ftd

  1. T

    Could it Really Be?

    First off, my story... I’m a white, 29 year old male, and in the middle of December I started developing headaches. The headache was so intense I had to go to the ER at UAB in Birmingham, AL. They found a “small” vascular benign lesion in my left frontal lobe. The neuros sent me home and just...
  2. Lkaibel

    A Long, Slow Downhill Roll...

    My husband called me up today at work and said that he was not going to be able to let our housekeeper in because no matter how he tried he would not turn the doorknob. He DID end up getting the door open. A Life Alert is coming our way, and that will have a key box on the front of the door and...
  3. L

    Just found out my birth family suffers from C9 gene mutation. Please help!

    Hi, I was adopted when I was young and did not know my full medical history. I just discovered that the C9 mutation runs in my family. Over the last 4 years, 3 people have died from this - my uncle and aunt from ALS and my mom from FTD. I am unsure if anyone else is currently affected in my very...
  4. BlsdMama

    ALS/FTD and fungal skin rashes

    Is there a connection? My grandma had FTD. I remember before things started getting bad how it started and then began to spread and get really bad. The itching was intense. I've had a rash for about two weeks and was putting an anti-fungal on it. Went to Urgent Care yesterday and she said...
  5. T

    Familial ALS?

    Hi all, Thank you so much for taking time to read and respond. I️ really appreciate it and all this forum does. I have a question about familial als. My mother in law passed away from als at 57 after a 6 year battle with bulbar als. At the time it was determined that hers was sporadic. For...
  6. S

    Mom with FTD and ALS

    Hi all, my name is Mari and I'm Finnish. I lost my mom to ALS on Nov 17th. She had an Alzheimers diagnosis on July 2017 as we took her to memory tests as she didnt seem to remember everything as normal and did not cook or do gardening anymore nor cleaned the house as usual. She was diagnosed...
  7. S

    Hi from Italy

    Hello, I'm a Finn living in Italy and I lost my mom to Als November 17th 2017. We got the diagnose 1 day before she died. It is a long story and I will share it at the FTD and ALS section as it belongs there. Thank you for the active forum, I've spent a lot of time here after my mom passed away...
  8. Tedstehr

    FTD and ALS

    My father-in-law died of FTD/ALS shortly after my diagnosis of ALS. We knew he had FTD, but had no idea about the ALS until I started researching the disease. When I found this sub forum, I strongly suspected what had happened. My father-in-law, Yan, was an incredible man. He was a GP and...
  9. L

    Doctors opinions on tracheostomy?

    My husband gets seen by the VA but they sent us to UT Southwestern to the pulmonologist to get a sleep study and orders for a cough assist and Trilogy. They are also the ones who are going to do the PEG tube. We had our first appointment there a couple of days ago. Towards the end of our...
  10. tripete

    More than I can bare

    I am tired. My wife tells me that I have been yelling, snapping, and mean to her. I don't remember any of it and she says she knows that it is not normal for me. Do you know that you are emotionally out of control with FTD? I can't stand living like this (physically and emotionally) this...
Top