FTD - Planning for Hope: Living with Frontotemporal Disease, a 1-hr documentary film

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  • čas přidán 25. 08. 2024
  • From co-producers Susan Grant, an FTD patient, and her caregiver Cindy Dilks, "Planning for Hope" captures some of the most brilliant and passionate researchers exploring early diagnoses for this rare disease.
    Frontotemporal Disease or Dementia (FTD) has been misdiagnosed along with other neurodegenerative diseases that cause dementia in young people in their 40s, at the peak of their careers and in the prime of their lives.
    Most importantly, families have stepped forward in this poignant documentary to share their heart-wrenching stories of perpetual grieving, amidst financial struggles and caring for their loved ones.
    Sharing another aspect of hope, professionals explore financial and estate planning for FTD victims and their families.
    Today, there is no single known cause, treatment or cure for FTD. However, the film provides hope for the future as science is moving at a fast pace.
    This trailer introduces Frontotemporal Disease (FTD), a dementia second in prevalence to Alzheimer's Disease.
    You also may download a free eBook that accompanies this film, "Know the Early Signs of FTD" at www.slideshare.... that will aid you in recognizing the early warning signs of FTD and show you how to approach getting a diagnosis.
    Early detection matters.
    Know the early signs of FTD.

Komentáře • 100

  • @MsMidwestInvasion
    @MsMidwestInvasion Před 11 lety +24

    NOTHING in this world scares me more than dementia. Love and good vibes for anyone going through this.

  • @juliehill4062
    @juliehill4062 Před 6 lety +29

    Hi I have just had my diagnosis of Frontoltemporal Dementia this week after a two year battle. I have been tested for everything and anything. This has been mainly do to my age, I'm 49. Trying to have doctors listen to me and not just say that I'm depressed has not been helpful. I can now move on and try and enjoy my life as much as possible. As title says " it is what it is " I can't change it I and my family have to make the most of the time we have. Thank to the families for sharing your stories and letting others into your very personal lives. Julie

    • @OsoMarcol
      @OsoMarcol Před 6 lety +3

      Julie Hill Good luck and be strong

    • @DreamsOfFinland
      @DreamsOfFinland Před 6 lety +8

      try cbd oil. the pharmacy has nothing to offer,I have younger onset alz and cbd oil gave me years back.

    • @tracysmith245
      @tracysmith245 Před 10 měsíci

      make the most of it I can not do anything with what I have now have to look after family member dementia mine is more avoiding going outdoors not good when you have kids trying to learn what it will be like I do not get on with her as she dislikes me i try because of the kids more like mini adults now been draining already on my health mine is from thoat cancer normally only just found out the name of what i have they said the wrong thing for 10 years had a hard time saying i can not go om the garden or day on the beach my skin gets damaged. there is always someone worse of than you how bad it is keep yourself going

    • @user-de7gc3tb4j
      @user-de7gc3tb4j Před 6 měsíci

      I'm 57 diagnosed in 2o17,but I've always felt like It was pretty hard

    • @tazeeyore79
      @tazeeyore79 Před měsícem

      @@DreamsOfFinlandcbd or cannabis oil?

  • @superhumanryze
    @superhumanryze Před 5 lety +15

    This is by far the best documentary on FTD. I have been fighting these symptoms for a while now and it really is sad how short life can be and to have to live in this state of mind. I truly pray everyday that science will have some big break throughs to help us get help.

    • @superhumanryze
      @superhumanryze Před 3 lety

      ronald tanner I am now the most documented case by the Amen Clinic with 5 scans over 15 years. I am also the most improved case they have ever seen. My brain scans after 15 years of working with the Amen Clinic using frequency this past year: czcams.com/video/7PgB1hFy7cQ/video.html

    • @johnmartinsen963
      @johnmartinsen963 Před 11 měsíci

      Ever heard of Therapeutic Ketosis? Keto is not a diet, it is a metabolic state. It has been proven effective in treating many different mental and overall health conditions. Don't trust your physician, dietitian or nutritionist to understand the therapy...their training curriculum was developed by corrupt pharmaceutical and food corporations 😮 I'm praying this message inspires YOU to keep believing there is hope, have faith not fear 🙏🙏🙏

  • @FTDPlanningForHope
    @FTDPlanningForHope  Před 12 lety +19

    Thank you all for your very kind words. I truly appreciate your support and at the same time, I am sorry that you have to be in this situation. The PET Scans are vital in getting an early diagnosis. It is such a shame that I hear all too many times that patients are told to wait... in my case, I was first told it was job-related stress. I applaud you, tdickson71, for "jumping up and down" to get the PET Scan. We must listen to our bodies and then get the doctors to believe us!

    • @johnmartinsen963
      @johnmartinsen963 Před 11 měsíci

      Ever heard of Therapeutic Ketosis? Keto is not a diet, it is a metabolic state. It has been proven effective in treating many different mental and overall health conditions. Don't trust your physician, dietitian or nutritionist to understand the therapy...their training curriculum was developed by corrupt pharmaceutical and food corporations 😮 I'm praying this message inspires YOU to keep believing there is hope, have faith not fear 🙏🙏🙏

    • @markgentry6688
      @markgentry6688 Před 6 měsíci

      Good luck with that. Getting a self centered egotistical nurse practitioner or Dr know it all pill pusher to listen to the patient or spouse. Been there,done that!

  • @newarkman2663
    @newarkman2663 Před 2 lety +6

    I am a logical person. I am educating my kids in what could happen to me when I get older. I never thought of what I can do to prepare. This documentary gave me HOPE and guidance. Very well done thank you.
    Mark

    • @johnmartinsen963
      @johnmartinsen963 Před 11 měsíci

      Ever heard of Therapeutic Ketosis? Keto is not a diet, it is a metabolic state. It has been proven effective in treating many different mental and overall health conditions. Don't trust your physician, dietitian or nutritionist to understand the therapy...their training curriculum was developed by corrupt pharmaceutical and food corporations 😮 I'm praying this message inspires YOU to keep believing there is hope, have faith not fear 🙏🙏🙏

  • @bezaleel3399
    @bezaleel3399 Před 9 lety +5

    As a former financial planner, I whole , hardily agree with their comments on the need for Long Term Care from an Independent Advisor. Thanks for this great video!!!

  • @mistymojones9280
    @mistymojones9280 Před 9 lety +22

    My mother have FTD and I'm learning how to be a better care giver to her by educating myself on condition.

    • @JohnTurri
      @JohnTurri Před 9 lety +4

      My mother was just diagnosed too, she's 59. My thoughts and prayers go out to you and your family.

  • @DouglasHowey
    @DouglasHowey Před 10 lety +9

    Thank you for sharing this great coumentary. It is hard to live this way, but even harder when people do not understand.

  • @seankelly5223
    @seankelly5223 Před 5 lety +16

    I have Ftd, my 2 sisters have Ftd, one passed away at 56, I was told mine is slow going, is that good or bad, I currently live n a Nursing Home, in a cottage for younger onset Dementia, there are 14 other residents under the age of 60 living in the only cottage in Australia, I'm passionate that we need more cottages, as there are younger onset dementia people living in older units, which is not right

  • @dollface8019
    @dollface8019 Před 8 lety +11

    Hope to God there is a cure and God give each family a Blessing to sustain them

  • @GraceTransitions
    @GraceTransitions Před 12 lety +5

    Thanks for the information and the video. I had never heard of FTD prior to a few days ago...
    My husband was diagnosed last week. I am searching for information.
    The PET scan will be next on our list!
    You have treated this disease with dignity and I applaud you!
    My thoughts and prayers to all.

  • @fishfingers3024
    @fishfingers3024 Před 5 lety +5

    I’m diagnosed. It is terrible, I feel huge guilt putting my family through this. I never know how I will act. I am trapped in my house. 2 of my 3 kids just can’t understand, they think I should just be forgetful. I want to make it to their high school grad, then I have decided to take charge. No one believed me for so long I even had a brain biopsy. I still get lousy treatment.

  • @EnergyTreasures1
    @EnergyTreasures1 Před 11 lety +3

    What an incredible video. Gut wrenching and heart breaking, but an amazing and important insight into what FTD is all about. It's not just another form of Alzheimer's, and it is unfortunately common. Great education on the importance of planning, before the storm arrives! Thanks for your amazing and courageous work!

  • @TracieDickson
    @TracieDickson Před 12 lety +4

    As the people in this video, we had the depression, mid-life crisis type diagnosis from the doctors until I jumped up and down and go a referral to a speicalist. I still had to jump up and down for tests until we finally got a PET Scan which confirmed the FTD.

  • @bethtenhave4883
    @bethtenhave4883 Před 6 lety +7

    It’s tough if you have no caregivers, but you do have a young child who depends on you. So many of the questionnaires are aimed at carers or family members, but it’s possible to hide the worst (esp. the most embarrassing) symptoms from others, and with older children having left home, that’s not been so hard to do. But, in the meantime, I’m drowning...

    • @mirjanapucarevic2105
      @mirjanapucarevic2105 Před 6 lety

      I am 33 and take care of my mom who is now 64.She has this for 5 years.It's terrible! How are you?

  • @kdeann81
    @kdeann81 Před 11 lety +1

    Gosh this is great!! I wish my family had this documentary in mid 2000s. My Mother start showing signs in hear late 40s early 50s. and now as 65 is still holding on in her last stage. Thank you for the courage to have this documentary.

  • @astroqueen67
    @astroqueen67 Před 10 lety +3

    Thank you for this informative video!

  • @ltg102
    @ltg102 Před 8 lety +1

    Susan Grant is such an inspiration.

  • @annemt
    @annemt Před 8 lety +1

    Thank you for this documentary!

  • @kinkle_Z
    @kinkle_Z Před 4 lety +6

    We're beginning to see a connection between amyloid tangles in Alzheimer's and diabetes. In fact many researchers call it Type III Diabetes. Is it possible that insulin resistance along with exposure to bad, cheap seed oils is causing this too? Have patients tried getting into nutritional ketosis and staying there?

    • @mvr_excl
      @mvr_excl Před rokem +1

      Hii, do you still think this is the possible reason?

    • @johnmartinsen963
      @johnmartinsen963 Před 11 měsíci

      @@mvr_excl YES!
      Ever heard of Therapeutic Ketosis? Keto is not a diet, it is a metabolic state. It has been proven effective in treating many different mental and overall health conditions. Don't trust your physician, dietitian or nutritionist to understand the therapy...their training curriculum was developed by corrupt pharmaceutical and food corporations 😮 I'm praying this message inspires YOU to keep believing there is hope, have faith not fear 🙏🙏🙏

  • @MrThirumal
    @MrThirumal Před 9 lety +1

    thank you so much, its really helped me to understand the FTD.

  • @ronalddonner3396
    @ronalddonner3396 Před 3 lety +5

    It's been more than 9 years.Can we have an update on how they are doing?

    • @wxwxw8800
      @wxwxw8800 Před rokem +2

      guess how... there still is not much treatment

    • @johnmartinsen963
      @johnmartinsen963 Před 11 měsíci

      @@wxwxw8800 Ever heard of Therapeutic Ketosis? Keto is not a diet, it is a metabolic state. It has been proven effective in treating many different mental and overall health conditions. Don't trust your physician, dietitian or nutritionist to understand the therapy...their training curriculum was developed by corrupt pharmaceutical and food corporations 😮 I'm praying this message inspires YOU to keep believing there is hope, have faith not fear 🙏🙏🙏

  • @sunshinesheila9
    @sunshinesheila9 Před 9 lety +3

    good video, early diagnoses is important, but it comes on some so quickly that they are caught off guard, as are their family members

  • @szqsk8
    @szqsk8 Před 8 lety +10

    Depression and bi-polar are the "go-to" conditions when they can't quite figure out what is wrong with the patient..

  • @jbtmommy
    @jbtmommy Před 9 lety +4

    My brother in law was Dx'd with FTD at 42 and died at 44, supposedly from FTD. I am looking forward to watching this video and will be doing more research. Can anyone give me their opinion of onset to death in reference to time?

    • @briancantale2674
      @briancantale2674 Před 10 měsíci

      From what I understand, most with ftd don’t die from the dementia itself, but from health related problems, like pneumonia, or their body systems shutting down.
      I have a mother in law with what we believe is ftd behavioral variant.
      Psychosis, delusions, hallucinations being the main features with her. She has diabetes and eats nothing but junk food, candy, carbs. Next to no protein at all.
      She stays isolated in her bedroom the majority of the time.
      She has no insight into what’s happened to her.
      She thinks someone did this to her, that there are cameras watching her.
      She will get agitated and become aggressive. Throwing herself on the floor and wailing like a child who needs attention.
      Sometimes it seems like she’s on deaths door. Then the next minute she’s manic and full of energy.
      It really is baffling.

  • @hangontite2000
    @hangontite2000 Před 10 lety +2

    Living With Frontotemporal Disease is my favorite documentary

  • @1970brenz
    @1970brenz Před 5 lety +8

    Who came here because of the 60 MInutes story that just aired recently from CBS?

  • @TracieDickson
    @TracieDickson Před 10 lety

    I'm not sure why but I've only just seen your comment now. I hope you are doing really well.

  • @OsoMarcol
    @OsoMarcol Před 6 lety

    Almost 7 years since this film. What happened to Susan? Is she around. Love!

  • @kishinnorinku
    @kishinnorinku Před 11 lety +1

    these days, insurance coverage and financial planning...is that an indication of taking care of it by other methods since ins. and fp are most likely no longer a possibility, even for healthy folks? the end of this video sounds like a commercial.

  • @sydneygregg6018
    @sydneygregg6018 Před 7 lety +1

    I am taking care of my 79 year old mother who has FTD. In the past year she has attacked me 6 times. I was wondering if this is normal or just something she does?
    Any help much appreciated.

    • @OsoMarcol
      @OsoMarcol Před 6 lety +2

      Sydney Gregg FTP patients have a stage where they are agressive, specially to those who are caregivers. My mother is passing by that stage. She’s 70 and diagnosed with FTD 2 years ago.

  • @cathrynm
    @cathrynm Před 12 lety

    Hmm, I just read on the Lewy Body sites that Lewy Body dementia with the second most common dementia. Is FTD the second most common, or is it Lewy Body?

  • @deepblue1846
    @deepblue1846 Před 9 měsíci +1

    Cool now everytime I forget a word I’m going to lay awake that night thinking I’m getting dementia.

  • @SparkingLife111
    @SparkingLife111 Před 6 měsíci +1

    So no advances since this was made 12 yrs ago?

  • @DreamsOfFinland
    @DreamsOfFinland Před 6 lety +1

    one person in film claims they helped themselves with brain games and "anti anxiety meds". Benzo drugs make most other dementias worse. Maybe each of us has to figure out what helps our brain function as best it can.

    • @KristiLEvans1
      @KristiLEvans1 Před rokem

      There are anti-anxiety meds that are not benzos.

    • @johnmartinsen963
      @johnmartinsen963 Před 11 měsíci

      Ever heard of Therapeutic Ketosis? Keto is not a diet, it is a metabolic state. It has been proven effective in treating many different mental and overall health conditions. Don't trust your physician, dietitian or nutritionist to understand the therapy...their training curriculum was developed by corrupt pharmaceutical and food corporations 😮 I'm praying this message inspires YOU to keep believing there is hope, have faith not fear 🙏🙏🙏

  • @sarahfeldman1736
    @sarahfeldman1736 Před rokem

    Does that scare you? That has to be the most ridiculous question that someone could ask.

  • @sueweyland8884
    @sueweyland8884 Před 11 lety

    The comments at the end says " A Therapeutic support Group in Denver facilitated by a paid Licensed Child Therapist funding was found by Terencia Beauvais Nikl". It is at 55.

  • @TracieDickson
    @TracieDickson Před 10 lety

    Hi Winona, I've emailed you. Kind regards

  • @RANDYFULGHAM
    @RANDYFULGHAM Před 10 lety

    i think i have this in my left shouder--now i know a little more of what to do about it..

    • @Sashazur
      @Sashazur Před 12 dny

      I think you’re in the wrong video.

  • @sueweyland8884
    @sueweyland8884 Před 11 lety

    A Therapeutic Support Group in Denver facilitated by a paid Licensed Child Therapist funding was found by Terencia Beauvais Nikl" is noted at the time of 55:17-20

  • @laurah.160
    @laurah.160 Před rokem +2

    Last time i saw my mom she wasnt my mom. Its like she was possessed by a demon. I looked into her eyes and saw nothing!!!!

    • @johnmartinsen963
      @johnmartinsen963 Před 11 měsíci +2

      Ever heard of Therapeutic Ketosis? Keto is not a diet, it is a metabolic state. It has been proven effective in treating many different mental and overall health conditions. Don't trust your physician, dietitian or nutritionist to understand the therapy...their training curriculum was developed by corrupt pharmaceutical and food corporations 😮 I'm praying this message inspires YOU to keep believing there is hope, have faith not fear 🙏🙏🙏

    • @Sashazur
      @Sashazur Před 12 dny

      @@johnmartinsen963Please stop pushing this ignorant stuff.

    • @johnmartinsen963
      @johnmartinsen963 Před 12 dny

      @@Sashazur you better tell them over at Metabolic Mind because their success stories will definitely be debunked with a wave of your mighty broom handle.

  • @user-hj7db3dl5w
    @user-hj7db3dl5w Před 12 lety

    like

  • @edelcanavan9297
    @edelcanavan9297 Před 10 měsíci +1

    Don't go near pharmacy drugs. Go natural

    • @stoicstrawberries
      @stoicstrawberries Před 3 měsíci

      to die faster ? lol

    • @avalancheonmaui963
      @avalancheonmaui963 Před 12 dny

      Agreed, therapeutic ketosis as described on the Metabolic Mind channel beats and toxic pharmaceutical and addresses root cause rather than treating symptoms.

  • @retire14pattaya9
    @retire14pattaya9 Před rokem +1

    Many of these people have some obvious weight issues.

    • @johnmartinsen963
      @johnmartinsen963 Před 11 měsíci +2

      Ever heard of Therapeutic Ketosis? Keto is not a diet, it is a metabolic state. It has been proven effective in treating many different mental and overall health conditions. Don't trust your physician, dietitian or nutritionist to understand the therapy...their training curriculum was developed by corrupt pharmaceutical and food corporations 😮 I'm praying this message inspires YOU to keep believing there is hope, have faith not fear 🙏🙏🙏

    • @hollifieldk6749
      @hollifieldk6749 Před 6 měsíci +3

      Meaning what??? So ignorant!!

    • @retire14pattaya9
      @retire14pattaya9 Před 6 měsíci +1

      @@hollifieldk6749 no not ignorant.
      Obesity and metabolic syndrome diabetes ect. Are highly associated with dementia. SAD. standard American diet.
      This diet is the driver of most chronic disease. Are you eating that way perhaps?

    • @stoicstrawberries
      @stoicstrawberries Před 3 měsíci

      @@retire14pattaya9this form of dementia is genetic tho 🤔

    • @avalancheonmaui963
      @avalancheonmaui963 Před 12 dny

      @@stoicstrawberries genetics is not fate. You believe that nonsense?

  • @Francie-FontaineRiemann
    @Francie-FontaineRiemann Před 8 měsíci

    😊

  • @MrThirumal
    @MrThirumal Před 9 lety

    thank you so much, its really helped me to understand about FTD.