1. G


    My brother died last year 10/31/2017, from ALS w/FTD he was 56. His ALS started in 2012 with a small fasciculation in his upper arm. At the time he was a airline pilot, he went to the Dr. and was told it was stress related. The FTD was more of a problem than the ALS and he eventually lost his...
  2. M

    My PALS is getting a cold-help!

    My husband seems to be coming down with a cold and I have no idea what to do. This is the first illness he has gotten since diagnosis a year ago. He is on a feeding tube and a bipap at night (12-14 hours). Last time it was tested his breathing was around 50% (don't have raw numbers). He has a...
  3. Buckhorn

    Get back up, dust myself off, and start all over again.....

    So, here I am starting my own CALS thread. It's about time I stop hijacking the threads of others. I have little to say right now - its very late and I am very tired. But I realize it is high time I start to ask my questions and post my thoughts on my own thread. My PALS (husband, Dave) is...
  4. affected

    New FYI guide

    Written for professionals, really for the CALS this is critical stuff to understand when they are dealing with cognitive impairment or even full blown FTD. I hope CALS find this helpful. I also hope that more tools are developed that can be used with the CALS to help figure out impairment...
  5. M

    New to BIpap Question

    My PALS received his Bipap machine yesterday. It is a Philips "Dream Station" Bipap S/T. It is from the VA, so we have added layers of admin when dealing with info etc. so I thought I'd ask here first. The respiratory tech who brought it said my PALS is to wear it at night only right now...
  6. M

    Lung Function Question

    My husband was diagnosed in May 2017, but we can look back and see symptoms that we didn't recognize in August 2016. He had his first ALS Clinic visit in June 2017. At that time his Forced Vital Capacity (FVC) was 3.9 and they said his lungs were great. It dropped to 3.6 in October and 3.3 in...
  7. Q

    Frontotemporal Dementia (FTD)

    I been reading a lot of ftd, I was hoping that someone can share personal experience of ftd, the early signs and the later stage with ftd.
  8. Q

    FTD/ALS - c9orf72

    My mother has ALS and has developed FTD. I read online that someone with FTD/ALS usually has the c9orf72 gene? And that gene is due to famillia? Please confirm because it is driving me nuts that I might get ALS in the future. No one else in my family has ALS and this past year I did not worry...
  9. J

    new treatments

    My husband died at age 60 from ALS with FTD in 2008. His brother died a few days ago. he was 66 and he had the same symptoms but was never diagnosed. Are there any new treatments for this?
  10. C

    Concerned - advice would be appreciated

    Hello, I come from an ALS family. My mother passed away due to ALS, so did my Aunt, and my Uncle passed away from frontotemporal dementia. I have never been tested but I would wager we are a C9ORF72 family. I have had a fasciculation in my right foot since about age 14. I am 22 now. It...