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

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.net/FTDPlanning... 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.

Пікірлер: 91

  • @MsMidwestInvasion
    @MsMidwestInvasion11 жыл бұрын

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

  • @juliehill4062
    @juliehill40626 жыл бұрын

    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

    6 жыл бұрын

    Julie Hill Good luck and be strong

  • @DreamsOfFinland

    @DreamsOfFinland

    6 жыл бұрын

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

  • @tracysmith245

    @tracysmith245

    9 ай бұрын

    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

    4 ай бұрын

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

  • @FTDPlanningForHope
    @FTDPlanningForHope12 жыл бұрын

    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

    9 ай бұрын

    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

    5 ай бұрын

    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!

  • @mistymojones9280
    @mistymojones92809 жыл бұрын

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

  • @JohnTurri

    @JohnTurri

    9 жыл бұрын

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

  • @superhumanryze
    @superhumanryze5 жыл бұрын

    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

    3 жыл бұрын

    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: kzread.info/dash/bejne/aYSbpJOhdtydk7Q.html

  • @johnmartinsen963

    @johnmartinsen963

    9 ай бұрын

    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 🙏🙏🙏

  • @dollface8019
    @dollface80198 жыл бұрын

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

  • @fishfingers3024
    @fishfingers30245 жыл бұрын

    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.

  • @DouglasHowey
    @DouglasHowey9 жыл бұрын

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

  • @bezaleel3399
    @bezaleel33999 жыл бұрын

    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!!!

  • @newarkman2663
    @newarkman26632 жыл бұрын

    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

    9 ай бұрын

    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 🙏🙏🙏

  • @seankelly5223
    @seankelly52235 жыл бұрын

    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

  • @souvikdas1

    @souvikdas1

    3 жыл бұрын

    Sorry I'm late, but how are you?

  • @t-10heavytank57

    @t-10heavytank57

    3 жыл бұрын

    @@souvikdas1 Hope he's alright...

  • @souvikdas1

    @souvikdas1

    3 жыл бұрын

    Let's hope so...

  • @annemt
    @annemt8 жыл бұрын

    Thank you for this documentary!

  • @kdeann81
    @kdeann8111 жыл бұрын

    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.

  • @GraceTransitions
    @GraceTransitions12 жыл бұрын

    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.

  • @bethtenhave4883
    @bethtenhave48836 жыл бұрын

    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

    5 жыл бұрын

    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?

  • @TracieDickson
    @TracieDickson12 жыл бұрын

    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.

  • @ltg102
    @ltg1028 жыл бұрын

    Susan Grant is such an inspiration.

  • @EnergyTreasures1
    @EnergyTreasures111 жыл бұрын

    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!

  • @astroqueen67
    @astroqueen6710 жыл бұрын

    Thank you for this informative video!

  • @MrThirumal
    @MrThirumal9 жыл бұрын

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

  • @hangontite2000
    @hangontite200010 жыл бұрын

    Living With Frontotemporal Disease is my favorite documentary

  • @kinky_Z
    @kinky_Z4 жыл бұрын

    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

    Жыл бұрын

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

  • @johnmartinsen963

    @johnmartinsen963

    9 ай бұрын

    @@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 🙏🙏🙏

  • @sunshinesheila9
    @sunshinesheila98 жыл бұрын

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

  • @johnnyadriel4651

    @johnnyadriel4651

    5 жыл бұрын

    Ml

  • @OsoMarcol
    @OsoMarcol6 жыл бұрын

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

  • @szqsk8
    @szqsk88 жыл бұрын

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

  • @DreamsOfFinland

    @DreamsOfFinland

    6 жыл бұрын

    esp if you are female.

  • @katherenewedic8076

    @katherenewedic8076

    3 жыл бұрын

    And psych meds make things worse

  • @ronalddonner3396
    @ronalddonner33963 жыл бұрын

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

  • @wxwxw8800

    @wxwxw8800

    Жыл бұрын

    guess how... there still is not much treatment

  • @johnmartinsen963

    @johnmartinsen963

    9 ай бұрын

    @@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 🙏🙏🙏

  • @TracieDickson
    @TracieDickson10 жыл бұрын

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

  • @1970brenz
    @1970brenz5 жыл бұрын

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

  • @jbtmommy
    @jbtmommy8 жыл бұрын

    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

    8 ай бұрын

    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.

  • @cathrynm
    @cathrynm11 жыл бұрын

    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?

  • @sydneygregg6018
    @sydneygregg60186 жыл бұрын

    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

    6 жыл бұрын

    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.

  • @SparkingLife111
    @SparkingLife1114 ай бұрын

    So no advances since this was made 12 yrs ago?

  • @DreamsOfFinland
    @DreamsOfFinland6 жыл бұрын

    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

    Жыл бұрын

    There are anti-anxiety meds that are not benzos.

  • @johnmartinsen963

    @johnmartinsen963

    9 ай бұрын

    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 🙏🙏🙏

  • @sueweyland8884
    @sueweyland888411 жыл бұрын

    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.

  • @sarahfeldman1736
    @sarahfeldman1736 Жыл бұрын

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

  • @RANDYFULGHAM
    @RANDYFULGHAM10 жыл бұрын

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

  • @TracieDickson
    @TracieDickson10 жыл бұрын

    Hi Winona, I've emailed you. Kind regards

  • @kishinnorinku
    @kishinnorinku11 жыл бұрын

    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.

  • @sueweyland8884
    @sueweyland888411 жыл бұрын

    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

  • @deepblue1846
    @deepblue18467 ай бұрын

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

  • @user-hj7db3dl5w
    @user-hj7db3dl5w11 жыл бұрын

    like

  • @Francie-FontaineRiemann
    @Francie-FontaineRiemann7 ай бұрын

    😊

  • @laurah.160
    @laurah.160 Жыл бұрын

    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

    9 ай бұрын

    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 🙏🙏🙏

  • @edelcanavan9297
    @edelcanavan92978 ай бұрын

    Don't go near pharmacy drugs. Go natural

  • @stoicstrawberries

    @stoicstrawberries

    Ай бұрын

    to die faster ? lol

  • @retire14pattaya9
    @retire14pattaya9 Жыл бұрын

    Many of these people have some obvious weight issues.

  • @johnmartinsen963

    @johnmartinsen963

    9 ай бұрын

    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

    4 ай бұрын

    Meaning what??? So ignorant!!

  • @retire14pattaya9

    @retire14pattaya9

    4 ай бұрын

    @@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

    Ай бұрын

    @@retire14pattaya9this form of dementia is genetic tho 🤔

  • @MrThirumal
    @MrThirumal9 жыл бұрын

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