als and ftd

  1. 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...
  2. 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)...
  3. L

    New here

    My PALS was diagnosed in May with ALS and FTD. Our family I had just been trying to digest the news. We’ve known something was wrong since the beginning of last year. The FTD started first and he didn’t get any physical symptoms until around Christmas when he started choking on liquids every...
  4. C

    Worried for my Husband

    Hi there, I was on here around 2 years back as i was concerned about my husband, just a quick round up of his symptoms, for the past 3 years my husband suffered from Muscle twitching, spasms, tremors, some degree of weakness and feeling tired and issues with his swallowing and speech. We have...
  5. D

    Als and FTD

    My husband has been diagnosed with FTD and a few months later we received a diagnosis from Barnes in St. Louis that he has familial ALS. His dad died 20 years ago with this horrific disease , and his sister died in 2014 of ALS. My husband has the repeated gene C9orf72 gene which links ALS and...
  6. H

    MOLST forms

    My brother-in-law sent me MOLST and DNR forms to review for my sister before we sign them, and I wonder if anyone has any insights or experience that would be helpful as we go through this process. My sister has ALS and FTD and is in Hospice care, so she is not capable of doing this for...
  7. G

    ALS with FTD

    Hi, I just wanted to see if there where any support groups for CALS who also have FTD. I am not sure if I myself have the right to share since I am not the caretaker, but my husband is and I would like to try to be able to help. My mother in law has ALS with FTD and we right now are trying to...
  8. C

    Speech and FTD

    I'm wondering what others have experienced in their loved ones as far as speech. My mom can't speak anymore but we started noticing significant changes about 4 months ago. She wasn't able to form coherent sentences anymore and would mainly only repeat the words "I know" and "Benny" (my dad's...
  9. L

    Help for my mother in Dallas Ft. Worth Area

    This is my first post. My mother is 65 and was diagnosed with ALS and FTD two weeks ago. We knew something was happening with her because little pieces of her were slipping away. The symptoms began in Nov. 2013. It started with upset emotions, moved to losing the ability to speak, then swallow...
  10. B

    Suggestions?

    Hello all, My father (Mike) was diagnosed with ALS and FTD on January 9th, 2014. Brief history: My father was making very poor decisions for the past few years which just didn't add up. In the beginning of June 2013 he began slurring his speech. We thought he had a stroke and took him to the...
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