried about als worry
    • Replies: 10
    • Forum: Could this be ALS?
  4. K

    Trilogy Settings with Progression

    My PALS has been using a Trilogy for the past year. His latest FVC was 26%, with MIP at 20 and MEP at 32. We can tell his weakening muscles continue to affect his breathing, just since Clinic in February. He had some issues with air hunger at night and increasing EPAP from 6 to 8 took care of...
  5. S

    New caregiver

    So sad. Husband diagnosed end of December. He's very used to being in charge and making all the decisions. I am a RN/NP. So I know a bit about caregiving. He fights me on all the ways to do things. Slowly he is beginning to listen to me but it's frustrating. I only seem to cry when...
    • Stacygol
    • Thread
    • anxiety back caregiver caregiving cry diagnosed equipment meds new caregiver night respite sad sleep worry
    • Replies: 8
    • Forum: Current caregivers
  6. T

    Symptom Questions from 35/m

    Hello, I hope you are well or as well as possible. Thank you for checking this thread and thank you for making this section of the forum. It must be very difficult for some members. Your patience for those of us with questions is greatly appreciated. I've refrained from ALS symptom-checking on...
    • trysmiling
    • Thread
    • als arm fingers holiday hope muscle muscle fatigue neurologist night onset progression questions running shaking sleep stress surgery symptom symptoms timeline tremor wanted weakness weight loss wrists
    • Replies: 11
    • Forum: Could this be ALS?
  7. J

    How are you?

    How I hate that question now. It's become almost a default greeting. I know most people are trying to be kind by asking, but I honestly don't know how to answer anymore. I usually just say "We're OK" or "We're hanging in there". But honestly, we're not OK. And I'm sometimes just hanging...
    • Jrzygrl
    • Thread
    • angry anxiety back bed chair cold crying decline frustrated heart hours life meds night progression sad sling story wanted wrong
    • Replies: 153
    • Forum: Current caregivers
  8. D

    Ear “throbbing”

    Left ear seems to be quite often “throbbing” a little. I have worn hearing aids for several years and have occasionally had this feeling, but not this often and for this long. Could this be ALS related? This kept me up for some time during the night. Could not get back to sleep for awhile.
  9. D

    Need To Get Up at Night to Potty

    Until last night I have been able to get out of bed to use a potty bucket. Last night I had to call my wife 2 times to get me up. I was able to get up a couple of times myself? I get up my using right arm an swing legs over side of bed. I don’t even want to go to bed tonight. I am a 77 YO...
  10. T

    tricks against fears and anxiety

    Dear all. I've been caught into a depression spiral lately. I'm quite stable symptomwise as for now but I'm taking a heavy beating mentally. The most challenging moments are dusk and mornings just after waking up. There creep the worst thoughts of any day: anger, 'why me', mediations about my...
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