ftd

  1. V

    First ALS Clinic Visit

    Yesterday we had our first ALS Clinic visit. I think my PALS was overwhelmed by all of the people. He says he is very tired. He was diagnosed 3 1/2 years ago but was pretty much on a plateau until about 2 months ago when he seems to have fallen off a cliff. For the first 3 years his left...
  2. M

    Parent with C9 ALS

    Hi, My mom recently got diagnosed with ALS and tested positive for the C9 gene. I am going to get tested soon- I am pregnant and due in a couple of months now. But I just need to know either way. I am driving myself crazy thinking that everything is the start of ALS, but I know I am stressed...
  3. T

    Familial ALS continued

    Hello- For the backstory on this thread, please see the original Familial ALS posting. Perhaps a moderator can combine these two? We have received the gentetic testing results from my husbands brother, who had ALS-like neuromuscular degeneration combined with a family tree with many ALS and...
  4. B

    C9 carrier with possible symptoms

    Hello everyone! This ended up being a very long post so I I'm going to put a tldr at the end for those of you with limited energy. This is my first post here and as a c9 carrier I will likely be lurking around for a while as it is the most comfort I have found so far. I want to say thank you...
  5. L

    Flying free soon

    My husband who has ALS/FTD will be flying free soon and going home to be with his Lord and Savior, Jesus Christ. He was diagnosed in May of last year. He has pneumonia and his lungs are completely full. It happened in a matter of hours. He’s resting comfortably now but had a rough day...
  6. Nuts

    Never thought I'd be here...

    FTD was my greatest fear early on. Then I thought we'd escaped it. Now...not so sure. Memory loss...cognitive impairment (slow processing)_ and now full blow hallucinations and bad behavior. I've been told at least once to find someplace else to live. Im not taking the mean remarks...
  7. M

    Restless at Night

    My PALS was diagnosed in May 2017. He has ALS/FTD, feeding tube placed in May with continuous feed, Bipap starting in May at night, is all upper body and can still walk but will assistance. When he received the bipap he immediately adapted to it and slept twelve hours the first night. In fact...
  8. N

    C9orf72 Found on Family

    Hello to everybody, I haven't post in this forum for almost 3 years, but I still fight with my symptoms. To remind you my family situation, I am male, 42 years old. I have lost two uncles in the age of nearly 50 from ALS. They were brothers from my mother's side. Also her father(my grandfather)...
  9. Raja

    ALS+FTD on EDARAVONE for 6months.

    Hi friends, I am 62, from God's own country. Diagnosed with MND-ALS+(FTD??) in March first week, this year. There is no new stories. As usual, my neurologist put me on reluzole, edaravone, methylcobalamin, alpha lipoic acid,pyridoxine hydrochloride,D3, and some other supliments . Ok. I will post...
  10. Clearwater AL

    New cars...

    New cars… (For those bored... something to read.) :-) Fifteen, twenty and 30 years ago when I bought a newer or a brand new car after I signed the paper work and got the keys… I’d get in the car I just bought, happy with my purchase. I’d reach under the front of the seat and adjust the seat...
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