My wife was diagnosed with FTD on September 28th. I found this searching on UA-cam and am grateful to hear these stories and saddened to know what lies ahead.
Praying for you, your wife and everyone who loves you. I am going to a neuro psychiatrist and getting evaluated for this. My life has been slipping away. I’m witnessing it but it’s like it’s not real, like I’m watching it. It hurts to forget who you are, but as long as I can hold onto the love I have for everyone I’m going to keep fighting.
@@curtisnucmed There is nothing to fight and all we can do is slow the process a little.my wife doesn't know whom I am anymore, but in the earlier stages, Cannabis brought back her most powerful memory streams.All dementia patients have low functioning Cannibinoid receptors and it worked well for a few years for my FTD diagnosed wife.I am praying for you to get through this, and also to remain healthy..
My 64 year old husband was just diagnosed on his birthday Feb 2nd. Right now I’m learning more about it as the doctors haven’t told me much of anything just that he has it. I will keep you all in my thoughts and prayers!
I can tell you one thing. The absolute hardest, most painful thing to experience is missing someone before they leave this world. It's such a strange otherworldly feeling because they're beside you, but they're so far from who they used to be that they might as well be in another galaxy.
Can u miss urself It's like I already dead but I'm still in the world of the living...And it's not like the "dead" feeling of depression...I look around at all these people and everything they are doing I will never be able to do...... I will never be able to comprehend it the way I did just before I "lost" myself,before the serious onset of the disease..... all the books and movies and music and anime I used to love greatly I will never be able to process or understand or experience it like I used to again...... all the feelings and emotions that they stirred in me and I felt so passionately and deeply..... All the thoughts and ideas and words that I could reach for and mold like clay,and spin and weave in unimaginable ways.....like a masterful tang dynasty instrumental artist.....like a wordslinger after Roland the gunslinger from Stephen king novels.... It's like the real me the real cognition the real conciousness that existed just not that long ago before Oct 2021 is just gone.....disintegrated.....and whatevers left of me... It's like the real u is gone.....but u don't know what u don't remember.....after all what is the real u but u being u? it's like the universe is cruelly mocking me after 10 years of depression I am whatever is remaining of my cognition is desperately trying to convince someone,a doctor something is seriously wrong.....
I did not know about bvftd until my behavior changed so much over the past few years, and rapidly the past few months. I don’t want to do anything. I can’t work. I am a stranger to myself, and a monster to everyone else. I’m full of rage.
Agree wholeheartedly. I lost my husband five years before he died. There's nothing that cuts as deeply as anticipatory grief, that mashup of sorrow and guilt.
My Dad had the loveliest personality. He made everyone laugh and the most mundane day to day tasks he made FUN! FTD took all of him away. He was a shell of himself. The man who was always laughing never laughed or smiled again like a light switch went off. All he cared about was his meals and sleeping for seven years. In the end he lost his speech but he never forgot who his family was..he just had no interest in us anymore. Very cruel disease.
My wife was diagnosed on 8-21-2020. This is the cruelest disease for not only my wife but all care for her, we are losing a little of her every day. Try to enjoy everyday and have patience, they do not know they are any different than they were yesterday, a month ago, or a year ago.
My wife has primary Progressive Aphasia. She was first diagnosed in 2018. She has tremors and non verbal. This video was hard to watch but I can say I am not alone. Thank you for making this video so others are aware.
AFTD is here to help! Call the HelpLine 1-866-507-7222 (toll-free) Monday through Friday from 9 a.m. - 5 p.m. ET or email us with a question at any time at info@theaftd.org.
We are on this journey at the moment with my 68 year old dad. It is heart wrenching to watch him deteriorate. His speech is declining, he walk has changed ( much slower) and has had a couple of falls. It was only the other day, I told him 5 times I love him, he just looked at me and walked off and that is OK. I hug him often and he hugs he back, pats me on the back. I would give anything to have him back again. A man of so wisdom, taught us as we were growing so much about life, he loved talking to people and people loved him. Such a horrible disease. I know see time is so valuable and every-time I see him, I make memories with videos and photos.
Thank you for sharing this video. This video is so apt! I recently lost my father to complications because of FTD. My father lived in India where it is even more difficult to explain people what dementia is.. let alone FTD. My father had a cluster of signs and symptoms described by these families. He had issue with finances, his speech, some obsessive compulsive disorders. His disease progressed a lot faster. He only lived about 2 years 4 months from his diagnosis. I hope we all can find a cure for this dreadful disease which takes away everything from the person and his family. I have so much empathy for the families who have gone through this awful disease. I miss my dad very much. He was a good dad but I almost didn't recognize him for the last couple years of his life.
I’m 59 and going to see a Neurologist, I asked my Dr a few times about Dementia and Frontal Lobe and also Vascular Dementia. It’s been a back and forth journey therapy partial hospital program medications 💊. I have had brain fog and TBI’s . A lot of what was said . I will see what the Neuro says.
The AFTD Helpline (1-866-507-7222 or info@theaftd.org) can provide more information on subtypes of FTD, give guidance on managing a new diagnosis, and help connect you to resources and support.
For those of us with the diseases, it’s like watching parts of yourself disintegrating daily and you are helpless to stop it and you are watching those you love suffer.
Thank you for creating and sharing this. So many families (including my own) have been affected by this 'invisible illness' and it's so hard to explain to others what we go through or how to identify warning signs in others.... Raising awareness is the way to go.
FTD is becoming more and more prevalent in our society. It is an area that we as a community need to advocate for as in having a diagnosis of Young Onset Dementia (under age 65), there is a huge gap in services that appears not to be recognized where the family unit is concerned, as well as for the person living with the diagnosis. For some, the devastation can reach far beyond the diagnosis; socially, spiritually & more importantly the impact on the family unit economically. Government, health services and community across the nations need to step up and make a solid plan to assist these individuals and families through this journey.
My dad has this. I was just sarting my senior year in high school when he was officially diagnosed. I'm 21 years old now and he is 53 now. He was 50 when he was officially diagnosed and had it 3 years prior to diagnoses. I'm honestly extreamly scared to loose him, I'm a daddy's girl and I'm scared he won't walk me down the aisle when I get married one day or meet his grandchildren. I would not be who I am today if it wasn't for him or my mom. I want him to see me graduate from college, I want him to walk across that stage me.
I only wish all these programs were available to me when my daughter had Picks fTD, Every day was like everyone of these family's experiences...so sad.
@@roxannbowker6052 I often feel like I am living in a horror movie,but as my daughter says that makes these kinds of movies."There is always a survivor in them."Please make sure that survivor is yourself,so take care of your needs as well.Eat,sleep, and try to create some joy in your life as it is a sorrowful journey.You aren't alone in this as I am suffering in the same way, and feel for you as well.
thanks for sharing sad but brave stories of the family suffering from FTD. I recently found out that my closest friend's father was diagnosed with FTD and I really feel sorry for his family and trying to find what I can do to them. Since it's not a well known nor it is a treatable disease, not many people know how devastating this could make one's life. (Maybe not even the caregivers, at first.) I myself also wasn't aware of this disease until my friend told me how horrible it was. Especially where I am from, information is even scarce and it is often confused with general dementia. If you allow, I would like to make subtitles in Korean of this video so they can share or at least they don't feel they are alone. Jin-Hee from Korea
The part where the boys were reading a body book put me in tears. I feel for all of these families, as well as the children that are losing or have lost a parent to it. I take care of a woman who has picks FTD. It runs in her family; all of her siblings had it, except for a younger brother (at least for now). Currently, an older brother is immobile in a facility. I believe one or both of her parents had it as well. My grandma passed from dementia last year on her 75th birthday. I didn’t get much time with her so I don’t know what kind of dementia she had exactly. I’ve been learning a lot more about the condition since becoming a caretaker this past March 1st.
My mom was diagnosed with FTD yesterday- we've watched her decline fir years and we were told it was anxiety as well- now I know she can't help it and I have so much guilt... she's not going to be with us for much longer and that's a hard pill to swallow. She's 59.
We're so sorry to hear of your mom's diagnosis, Shauna, but we're glad that you found AFTD. We have resources and support available to guide you on the FTD journey. Be sure to visit our website: theaftd.org, and know that our HelpLine is available to you and your family by both phone (1-866-507-7222) and email (info@theaftd.org).
absolutely heart wrenching and tragic. It could happen to any number of us. for about 6 months I have had auditory hallucinations and just a general flatness emotionally. That state would pass but returns more often these days.
My dad got diagnosed with early onset Alzheimer’s initially- it was scary and eye opening. Then the diagnosis changed to FTD- I never thought I would be praying for it to be Alzheimer’s. I am going through the first stages of acceptance and grappling to find a clinical trial to put my father in- the doctors predict 1-3 years until complete degeneration. I can’t fathom how to go on from here.
Good morning, Nia. As you face your father's diagnosis and the FTD journey in front of you, we wanted to make sure that you're aware of the fact that FTD support groups exist throughout the country. Many in our community have found encouragement, support, and understanding through joining a support group. Here is a link to the support group locator tool on our website: www.theaftd.org/living-with-ftd/aftd-support-groups/
@@niadimitrova4112 we also host a closed Facebook group for individuals and families impacted by FTD, and invite you to join us there. Many community members who are geographically isolated or otherwise outside the reach of support groups have found the relationships and connections they forge there to be an invaluable resource: facebook.com/groups/52543721114
life is about balance. i am awaiting diagnosis. have limited support. AM declining in motor symptoms now walking and talking. in dementia your brain doesn't have balance... my family don't believe me. I am fighting every day. i have had the diagnosis of depression and anxiety. i need help doing basic things. everything you take for granted...gone. am so weak and tired of this suffering.... its a death sentence i only have love. love never ends!!
In my COuntry the doctors said that loss is not the right word That patients are still people before the disease and that this sickness teaches people about humility as well as understanding
This is so sad and now i just found out that one of my dearest cousins has this disease. Everyday will be sadder as he says his goodbyes to his wife and children. He attended his daughter's wedding this last week Thank God he was able to do that. I truly believe some of these diseases are caused by things that are in our food and environment. Being retired from the medical field after 47 years i don't remember any of these types of problems happening to people years ago.
Have been diagnosed with FTD about 8 years ago. Fortunately my progression has been slower than most although about a year and a half ago I moved with great difficulty and a four-wheeled walker and totally lost the capability to MUTE. Couldn't even make sounds. Luckily after about six months like this a sudden change happened and I reverted to the condition I was in about six months before my low point. Now it's ups and downs with both becoming progressively worse. What isn't being mentioned in many stories that the ENTIRE BODY not just the brain, is degenerating. It is the brain after all that controls our ENTIRE BODY not just what you can see hear touch, etc. Heart, lungs, GI system, EVERYTHING is slowly degenerating. talk about going TO HELL IN A HAND BASKET!!! Goodbye for now. I feelworst for those around me.
Gerry, thank you for visiting our UA-cam channel, and for leaving a comment to share your own personal experience of FTD. We're so sorry to learn of your diagnosis and the progressive physical challenges it has presented. The unpredictable nature of the symptoms of FTD and their progression is just one way in which this terrible disease takes such a toll on persons diagnosed, as well as their caregivers, family members and friends. Here at AFTD we are working every day to create and provide resources - including our "It Is What It Is" film - that raise awareness of FTD, help the general public to understand the full scope of the disease, and facilitate additional research aimed at determining its causes. We also provide resources for persons diagnosed and their care partners, and encourage you to visit our website to learn more: www.theaftd.org
Have you considered adult stem cell treatment? I realize it is not FDA approved, but many great supplements are not FDA approved either. It may be worth a try.
Raymond P. Kot II, Esq There's a reason its not approved, its because there's no proof of its safety and/or efficacy. These experimental 'treatments' are just taking advantage of the despair for money. There is a huge snake oil business of this kind of practice with cancer. When the treatments stop working, the patient or caretaker is willing to do anything and take any chance. They soon depart with their money and then their life.
I was diagnosed at 46. I said to my wife what I should do, she said get up each day and enjoy it. That’s what I do, I love my kids and every day with her. I’ve had terrible doctors, one told me there was nothing wrong with me because I had make up on. We have also dealt with terrible homophobia, I wonder if they care if I’ve been married for 25 years and have 3 amazing kids. I am sliding down faster and strangers think your joking if you tell them you have dimensions because of your age. Keep advocating, keep loving. I am going to use assisted suicide when the time comes. I feel this need to still be a small bit of me when I die, but I’m not leaving because I want to. P.S. My specialists told me not to come any more even though I have severe tremors, speech, falling, numbness, choking, scarring, passing out + much more. The medical system needs more understanding and research. Understanding and love to everybody fighting this battle💗
I'm only 32 and I think I have FTD dementia......can anyone help? And I think it might have been undiagnosed for a long time.... I might have approached a serious stage of the disease....things might have progressed rapidly last two years and I became worried when alarming signs appeared this year.....I'm starting to have serious problems with my memory,it's like I can hardly remember memories from my past.....my short term memory feels much weaker and significantly declined too,a lot of my vocabulary seems to be gone and I have trouble constructing sentences in my mind..... I always felt like I was a pretty creative writer/person not professional though but now it seems like I can't think of anything anymore like my mind has lost all its depth and creativity and nuance and abstraction....it's like my mind is just a tight ball of emptiness,like it doesn't even know itself anymore,like it doesn't even know what it doesn't even know. And there are all these weird stuff.....like a serious loss in sex drive in the last 2 years......like I had no attraction to the opposite sex.....and people just seem like people to me.....it's like I have no thoughts about anyone,no biases no prejudice no preferences no racism or anything that people might think of when they see all kinds of people on the street.......I have no preferences and no idea what I want when I am looking at food and drinks in a shop......and I lost alot of my higher cognitive function......I love reading I used to read novels like I know this much is true by Wally lamb.....tomcat in love by tim o Brien....a beautiful mind.....wicked the life and times.....etc etc.....but something is seriously wrong.....my mind struggles to hold 2 or 3 sentences now and grasp the meaning.....And top it off...I suffered from severe depression for more than 10 years in my life and binge ate alot what they said were symptoms of FTD......I'm literally struggling like the lady at 4:35....And my math skills has atrophied alot.....when I was a kid I used to take mental abacus,I attained the highest or second highest level where u had to do 2 digit by 3 digit calculations mentally without using a cal..... obviously,I have not been doing it that much the past twenty years but I still do some calculations mentally now and then and was pretty sure I could still do 2 digits by 3 digits just that it took a longer time.....until recently I was shocked when I was asked to deduct 7 from 100,My brain like skipped for a min,it kept thinking if I subtracted 7 I had to take away ten and add 4,for some reason my brain thought 10 minus 7 was 4......I had to really focus and do every subtraction carefully and slowly,its like it forgot the multiplication table that kids learn in primary 1....I recovered a few days later and could do 2 digits by 2 digits again but it was extremely extremely difficult and took me forever.....it's like my brain couldn't hold numbers or couldn't picture the Sigh....can anyone help me?pls I literally might be wasting away from a and here I am desperately trying to convince the world someone that there is something Seriously wrong with me...wIth the symptoms so obvious I obviously am suffering from the disease yet the doctors all say they don't find anything.....they say a ftd diagnosis usually take years.....I don't even know if I will still be self aware by then..... If someone can help me.....pls email or Skype me at frenchbriefs@gmail.com.
Good afternoon, Jon. Thank you for taking the time to watch "It Is What It Is" and to leave a comment. We are sorry to hear that you are concerned that you may be displaying symptoms of FTD. We would encourage you to reach out to your doctor to begin exploring your symptoms and seeking a diagnosis. You may find helpful information and resources on our website to present to your doctor, if they are not familiar with frontotemporal degeneration. The "For Health Professionals" section of our website is specifically geared toward acquainting professionals with information about the clinical presentation and diagnosis of FTD: www.theaftd.org/for-health-professionals/ You can also check our website to see if there are any FTD-oriented medical centers in your area. Just select your state from the drop-down menu, and then expand the section titled "View Medical Centers": www.theaftd.org/get-involved/in-your-state/ Finally, you can always reach out to AFTD's HelpLine by telephone (1-866-507-7222) or email (info@theaftd.org) to speak with a trained member of our program staff about your questions and concerns.
This just. Rip's my heart out!! :'( FTD took my father at the age of 42 & I now care for my aunt who is bed ridden , stiff and rigid, nonverbal and absolutely motionless not to mention the uncontrollable seizures some days she may just have 1 & then there's the nightmare days They come one right after another ! To anyone who has a loved one or caring for a loved one with FTD my heart goes out to you ❤🙏 I can't bring myself to be checked for this genetic, I don't think I could live with myself knowing this would be my outcome, I don't want my family or my children to be forced with a burden to put their life on hold to care for me or see me go through anything my father and my aunt have & is enduring, the heartache the pain the questioning the mad the why's to this disease it's never ending !! This is my biggest FEAR😥
I’m exhibiting early signs of this disease. I’ve lost a great deal of who I was. I am working on seeing a neuro psychiatrist for diagnosis. I’ve cancelled a few times because it feels overwhelming to even get out and going and talking about it. But I’m going to go this time. I know it’s important to those who love me.
this is so hard to see and hear , but I have to learn since this sounds so much like they have not told us just yet.. I guess i'll hear something in 2019.. ( I miss my old mom)
Sonia Martinez my heart goes out to you & your family . I know your heartache & pain all to well, my father was only 42 when he passed away FTD & his sister is now in the end stage of FTD , It is truly a living nightmare knowing this is genetic & there's a 50/50 chance my life or even my children's lives could be stolen just the same 😥 I pray that God be with you & your family and give each of you the love, strength & peace in your hearts to face each day .
I can't believe and experience tells me there isn't a set time scale from fld to death as can clearly realize symptoms were there for over 15 years before the problematic ones that lead to diagnosis arrived and that was in 2013 2 years after I first said mum isn't right and she still is physically strong, has moments when the DRUGS aren't having effect that she is herself but thé self knowledge at that time is the most heartbreaking. It's more likely that we will all die from physical exhaustion or mental stress and anxiety before she will. No one can say oh when this happens that means end of disease etc just have to take each new symptom or progression of one and keep managing and going. Forgive yourself for being angry at their lack of understanding of what we r going through and their own self consideration and forgive them for being sick with this disease and who it makes them bé. We were told that not like other dementia but there are moments she forgets who we are or what stage in her life she is living but never lasts unlike main symptoms. It's actually those times where we find amusement from this awful disease and it's effects on us àll. Think it's called dementia cause it makes every one demented not just the sufferer
My husband was first tested in 2013, reports were told us as memory issues but not given a name of FTD until 2015.He was just re tested this month and it has worsen I am noticing many more changes. I am not sure if he really needs to know what all could happen to him. He knows its FTD but not aware of all that occurs. Not sure if he really needs to be told and if he will understand it.
HI, Sharyn. Thank you for reaching out- we are very sorry to hear about your husband's diagnosis and subsequent decline. Each person's experience with FTD is unique, but you can always ask questions and seek information/support via our HelpLine. You can reach the HelpLine by phone: 866-507-7222 or by email: info@theaftd.org.
Hi Josh. We're really sorry to hear that you're struggling. It's important to remember that you're not alone. If you need someone to talk to or support, our HelpLine is here for you. Reach out to us at 1-866-507-7222 or info@theaftd.org.
Good afternoon, Gary. For more information about the signs and symptoms of FTD, you can visit our website: www.theaftd.org/what-is-ftd/disease-overview/ If you are concerned that you may be exhibiting symptoms of FTD, you can also use our website to locate FTD-oriented medical centers near you: www.theaftd.org/what-is-ftd/research-and-medical-centers/
Please research Dr. Dale Bretesen, researcher and physician. He has founded a protocol that is explained in his book, Reversing ALZ. This is a Functional Medicine approach that identifies and treats the root cause of diseases.This is what we are using with my husband who was diagnosed with FTL in 2017. We have seen good improvements. His constant confusion is gone. His short term memory is back. We have not been able to improve his cognitive function so apparently that area is already effected. I was very touched by the partners who are learning to take care of themselves now for the time they will be alone. This is what I am working on too. I've taken over the bills, the selling of our hobby farm the buying of our new condo. I am preparing myself for the future when I will be alone.
Donna Allgaier-Lamberti I recently purchased this book and in the process of reading. My partner was diagnosed in June with a rare FTD. Its name is right temporal lobe variant. She is experiencing symptoms that are usually experienced in left frontal lobe which remains virtually untouched. Strange. Question: how is your husband currently doing? Still noticing a slowing of the progression? Thank you.
Jim , I'm so very sorry it is the most difficult thing I've ever had to endure in my life holding my father's hand as he passed at the age of 42 and now I gracefully hold my aunt's hand as we deal with this disease yet once more :( God Bless you & Your wife!!
My daddy died of this disease in 2009 at the age of 89 after being diagnosed ten years earlier. He probably had symptoms a couple of years prior to that. At the time adult stem cell treatments were not common knowledge nor where there many uses for them. While not FDA approved, can adult stem cell treatments using one's own stem cells turn this disease into a chronic disease? Certain supplements are known to prevent or at least substantially reduce the occurrence of Alzheimers Disease. Turmeric with black pepper extract comes to mind as a very important disease preventing supplement. While Alzheimers is now thought to be caused or at least triggered by one or more viruses, Picks Disease / FTD family of diseases lags in research spending and knowledge. If my father was diagnosed today I would take him for adult stem cell treatment and learn as much about alternative medicine as possible (which I started doing after his death for myself, my mother and others).
Impossible to know, but probably not. Its a degenerating disease that slowly destroys your personality and self. If youve ever had a mood swing, imagine being like that permanently. Just an example. How would you know of any better when youre a prisoner of your own mind and hormones. Like stroke patients who think theyre speaking perfectly fine, but nothing but gibberish is coming out of their mouths.
If I got this horrible disease, I would take my own life where it looked like an accident before I put my family through that. I could not bear going through eternity knowing that their memories of me, was a man who had deteriorated down to a shell. I would willingly risk GODs wrath, than my wife of 28 years & children suffering that horror for days months and years. I do not think God would hold it against a man or woman who knowing the end, chose a different path. Sorry, but this disease is just beyond horrid to me. Those poor people robbed of their very heart, mind and conciseness through no fault of their own... Jesus that is just a nightmare!
You might ask your loved one which one they would rather have, losing you now or some years of being with you in your illness. My wife has a variant and, as difficult as it is, I live to make her as happy as she can be and we are happy together.
I used to say that - before I got dementia. I am married and have 3 sons and 5 grand children, I would never leave them with my killing myself. My brother committed suicide, I know what it feels like - it's horrendous
Sad. Its interesting tho. How fast it advances. I can't remember names, or get my pronouns right. Bad car accident, then later, a nasty fall. You just don't know what is around the corner of life
Some times I haven't eaten all day, and I think. "You don't need to eat because you are already dead." This disease opens up such a long corridor between living and dying. It is just too much to ask. I just want to set them free.
Thank you for making this movie it’s very helpful to understand what is happening to my sister.
My wife was diagnosed with FTD on September 28th. I found this searching on UA-cam and am grateful to hear these stories and saddened to know what lies ahead.
Praying for you, your wife and everyone who loves you. I am going to a neuro psychiatrist and getting evaluated for this. My life has been slipping away. I’m witnessing it but it’s like it’s not real, like I’m watching it. It hurts to forget who you are, but as long as I can hold onto the love I have for everyone I’m going to keep fighting.
@@curtisnucmed There is nothing to fight and all we can do is slow the process a little.my wife doesn't know whom I am anymore, but in the earlier stages, Cannabis brought back her most powerful memory streams.All dementia patients have low functioning Cannibinoid receptors and it worked well for a few years for my FTD diagnosed wife.I am praying for you to get through this, and also to remain healthy..
My 64 year old husband was just diagnosed on his birthday Feb 2nd. Right now I’m learning more about it as the doctors haven’t told me much of anything just that he has it.
I will keep you all in my thoughts and prayers!
I’m so sorry 💔
I can tell you one thing. The absolute hardest, most painful thing to experience is missing someone before they leave this world. It's such a strange otherworldly feeling because they're beside you, but they're so far from who they used to be that they might as well be in another galaxy.
Can u miss urself
It's like I already dead but I'm still in the world of the living...And it's not like the "dead" feeling of depression...I look around at all these people and everything they are doing I will never be able to do......
I will never be able to comprehend it the way I did just before I "lost" myself,before the serious onset of the disease.....
all the books and movies and music and anime I used to love greatly I will never be able to process or understand or experience it like I used to again......
all the feelings and emotions that they stirred in me and I felt so passionately and deeply.....
All the thoughts and ideas and words that I could reach for and mold like clay,and spin and weave in unimaginable ways.....like a masterful tang dynasty instrumental artist.....like a wordslinger after Roland the gunslinger from Stephen king novels....
It's like the real me the real cognition the real conciousness that existed just not that long ago before Oct 2021 is just gone.....disintegrated.....and whatevers left of me...
It's like the real u is gone.....but u don't know what u don't remember.....after all what is the real u but u being u?
it's like the universe is cruelly mocking me after 10 years of depression I am whatever is remaining of my cognition is desperately trying to convince someone,a doctor something is seriously wrong.....
I did not know about bvftd until my behavior changed so much over the past few years, and rapidly the past few months. I don’t want to do anything. I can’t work. I am a stranger to myself, and a monster to everyone else. I’m full of rage.
My friends think it’s depression. It’s worse. I miss myself, too.
Agree wholeheartedly. I lost my husband five years before he died. There's nothing that cuts as deeply as anticipatory grief, that mashup of sorrow and guilt.
My Dad had the loveliest personality. He made everyone laugh and the most mundane day to day tasks he made FUN! FTD took all of him away. He was a shell of himself. The man who was always laughing never laughed or smiled again like a light switch went off. All he cared about was his meals and sleeping for seven years. In the end he lost his speech but he never forgot who his family was..he just had no interest in us anymore. Very cruel disease.
My wife was diagnosed on 8-21-2020. This is the cruelest disease for not only my wife but all care for her, we are losing a little of her every day. Try to enjoy everyday and have patience, they do not know they are any different than they were yesterday, a month ago, or a year ago.
My wife has primary Progressive Aphasia. She was first diagnosed in 2018. She has tremors and non verbal. This video was hard to watch but I can say I am not alone. Thank you for making this video so others are aware.
This and ALS, simply a nightmare straight out of hell. 😢
AFTD is here to help! Call the HelpLine 1-866-507-7222 (toll-free) Monday through Friday from 9 a.m. - 5 p.m. ET or email us with a question at any time at info@theaftd.org.
We are on this journey at the moment with my 68 year old dad. It is heart wrenching to watch him deteriorate. His speech is declining, he walk has changed ( much slower) and has had a couple of falls. It was only the other day, I told him 5 times I love him, he just looked at me and walked off and that is OK. I hug him often and he hugs he back, pats me on the back. I would give anything to have him back again. A man of so wisdom, taught us as we were growing so much about life, he loved talking to people and people loved him. Such a horrible disease. I know see time is so valuable and every-time I see him, I make memories with videos and photos.
God bless the individuals suffering from this terrible disorder and their families. May each of you receive peace and grace.
Thank you so very much for your kind words. It means a lot to me. 😇
Estou passando por isso! Meu esposo está com apático comigo 😧
Amém 🙏🙌🙏
This is so hard to watch. I'm currently loosing my mother to this.
Thank you for sharing this video. This video is so apt! I recently lost my father to complications because of FTD. My father lived in India where it is even more difficult to explain people what dementia is.. let alone FTD. My father had a cluster of signs and symptoms described by these families. He had issue with finances, his speech, some obsessive compulsive disorders. His disease progressed a lot faster. He only lived about 2 years 4 months from his diagnosis.
I hope we all can find a cure for this dreadful disease which takes away everything from the person and his family.
I have so much empathy for the families who have gone through this awful disease.
I miss my dad very much. He was a good dad but I almost didn't recognize him for the last couple years of his life.
I’m 59 and going to see a Neurologist, I asked my Dr a few times about Dementia and Frontal Lobe and also Vascular Dementia. It’s been a back and forth journey therapy partial hospital program medications 💊. I have had brain fog and TBI’s . A lot of what was said . I will see what the Neuro says.
The AFTD Helpline (1-866-507-7222 or info@theaftd.org) can provide more information on subtypes of FTD, give guidance on managing a new diagnosis, and help connect you to resources and support.
For those of us with the diseases, it’s like watching parts of yourself disintegrating daily and you are helpless to stop it and you are watching those you love suffer.
Exactly. Thank you for explaining me 😢
Thank you for creating and sharing this. So many families (including my own) have been affected by this 'invisible illness' and it's so hard to explain to others what we go through or how to identify warning signs in others.... Raising awareness is the way to go.
FTD is becoming more and more prevalent in our society. It is an area that we as a community need to advocate for as in having a diagnosis of Young Onset Dementia (under age 65), there is a huge gap in services that appears not to be recognized where the family unit is concerned, as well as for the person living with the diagnosis. For some, the devastation can reach far beyond the diagnosis; socially, spiritually & more importantly the impact on the family unit economically. Government, health services and community across the nations need to step up and make a solid plan to assist these individuals and families through this journey.
AMEN ✝️
My dad has this. I was just sarting my senior year in high school when he was officially diagnosed. I'm 21 years old now and he is 53 now. He was 50 when he was officially diagnosed and had it 3 years prior to diagnoses. I'm honestly extreamly scared to loose him, I'm a daddy's girl and I'm scared he won't walk me down the aisle when I get married one day or meet his grandchildren. I would not be who I am today if it wasn't for him or my mom. I want him to see me graduate from college, I want him to walk across that stage me.
This video made me cry through the whole thing.
I only wish all these programs were available to me when my daughter had Picks fTD, Every day was like everyone of these family's experiences...so sad.
How old was she
*This film is more scary than any horror film I've ever seen. This is a disease straight from hell.* 😭😢
Yes
I am living it
@@roxannbowker6052
Oh no..... 😔❤💕
@@roxannbowker6052 I often feel like I am living in a horror movie,but as my daughter says that makes these kinds of movies."There is always a survivor in them."Please make sure that survivor is yourself,so take care of your needs as well.Eat,sleep, and try to create some joy in your life as it is a sorrowful journey.You aren't alone in this as I am suffering in the same way, and feel for you as well.
thanks for sharing sad but brave stories of the family suffering from FTD. I recently found out that my closest friend's father was diagnosed with FTD and I really feel sorry for his family and trying to find what I can do to them. Since it's not a well known nor it is a treatable disease, not many people know how devastating this could make one's life. (Maybe not even the caregivers, at first.) I myself also wasn't aware of this disease until my friend told me how horrible it was. Especially where I am from, information is even scarce and it is often confused with general dementia.
If you allow, I would like to make subtitles in Korean of this video so they can share or at least they don't feel they are alone.
Jin-Hee from Korea
I'd advice to Be there for him, especially when he's sharing about what he's going through. Not many people can remain there when he needs them badly.
Thank you for putting this together.
The part where the boys were reading a body book put me in tears. I feel for all of these families, as well as the children that are losing or have lost a parent to it.
I take care of a woman who has picks FTD. It runs in her family; all of her siblings had it, except for a younger brother (at least for now). Currently, an older brother is immobile in a facility. I believe one or both of her parents had it as well.
My grandma passed from dementia last year on her 75th birthday. I didn’t get much time with her so I don’t know what kind of dementia she had exactly. I’ve been learning a lot more about the condition since becoming a caretaker this past March 1st.
Love this video. It is good for me to know I am not alone. Thank you!
My mom was diagnosed with FTD yesterday- we've watched her decline fir years and we were told it was anxiety as well- now I know she can't help it and I have so much guilt... she's not going to be with us for much longer and that's a hard pill to swallow. She's 59.
We're so sorry to hear of your mom's diagnosis, Shauna, but we're glad that you found AFTD. We have resources and support available to guide you on the FTD journey. Be sure to visit our website: theaftd.org, and know that our HelpLine is available to you and your family by both phone (1-866-507-7222) and email (info@theaftd.org).
So Sorry 😂
@@lauralaplace9945what?
Thanks for this video. It was hard to watch. But, its necessary to bring awareness.
Absolutely heartbreaking!
My wife of 31 years is waiting on a diagnosis...this is real...and terrifying.
Thank you for this.
absolutely heart wrenching and tragic. It could happen to any number of us. for about 6 months I have had auditory hallucinations and just a general flatness emotionally. That state would pass but returns more often these days.
My dad got diagnosed with early onset Alzheimer’s initially- it was scary and eye opening. Then the diagnosis changed to FTD- I never thought I would be praying for it to be Alzheimer’s. I am going through the first stages of acceptance and grappling to find a clinical trial to put my father in- the doctors predict 1-3 years until complete degeneration. I can’t fathom how to go on from here.
Good morning, Nia. As you face your father's diagnosis and the FTD journey in front of you, we wanted to make sure that you're aware of the fact that FTD support groups exist throughout the country. Many in our community have found encouragement, support, and understanding through joining a support group. Here is a link to the support group locator tool on our website: www.theaftd.org/living-with-ftd/aftd-support-groups/
@@TheAFTD thank you, however I am based in Rome, Italy and unfortunately the information here is quite sparse :(
@@niadimitrova4112 we also host a closed Facebook group for individuals and families impacted by FTD, and invite you to join us there. Many community members who are geographically isolated or otherwise outside the reach of support groups have found the relationships and connections they forge there to be an invaluable resource: facebook.com/groups/52543721114
@@TheAFTD thank you, I have joined.
@@niadimitrova4112 you're very welcome!
life is about balance. i am awaiting diagnosis. have limited support. AM declining in motor symptoms now walking and talking. in dementia your brain doesn't have balance... my family don't believe me. I am fighting every day. i have had the diagnosis of depression and anxiety. i need help doing basic things. everything you take for granted...gone. am so weak and tired of this suffering....
its a death sentence
i only have love. love never ends!!
In my COuntry the doctors said that loss is not the right word
That patients are still people before the disease and that this sickness teaches people about humility as well as understanding
This is so sad and now i just found out that one of my dearest cousins has this disease. Everyday will be sadder as he says his goodbyes to his wife and children. He attended his daughter's wedding this last week Thank God he was able to do that. I truly believe some of these diseases are caused by things that are in our food and environment. Being retired from the medical field after 47 years i don't remember any of these types of problems happening to people years ago.
I agree with you. It’s on our foods, soils and environment as well. Air fresheners , perfumes, chemicals everywhere.
Wow, so many misdiagnosis…
I am now my husband's care taker of this horrible disease.
Priscilla Lehman, you are a good wife and he's lucky to have you. May God bless.
halo
Any treatment for this disease
I wish you strength and love. 😘
Have been diagnosed with FTD about 8 years ago. Fortunately my progression has been slower than most although about a year and a half ago I moved with great difficulty and a four-wheeled walker and totally lost the capability to MUTE. Couldn't even make sounds. Luckily after about six months like this a sudden change happened and I reverted to the condition I was in about six months before my low point. Now it's ups and downs with both becoming progressively worse. What isn't being mentioned in many stories that the ENTIRE BODY not just the brain, is degenerating. It is the brain after all that controls our ENTIRE BODY not just what you can see hear touch, etc. Heart, lungs, GI system, EVERYTHING is slowly degenerating. talk about going TO HELL IN A HAND BASKET!!! Goodbye for now. I feelworst for those around me.
Gerry, thank you for visiting our UA-cam channel, and for leaving a comment to share your own personal experience of FTD. We're so sorry to learn of your diagnosis and the progressive physical challenges it has presented. The unpredictable nature of the symptoms of FTD and their progression is just one way in which this terrible disease takes such a toll on persons diagnosed, as well as their caregivers, family members and friends. Here at AFTD we are working every day to create and provide resources - including our "It Is What It Is" film - that raise awareness of FTD, help the general public to understand the full scope of the disease, and facilitate additional research aimed at determining its causes. We also provide resources for persons diagnosed and their care partners, and encourage you to visit our website to learn more: www.theaftd.org
Have you considered adult stem cell treatment? I realize it is not FDA approved, but many great supplements are not FDA approved either. It may be worth a try.
Raymond P. Kot II, Esq There's a reason its not approved, its because there's no proof of its safety and/or efficacy. These experimental 'treatments' are just taking advantage of the despair for money. There is a huge snake oil business of this kind of practice with cancer. When the treatments stop working, the patient or caretaker is willing to do anything and take any chance. They soon depart with their money and then their life.
I was diagnosed at 46. I said to my wife what I should do, she said get up each day and enjoy it. That’s what I do, I love my kids and every day with her. I’ve had terrible doctors, one told me there was nothing wrong with me because I had make up on. We have also dealt with terrible homophobia, I wonder if they care if I’ve been married for 25 years and have 3 amazing kids. I am sliding down faster and strangers think your joking if you tell them you have dimensions because of your age. Keep advocating, keep loving. I am going to use assisted suicide when the time comes. I feel this need to still be a small bit of me when I die, but I’m not leaving because I want to. P.S. My specialists told me not to come any more even though I have severe tremors, speech, falling, numbness, choking, scarring, passing out + much more. The medical system needs more understanding and research. Understanding and love to everybody fighting this battle💗
Such a horrible, sad disease for the whole family.😭
They are still amazing people desease or not my mother has dementia and she may have lost her brain but deep inside she is still her 💖💖💖
Awareness is key !
I'm only 32 and I think I have FTD dementia......can anyone help?
And I think it might have been undiagnosed for a long time....
I might have approached a serious stage of the disease....things might have progressed rapidly last two years and I became worried when alarming signs appeared this year.....I'm starting to have serious problems with my memory,it's like I can hardly remember memories from my past.....my short term memory feels much weaker and significantly declined too,a lot of my vocabulary seems to be gone and I have trouble constructing sentences in my mind.....
I always felt like I was a pretty creative writer/person not professional though but now it seems like I can't think of anything anymore like my mind has lost all its depth and creativity and nuance and abstraction....it's like my mind is just a tight ball of emptiness,like it doesn't even know itself anymore,like it doesn't even know what it doesn't even know.
And there are all these weird stuff.....like a serious loss in sex drive in the last 2 years......like I had no attraction to the opposite sex.....and people just seem like people to me.....it's like I have no thoughts about anyone,no biases no prejudice no preferences no racism or anything that people might think of when they see all kinds of people on the street.......I have no preferences and no idea what I want when I am looking at food and drinks in a shop......and I lost alot of my higher cognitive function......I love reading I used to read novels like I know this much is true by Wally lamb.....tomcat in love by tim o Brien....a beautiful mind.....wicked the life and times.....etc etc.....but something is seriously wrong.....my mind struggles to hold 2 or 3 sentences now and grasp the meaning.....And top it off...I suffered from severe depression for more than 10 years in my life and binge ate alot what they said were symptoms of FTD......I'm literally struggling like the lady at 4:35....And my math skills has atrophied alot.....when I was a kid I used to take mental abacus,I attained the highest or second highest level where u had to do 2 digit by 3 digit calculations mentally without using a cal..... obviously,I have not been doing it that much the past twenty years but I still do some calculations mentally now and then and was pretty sure I could still do 2 digits by 3 digits just that it took a longer time.....until recently I was shocked when I was asked to deduct 7 from 100,My brain like skipped for a min,it kept thinking if I subtracted 7 I had to take away ten and add 4,for some reason my brain thought 10 minus 7 was 4......I had to really focus and do every subtraction carefully and slowly,its like it forgot the multiplication table that kids learn in primary 1....I recovered a few days later and could do 2 digits by 2 digits again but it was extremely extremely difficult and took me forever.....it's like my brain couldn't hold numbers or couldn't picture the
Sigh....can anyone help me?pls
I literally might be wasting away from a and here I am desperately trying to convince the world someone that there is something Seriously wrong with me...wIth the symptoms so obvious I obviously am suffering from the disease yet the doctors all say they don't find anything.....they say a ftd diagnosis usually take years.....I don't even know if I will still be self aware by then.....
If someone can help me.....pls email or Skype me at frenchbriefs@gmail.com.
Good afternoon, Jon. Thank you for taking the time to watch "It Is What It Is" and to leave a comment. We are sorry to hear that you are concerned that you may be displaying symptoms of FTD. We would encourage you to reach out to your doctor to begin exploring your symptoms and seeking a diagnosis. You may find helpful information and resources on our website to present to your doctor, if they are not familiar with frontotemporal degeneration. The "For Health Professionals" section of our website is specifically geared toward acquainting professionals with information about the clinical presentation and diagnosis of FTD: www.theaftd.org/for-health-professionals/ You can also check our website to see if there are any FTD-oriented medical centers in your area. Just select your state from the drop-down menu, and then expand the section titled "View Medical Centers": www.theaftd.org/get-involved/in-your-state/ Finally, you can always reach out to AFTD's HelpLine by telephone (1-866-507-7222) or email (info@theaftd.org) to speak with a trained member of our program staff about your questions and concerns.
That’s what I keep telling my wife. I knew what was wrong with my wife before the doctors could tell me.
This just. Rip's my heart out!! :'( FTD took my father at the age of 42 & I now care for my aunt who is bed ridden , stiff and rigid, nonverbal and absolutely motionless not to mention the uncontrollable seizures some days she may just have 1 & then there's the nightmare days They come one right after another ! To anyone who has a loved one or caring for a loved one with FTD my heart goes out to you ❤🙏 I can't bring myself to be checked for this genetic, I don't think I could live with myself knowing this would be my outcome, I don't want my family or my children to be forced with a burden to put their life on hold to care for me or see me go through anything my father and my aunt have & is enduring, the heartache the pain the questioning the mad the why's to this disease it's never ending !! This is my biggest FEAR😥
My biggest fear also!
I’m with you my biggest fear. My sister has it in her early 60’s. It’s heartbreaking 💔 to watch my sister fade away.
I’m exhibiting early signs of this disease. I’ve lost a great deal of who I was. I am working on seeing a neuro psychiatrist for diagnosis. I’ve cancelled a few times because it feels overwhelming to even get out and going and talking about it. But I’m going to go this time. I know it’s important to those who love me.
this is so hard to see and hear , but I have to learn since this sounds so much like they have not told us just yet.. I guess i'll hear something in 2019.. ( I miss my old mom)
Sonia Martinez my heart goes out to you & your family . I know your heartache & pain all to well, my father was only 42 when he passed away FTD & his sister is now in the end stage of FTD , It is truly a living nightmare knowing this is genetic & there's a 50/50 chance my life or even my children's lives could be stolen just the same 😥
I pray that God be with you & your family and give each of you the love, strength & peace in your hearts to face each day .
Devastating for all
I can't believe and experience tells me there isn't a set time scale from fld to death as can clearly realize symptoms were there for over 15 years before the problematic ones that lead to diagnosis arrived and that was in 2013 2 years after I first said mum isn't right and she still is physically strong, has moments when the DRUGS aren't having effect that she is herself but thé self knowledge at that time is the most heartbreaking. It's more likely that we will all die from physical exhaustion or mental stress and anxiety before she will. No one can say oh when this happens that means end of disease etc just have to take each new symptom or progression of one and keep managing and going. Forgive yourself for being angry at their lack of understanding of what we r going through and their own self consideration and forgive them for being sick with this disease and who it makes them bé. We were told that not like other dementia but there are moments she forgets who we are or what stage in her life she is living but never lasts unlike main symptoms. It's actually those times where we find amusement from this awful disease and it's effects on us àll. Think it's called dementia cause it makes every one demented not just the sufferer
Beautiful people. All of them.
Sdaly encouraging...
My husband was first tested in 2013, reports were told us as memory issues but not given a name of FTD until 2015.He was just re tested this month and it has worsen I am noticing many more changes. I am not sure if he really needs to know what all could happen to him. He knows its FTD but not aware of all that occurs. Not sure if he really needs to be told and if he will understand it.
HI, Sharyn. Thank you for reaching out- we are very sorry to hear about your husband's diagnosis and subsequent decline. Each person's experience with FTD is unique, but you can always ask questions and seek information/support via our HelpLine. You can reach the HelpLine by phone: 866-507-7222 or by email: info@theaftd.org.
Sooo SAD!!!😭
Have the medications made it through clinical trials? This was posted 6+ yrs ago. Anyone know?
I am struggling
Hi Josh. We're really sorry to hear that you're struggling. It's important to remember that you're not alone. If you need someone to talk to or support, our HelpLine is here for you. Reach out to us at 1-866-507-7222 or info@theaftd.org.
If you have FTD, stop and smell the flowers while you still can. Cheers!
I'm still here... but I can't remember me... or why... 😮💨
O was unaware i was only a child with it
How do you know of you are getting it? Is it assimple as when you're trying to say something and you forget what you're talking about?
Good afternoon, Gary. For more information about the signs and symptoms of FTD, you can visit our website: www.theaftd.org/what-is-ftd/disease-overview/ If you are concerned that you may be exhibiting symptoms of FTD, you can also use our website to locate FTD-oriented medical centers near you: www.theaftd.org/what-is-ftd/research-and-medical-centers/
Please research Dr. Dale Bretesen, researcher and physician. He has founded a protocol that is explained in his book, Reversing ALZ. This is a Functional Medicine approach that identifies and treats the root cause of diseases.This is what we are using with my husband who was diagnosed with FTL in 2017. We have seen good improvements. His constant confusion is gone. His short term memory is back. We have not been able to improve his cognitive function so apparently that area is already effected. I was very touched by the partners who are learning to take care of themselves now for the time they will be alone. This is what I am working on too. I've taken over the bills, the selling of our hobby farm the buying of our new condo. I am preparing myself for the future when I will be alone.
Donna Allgaier-Lamberti I recently purchased this book and in the process of reading. My partner was diagnosed in June with a rare FTD. Its name is right temporal lobe variant. She is experiencing symptoms that are usually experienced in left frontal lobe which remains virtually untouched. Strange. Question: how is your husband currently doing? Still noticing a slowing of the progression? Thank you.
WOW!
Your describing my Wife...
Jim , I'm so very sorry it is the most difficult thing I've ever had to endure in my life holding my father's hand as he passed at the age of 42 and now I gracefully hold my aunt's hand as we deal with this disease yet once more :( God Bless you & Your wife!!
@@sylviahumphrey8493 is this hereditary?
@@sandrapearce2396Unfortunately yes Sandra FTD is😦
@@sandrapearce2396 30% of cases are hereditary.
My daddy died of this disease in 2009 at the age of 89 after being diagnosed ten years earlier. He probably had symptoms a couple of years prior to that. At the time adult stem cell treatments were not common knowledge nor where there many uses for them. While not FDA approved, can adult stem cell treatments using one's own stem cells turn this disease into a chronic disease? Certain supplements are known to prevent or at least substantially reduce the occurrence of Alzheimers Disease. Turmeric with black pepper extract comes to mind as a very important disease preventing supplement. While Alzheimers is now thought to be caused or at least triggered by one or more viruses, Picks Disease / FTD family of diseases lags in research spending and knowledge. If my father was diagnosed today I would take him for adult stem cell treatment and learn as much about alternative medicine as possible (which I started doing after his death for myself, my mother and others).
❤
😭😭😭😭😭
I can only
are the people know what is happening to them?
Impossible to know, but probably not. Its a degenerating disease that slowly destroys your personality and self. If youve ever had a mood swing, imagine being like that permanently. Just an example. How would you know of any better when youre a prisoner of your own mind and hormones.
Like stroke patients who think theyre speaking perfectly fine, but nothing but gibberish is coming out of their mouths.
I think they do i am not a doctor. Mu experience with dad
🙏🥀🥀
If I got this horrible disease, I would take my own life where it looked like an accident before I put my family through that.
I could not bear going through eternity knowing that their memories of me, was a man who had deteriorated down to a shell.
I would willingly risk GODs wrath, than my wife of 28 years & children suffering that horror for days months and years.
I do not think God would hold it against a man or woman who knowing the end, chose a different path.
Sorry, but this disease is just beyond horrid to me.
Those poor people robbed of their very heart, mind and conciseness through no fault of their own...
Jesus that is just a nightmare!
matlock12c I have said those exact words for many yearsnow :'( it's a true living nightmare!!!
You might ask your loved one which one they would rather have, losing you now or some years of being with you in your illness. My wife has a variant and, as difficult as it is, I live to make her as happy as she can be and we are happy together.
I used to say that - before I got dementia. I am married and have 3 sons and 5 grand children, I would never leave them with my killing myself. My brother committed suicide, I know what it feels like - it's horrendous
My brother has this and he doesn't want to leave us.
@@malignantcynicthat’s beautiful. Thanks for sharing your experience.
Sad. Its interesting tho. How fast it advances. I can't remember names, or get my pronouns right. Bad car accident, then later, a nasty fall.
You just don't know what is around the corner of life
This is completely jumbled up and of no assistance .
Some times I haven't eaten all day, and I think. "You don't need to eat because you are already dead." This disease opens up such a long corridor between living and dying. It is just too much to ask. I just want to set them free.
rmy。
This looks like a "rich person" problem 😔