venting

  1. gooseberry

    reality check

    Having a moment tonight. Came home to a wheelchair/commode in the living room and a hospital bed in our bedroom. I am truly grateful for the help and I thought I was prepared...but I am not. It took my breath away. Clinic was not great on Friday and tomorrow we have the end of life issues...
  2. S

    getting frustrated

    Hello, I have preliminary diagnosis of PLS and am in the ALS research study in Miami. I am taking focalin to stay awake during the day and it has been increased several times, just recently to 15mg 2x daily but I feel nothing. I am still fall asleep during the day and feel exhausted. It's...
  3. D

    Gulf War Vet - No diagnosis - First Post - Venting

    Hello All - This is my first post. I have not received an ALS diagnosis, but due to my Gulf War Service/Syndrome I am deathly afraid of this disease. I feel like I have been showing very early symptoms for a few years now. Many of them may attributed to my Gulf War Syndrome, many point away...
    • DPain
    • Thread
    • als choke diagnosis disability early early symptoms eating family fatigue insurance life life insurance mri neurology no diagnosis pain problems reading reflex spasms swallowing symptoms tongue venting worry
    • Replies: 1
    • Forum: Could this be ALS?
  4. P

    Steve Gleason Act

    The President the Steve Gleason Act into law. A great victory for us. Now the stupid news I have had my Dynavox for 13 months and is Internet capable I just need the key to unlock it. But it appears I'm caught in a black hole and Dynavox will not provide the key. Does anything go right. Just...
  5. E

    MIP and MEP

    So Tom made it to another ALS clinic visit. I can't help but wonder if it will be his last, his next one is scheduled for October. His decline seems to be gaining momentum, but who knows with this disease. Anyway, I'm wondering if any of you get MIP and MEP tests done along with FVC. Tom's...
    • ECpara
    • Thread
    • abdomen als clinic decline diaphragm fvc health home health care hospice mip muscles night power power wheelchair pressure sleep tests trilogy venting wheelchair
    • Replies: 12
    • Forum: General discussion about ALS/MND
  6. K

    Increased Anxiety about my ALS Risk

    Ok so I'm a 23 year old male. And I know this thread may seem ridiculous. I have really really tried to not let my anxiety get the best of me and post the typical "Am I getting ALS?" thread, but after several months I've caved. I really hope I'm not offending anyone by sharing my possibly...
    • KenG
    • Thread
    • als arm atrophy back clinical dad diagnosis familial familial als family history fasciculations father genetic hope muscle muscles phlegm problems reading research risk saliva shoulder swallowing test twitches twitching venting weakness wrist
    • Replies: 7
    • Forum: Could this be ALS?
  7. C

    Anticipatory Grief and Death with Dignity

    Anticipatory grief is a real thing, yet there are no support groups for it. I have asked at a couple Hospices and their grief support groups are only for after the passing. Quickly, my mom is the one with ALS. Bulbar onset so she is still mobile, some difficulty swallowing but basically...
    • csabados
    • Thread
    • als angry back bed bulbar bulbar onset conversation death diagnosis fear friend frustrated grief helpful onset pain planning progression slow progression speech support swallowing ventilator venting wanted
    • Replies: 21
    • Forum: Current caregivers
  8. Prohobo

    Guilt

    I can't help but feeling guilty - massively so. We were so late in finding the diagnosis - even after 3 neurologist. It progressed so fast and I was blinded to anything serious. As it progressed quickly I was foiled at every turn: Took time to get certain meds, time to get a peg tube, time to...
    • Prohobo
    • Thread
    • als assisted living clinical clinical trial diagnosis guilt headache increase insurance medical medicine meds neurologist peg rant test therapy treatments trial venting volunteers
    • Replies: 8
    • Forum: Current caregivers
  9. R

    It's been two months

    My mother was diagnosed September 2012 and passed December 1 2014 at 11 pm. Although her official time of death is midnight, December 2... Which was my 25th birthday. She was 53 years young. This is the first support forum I had visited. I then found an ALS caregivers page on Facebook which was...
    • Renee24angela
    • Thread
    • als back boyfriend caregivers cell cry death diagnosed hope muscle story support venting young
    • Replies: 11
    • Forum: Past caregivers
  10. Nuts

    CALS sleep (stop laughing!)

    It is wwwaaaayyyy too early for me to be sleep deprived! I wake at least three times a night, which is very hard on me. I've always been an 8 hour a night sleeper. Oh boy am I in trouble! I wake when he has trouble turning over. He can do it, but it's difficult and he gets tangled, so I...
    • Nuts
    • Thread
    • back bed cals cry early equipment healing mattress muscles night pwc sleep sleeping pills surgery survey venting
    • Replies: 29
    • Forum: Current caregivers
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