slow progression

  1. C

    Old CALS-new to forum

    My name is Claire and I am the 0ld (82) caregiver for my husband. He is 87 years old and was diagnosed at Johns Hopkins in 2012 of bulbar ALS. He is a veteran of WW11 so we have help with medications, etc. His symptoms started when he was 80 and has been a slow progression. In November of 2014...
    • CiCi
    • Thread
    • als bipap breathing bulbar bulbar als cals caregiver clinic diagnosed fell food hip hope night peg progression slow progression swallow symptoms veteran
    • Replies: 7
    • Forum: Current caregivers
  2. H

    So alone, need advice

    I was diagnosed with bulbar onset in June,2014. It is slow progression so far, but is getting worse. I still have use of arms, hands and legs, but can't talk and have to use peg tube for 90 percent of nourishment. I've been having more and more choking and breathing problems, especially in the...
    • harlo
    • Thread
    • advice als breathing breathing problems bulbar bulbar onset choking clinic diagnosed onset paralyzed peg problems progression slow progression tongue
    • Replies: 16
    • Forum: People with ALS (PALS)
  3. B

    Alternative Methods

    I've spent a fair bit of time reviewing the info at ALS Untangled, and from what I know, it's a reputable site for PALS re: alternative methods of treatment. The site dismisses most of the remedies out there, although does suggest that "further research" is warranted on some items - for...
    • bear1973
    • Thread
    • als cannabis coconut oil increase info oil progression research rilutek slow progression treatment work
    • Replies: 75
    • Forum: Research and trials
  4. Mtzu

    Tudca?

    I'm wondering if anyone here has heard of taking Tudca to help slow progression. It was mentioned to me by someone who works with Augie's Quest. She told me that she heard about it from one of the people working at ALS TDI. I've asked for additional information. This is a link to a study I...
  5. 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
  6. J

    Does anyone know if Jals is any different?

    Like the symptoms and progression? I've had problems since I was 11. But I just kept ignoring them. But lately it's kind of gotten bad. Likely my calves are very hard and tight and I'm sedentary but young and my mom's family is very toned/muscular but it hasn't really a problem until a few night...
    • Justhavequestions21
    • Thread
    • als cramping cramps diagnosis disability familial familial als family life muscle night problems progression reading running slow progression swallowing symptoms voice wheelchairs work young
    • Replies: 10
    • Forum: Could this be ALS?
  7. affected

    Resource If you've just been diagnosed - what to do now?

    This diagnosis is worse than having a bucket of ice water tipped over your head. The detail of this sticky can be summarized by these steps which are not necessarily in the same order for everyone: 1. Absorb the shock 2. Find support systems 3. Tell people as appropriate 4. Put legal affairs in...
    • affected
    • Thread
    • anger diagnosed hours information manual muscles person with als possible a pwc rapid progression reading risk slow progression software supplements trip unknown young
    • Replies: 1
    • Forum: Resources
  8. A

    I am, unfortunately, joining this group...

    Hello All, Unfortunately, a few weeks ago, I was diagnosed with ALS. It has been nearly 2 years since my symptoms started, very subtly in my right at first. I am 33 years old with a wife and a 5 year daughter. We are confident in my diagnosis, as I trust my doctors and we basically...
    • adamfwilson
    • Thread
    • 2nd opinion als arm clinic diagnosed diagnosis early family fingers free hope ice love motor neuron symptoms progression questions reading slow progression symptoms work worry
    • Replies: 14
    • Forum: Newly diagnosed
  9. F

    Nuedexta

    Has anyone with bulbar onset had any success with Nuedexta used to slow progression and help with speech and swallowing?
  10. F

    Sorry to be back

    So I'm sorry to be back, but if you recall, my husband started with 1 bicep twitch in July, progressed quickly to constant, symmetrical large muscle group twitching 24/7 by August, saw a neuro in September who initially thought benign, but after MRI (clear) he ran in office EMG (carted in - no...
    • findinghope
    • Thread
    • als als? back confused emg fear mri muscle muscles problems progression scared slow progression twitch twitching weakness
    • Replies: 6
    • Forum: Could this be ALS?
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