Frontotemporal Dementia at the Age of 29 | BrainTalk | Being Patient

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  • เผยแพร่เมื่อ 15 ธ.ค. 2024
  • Being Patient speaks with Dawn Kirby about the journey of caregiving for her daughter who was diagnosed with frontotemporal dementia at 29 years old. Dr. Brad Dickerson, director of the Frontotemporal Disorders Unit at Massachusetts General Hospital, joins us to discuss the diagnostic process and treatment of the brain disorder.
    Read on for the transcript of the LiveTalk: www.beingpatie...
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ความคิดเห็น • 23

  • @jaycee795
    @jaycee795 3 ปีที่แล้ว +7

    Excellent information. I was so impressed with Dr. Dickerson. His insight into FTD has been invaluable. My dad was not actually diagnosed with FTD. Rather late onset Alzheimer’s and a Hospice nurse added Parkinson’s. But my father seems to show signs of FTD. He is non verbal, psychological behaviors like OCD, and now has problems walking. Medications prescribed are Depakote, Seroquel and Trazodone at night to sleep. I too would like to know about the late stage of this disease. Thank you.

  • @jenniferrobinson1792
    @jenniferrobinson1792 2 ปีที่แล้ว +5

    I am 52, and I believe that I have FTD. I have inappropriate behavior in social and work settings. The changes are gradual. I noticed mood changes 3 years ago, and it has rapidly progressed since Dec. 2021. I told my friend that I am not the same person. I have my memories, but I am losing myself. My colleagues think I’m depressed. It’s worse.

    • @truthhurts3532
      @truthhurts3532 2 ปีที่แล้ว +2

      Your SO YOUNG, Seek out medical help asap‼😟

    • @MBT372
      @MBT372 2 ปีที่แล้ว +2

      Did you get a diagnosis?

    • @truthhurts3532
      @truthhurts3532 2 ปีที่แล้ว +2

      No, BUt, recently poor Bruce Willis did, and the poor guy is ONLY 67 yrs old.

    • @1houndgal
      @1houndgal 2 ปีที่แล้ว +4

      Try not to self diagnose this disease. You need a thorough medical workup. Try a university medical school.

  • @whereslaska
    @whereslaska 2 ปีที่แล้ว +7

    I'm just now recognizing that I could have FTD. 4 family members have gone before me. I was caregiver to two, Mom and Grandmother. I feel an urgency to get a diagnosis before I slip away so my children understand what they are dealing with. Just making appointments is so hard.

    • @bonnierobinson8684
      @bonnierobinson8684 2 ปีที่แล้ว +1

      I had one doctor tell me that she thought I had this after missing a few words on a verbal test. Being sent in two weeks to have a pet scan. Frankly she is seeing under extreme stress.

  • @misaeire
    @misaeire 3 ปีที่แล้ว +4

    Heartbreaking for such a young woman, and her child will never get to experience her as her mother, my impression is that she would have being a wonderful mom my sister aged 66 has just been diagnosed with ftd but prob caused by a vascular disease, may god be with u mom, 🙏🙏🇮🇪

  • @truthhurts3532
    @truthhurts3532 2 ปีที่แล้ว +5

    Dawn Kirby's story about her poor daughter is so HORRIFYING‼Last year, We streamed the movie "The Father" starring Anthony Hopkins..........It was HORRIFYING‼😭😭😭

  • @mariyahuwana7930
    @mariyahuwana7930 3 ปีที่แล้ว +3

    Hi. My father was diagnosed of ftd recently. The doc also emphasize that my father has hippocampal atrophy that lead to ftd. I wanted to know is it the hippocampal atrophy triggered the ftd or vise versa?? As i research i found out that ftd is hereditary. I wanted to know what are the chances that we will inherit the disease??

  • @hollymoore2907
    @hollymoore2907 3 ปีที่แล้ว +3

    Thank you for this valuable conversation. My mother has FTD and can no longer walk, even to pick up her feet is extremely difficult, I wish you would touch on this area. Is this late stage?
    Thanks for this website.

    • @DeborahKan
      @DeborahKan 3 ปีที่แล้ว +1

      Hi Holly, We are trying to get an answer for you. Please stand by....

    • @sierragold
      @sierragold 3 ปีที่แล้ว

      @@DeborahKan I would like to know this, too. My mother was just diagnosed with FTD, but I noticed symptoms years ago. My step father has been in denial, however, so all of her symptoms were minimized and/or attributed to other things. For example, she started shuffling about four years ago. I kept pointing out that her gait wasn't normal, but he would get angry and insist it was because she didn't like to exercise and had always had a more sedentary life. She started slurring her words around the same time, but he said it was due to not drinking enough water (!!!). Consequently, as he was her spokesperson at her doctor visits, this info was never presented in a truthful way to her doctor, so no diagnosis was actually made until just very recently-- only because these symptoms are no longer easy to hide. My mom can barely walk now. Very unsteady and just picking up her feet is a tremendous chore. She also can only take a few steps and is exhausted. She's already tripped and fallen once, and broke her right arm in two places. Fortunately, she is now accepting the wheelchair. She sleeps most of the time now.
      Most sites and TH-cam channels do not touch enough on how FTD can effect walking, IMO. Also slurring of words. I can barely understand what she is saying now, when/if she does talk. I would like to know how far along she is in this disease. I only get info from my step father-- I do not have access to my mothers doctors. I believe she is in the late stages as she is also 100% incontinent now, and cannot do anything like cook, clean, shower, drive, etc. My step father said that her doctors said it was "early stage", but I disagree. Would be helpful to have more info on this. Thank you--

  • @sherrymacaroni5916
    @sherrymacaroni5916 3 ปีที่แล้ว +3

    I so appreciate that you responded to one of my previous comments. My big question now is whether you could look into DrDale Bredesen's "The End of Alzheimer's"?

  • @joanneurbanowicz4994
    @joanneurbanowicz4994 หลายเดือนก่อน

    Anyone have woozy / dizzy heads heavy pressure head .feel foggy all.the time not heard of my symptoms of dementure but cant do anything stand because of my head pressures

  • @adelinemorin6777
    @adelinemorin6777 28 วันที่ผ่านมา

    My husband has short term Dementia He got Covid and lost his strength I had to put him in a Retirement Home I'm 80 bad back He would like to come home at time Is it bad to have him there Will his Dementia advance faster

  • @cofiking23
    @cofiking23 2 ปีที่แล้ว +2

    Got dementia from ciprofloxacin ear drops.

  • @sharonwhitbread4060
    @sharonwhitbread4060 ปีที่แล้ว +1

    I’ve ftd I’m only 52😮

    • @joanneurbanowicz4994
      @joanneurbanowicz4994 หลายเดือนก่อน

      So young am 75 think got dementure came suddenly 18months ago think vax woozy heads daily heavy heads poor sleep depressed anxiety foggy head

  • @joanneurbanowicz4994
    @joanneurbanowicz4994 หลายเดือนก่อน

    So no dizziness

  • @joanneurbanowicz4994
    @joanneurbanowicz4994 หลายเดือนก่อน

    So sad so.young

  • @delaneycarpenter2641
    @delaneycarpenter2641 2 ปีที่แล้ว +1

    She would’ve been a great mom