Frontotemporal dementia: Interview with Dad July 2014
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- Опубликовано: 30 сен 2024
- Our yearly interview with my dad, who has frontotemporal dementia. When he was diagnosed, he said he wanted to help other families dealing with this disease since there's way less out there about it than about Alzheimer's. We took him yearly to be interviewed by med students when he was still capable of it, so that they could learn from him. And we started doing the videos for two reasons: 1) so that other people - particularly med students (his neurologist teaches around the world and has used these videos in her lectures) - wondering how Frontotemporal Dementia progresses can see it, and 2) so that his friends who lived far away could see how he was doing.
He tends to perk up and get a little clearer when the video camera is on him. I think it's the old performer in him. The day before, he didn't know the answers to most of the questions I asked him in this video. The fact that he'd heard and sang along to music immediately prior to the videotaping also helped stimulate his brain, I think, making him more "with it." If you look at the previous videos from the last 2 years, you'll see some consistency and some decline in his answers. He has gotten a lot less verbal, but he still loves to sing. I tried to shoot the videos at roughly the same time of day since he tends to be sharpest around lunch. This is about 6 years after he was diagnosed (though I think we saw signs all the way back in 2006 - we just didn't know what it was). You can see the prior year's interview at www.youtube.co.... and the following year's interview at www.youtube.co....
I have published a book called Fractured Memories: Because Demented People Need Love, Too. It features 40 paintings and recounts my family's hilarious and heartbreaking journey through my dad's dementia. I’m hoping it’ll help remind everyone - not just caregivers or people with loved ones who suffer from dementia - to look for the laughter hiding amidst the pain. You can find paintings from the book at shop.emilypagea..., and the book itself on Amazon: www.amazon.com...
I love how nicely you spoke to your Dad,so patient and kind.
Great Daughter 🌹 I have been working in elderly day care center for 15 years. I love to play many games with them, hand-made, word search, trivia chat, chair exercise. I love to see their happy face.
So sorry for the loss of your father! Your singing with him was beautiful!
Oh wow..this melted my heart. You are such a loving daughter.
What a beautiful family.
It’s amazing how the songs come so readily. What a brutal affliction! God bless! 🙏🏻
What a wonderful family! You are a great daughter. My mom is suffering from Lewy Body Dementia. Some days are better than others but it's really taking a toll on the both of us. Thank you for sharing this video. Take care!
What is most remarkable (and which I have personally witnessed) is that music must be stored in a very «secure» part of the brain. Even when you don’t remember where you are, you still know the lyrics to your favorite song. My uncle is suffering from dementia and lives in a care facility. He doesn’t know how to dress himself anymore, but he can still play the piano.
Lovely man, lovely family so respectful. My father is in the early stages, and is trying to hide the symptoms. He tells me he hates me every five minutes, and loves my sister but not me. Its difficult. Sending love.
I'm so sorry you're having to go through this. It's so incredibly hard. Just know you're not alone.
Thank you Emily for your touching video. I'm a medical student, this helps a lot to recognize certain patterns. Take care.
You're most welcome. Be sure to check out the other videos of him. You can watch the progression over the course of several years.
Awesome, lovely video!! Thank you. You sure can sing. What’s the best books on this brain illness? Kathy! Thank you Dad
God bless your lovely Dad , I lost my Dad to vascular dementia in 2018 and my Mum has advanced Vascular Dementia too , she is losing her long term memory now , it’s so sad and such a cruel disease , I too take lots of photos and videos so that we can have the memories ❤️ much love to you and your family xxx
My sincere condolences to your mom and you and those who knew him and loved him..my grandmother , father in law , uncle and it's possible my husband may inherit this disease and it's a un forgiving and heartbreaking . Take care of each other through this difficult time and yes he is not suffering any more. God bless 💞🙏🏼❤️
My father just passed away from FTD at the age of 64. He was diagnosed at age 60. I wish I would have taken more videos of him in the beginning. Sad disease in the end. The last 3 months were brutal. Your videos are heartwarming. Thanks for sharing.
I'm not looking forward to what lies ahead. I know it's going to be rough. Thanks for your kind words and I'm sorry for your loss, too.
My mother was diagnosed 4 years ago she is 64 now can you tell me about last 3 month but i can't figure out in what stage she is!
Lord have mercy! I was a nurse in a dementia facility and I loved every single person who was a resident there. May all who lost their lives to this disease…Rest in Peace Beautiful Ones🙏
I believe my father is about to be diagnosed with FTD-he is 67.
Can you tell me what were the first symptoms that you noticed?
I’m so afraid for him and myself as FTD is passed down to children 50% of the time.
Thank you in advance.
I love watching this because it reminds me of my dad and I miss him 💜
t e a r s...
I literally can feel the love you have for your dear Father... It's so palpable...God bless your Family... xx
Lost my mother to frontotemoral dementia last 1 year ago after taking care of her for 6 years. No one should have to watch a loved one go through that. God bless
Anthony Velten Thanks, you, too.
I saw my grandmother go through dementia. Its so hard to see them slowly disappearing 💔 I took many videos of her and documented it. My grandmother was the sweetest, no one deserve to go through that.
Oh how I wish I could sing like this girl - she sounds so gentle and feminine.
Thank you! My dad was a jazz musician, so naturally, he taught me to be a jazz singer.
You do have a lovely voice
@@bdlimea7018 Aw, thanks!
@@emilyanddadYou have the most beautiful and calming voice... Loved the singing.
@@Patricia-wp2ni thank you so much!
i am honored to be the 700th “like” to your video… and wow, you (the daughter) have a great voice. is your dad still alive? i know its been 9 years since this video.
Wow made me cry so much, it's helped me a lot thank you. My mom was misdiagnosed with early onset alzheimer's but it never fit. None of the symptoms matched. I've recently discovered FTD and it's 100% what mom is going through, and it explains why she was having so many problems as people were trying to group her in with alzheimer's and give her treatments for symptoms she didn't have. I watch your video and it's a carbon copy of my interactions with my mom: the way she speaks, moves, answers questions, that look on her face while she tries to find words and answers, and how she's accessing information, her ability to recall long term memories with prompts but not find words on her own, those simple conversations that she can still follow but not contribute to. The biggest thing we struggled with is the fact that she always seemed to be present and aware, even though we were told that when she hit these later stages she wouldn't be, so even now when she's so far advanced and in a home people overhearing us interact don't realize she's sick since she's still so normal - That is until they start interacting with her and then they're really confused. It's validating, thank you. I know how truly heart breaking this is, and how difficult it is to go through. I wish there was a cure. Thank you for sharing. :).
Yes, I suspect that a lot of people are misdiagnosed and that FTD is way more prevalent that we think. We were very lucky in finding a doctor early on who had experience with this specific disease. There are several FTD online support groups that I didn't discover until after Dad passed away in February. You might want to look into them. I have a book that will hopefully be released around Christmas chronicling all of the heartbreaking and hilarious moments my family went through. I'll post on here when it's available. Hang in there. I know exactly what you're going through and wish I could take the pain away for you. Just keep looking for the moments when you're mom is there in the moment with you and don't let go.
Kelly F. Thank you as well for sharing. I’m a month away from the first anniversary of dad’s death. It’s so hard to accept that I prayed for him to go..... He was much worse than this gentleman when he left.
Lost my mother to this, took 5 years. Heartbreaking and painful for her too! Miss her every day
Your dad seems like a sweet man and when I saw your mom with him dancing it was the sweetest thing!! God bless you all.💞🙏🏼
Thank you. He actually passed away yesterday. The last few days have been painful, so we're glad he's not suffering now.
+sandra dube I've launched a campaign on Publishizer to take pre-orders for the book I'm writing about our family's experience with dementia. Just in case you're interested, you can see the full book proposal at publishizer.com/fractured-memories/. And if you'd be willing to help spread the word, that would be amazing!
Thanks for sharing, by the way your voice is beautiful
Thank you!
Pavel Aldana She sounds really sweet
This is the closest example of how my husband was. So sweet so kind that little grin always on his face. He would always look to me for answers and approval . I cared for him at home for a little over 8 years. He was misdiagnosed with Parkinson’s with Parkinson’s dementia but had Lewy Body. God Bless you !!
thank you for sharing this video, my father has the same type of dementia and it is honestly the worst disease ever!!! but seeing your love and patience for your father really touched me and made my day. I will deff keep you and your family in your prayers and wish you all the best of luck
David Heaton Thanks, David! It is, indeed, a horrible disease. I'll keep your family in my thoughts, as well, as your journey with your dad progresses.
Emily I praise you for what you did with your dad. I work in a care home with all different types of dementia and it’s hard work. I read a lot of nasty comments on here about you doing with your dad perhaps these people need to go work in a care home and see for them selves. you did a great job. thank you for sharing your video and your time with us all 😇
Thank you so very much for your kind words. Every time I get a notice that a new commment has come in, I have to brace myself in case it's someone being unfairly critical. So your comment is very much appreciated. Thank you for doing the work you do. It's not a job just anyone can handle, and I so admire the people who love it and do it well. Grateful for you.
@@emilyanddad your so very welcome. It’s my pleasure.
So sweet. I cried when you two sang Bye Bye Blackbird.
*Awwwwwww...... Loved the singing together. Precious. You're a Sweet daughter!!! 🤗🤗🤗* Sharon in SC
Seriously Emily your video brings me to tears! You make him so happy! Congrats for you it takes a big heart!
Thanks Jamelyn, we had a really incredible relationship before the dementia, so he's really earned my patience. I love to hear him laugh.
Im sure he has worn his patience and your still patient with him. But not only that, your deflect when he makes a situation awkward to keep things positive. You praise him well! Its obvious your very intelligent and have a very empathetic heart. Really you might not know how amazing you are with him. So many people all they do is ask their love ones "do you remember this or that" and it just makes them insecure and focus on the fact that something is wrong but they don't know what. I'm so happy he has you!
As a 75 year old woman, this was both touching and understandable to me. The deterioration of our ability to recall nouns comes on slowly and some days are better than others. I have found that a rested mind can recall nouns better than an unrested mind.
What a beautiful man..and wife and daughter. I loved the piano playing x
ive got to say you sing very wel.
good luck with dad iam living it too with my dad..
greets
o and youre dad has the kindes face
+nightstylo I've launched a campaign on Publishizer to take pre-orders for the book I'm writing about our family's experience with dementia. Just in case you're interested, you can see the full book proposal at publishizer.com/fractured-memories/. And if you'd be willing to help spread the word, that would be amazing!
What a Good Soul
Music is magic.
He didn't lose his "sense of humor."
You and your family are incredible!!
They treat him like he’s two, is that what you supposed to do?
Every patient is different. With frontotemporal dementia, the brain actually atrophies, and patients often become very childlike as they loose executive functioning. As you can see, he was perfectly happy in how we interacted with him. The goal was to keep him happy, and whatever way of speaking to him seemed to make him happiest is what we did.
Yes, makes me very uncomfortable.....surely it treats it's husband/boyfriend that way....
@@emilyanddad the interaction was so beautiful!! Thank you for sharing! I was recently diagnosed with dementia and I am trying learn more about it. God bless you and the family. Don't allow negative people to discourage you. Your family unit is awesome!!
Yes because their brain is regressing. Some go clear back to the fetal positon before dying.
@@Roudter You really have no idea until you are in this position yourself. This disease changes the brain in ways you can only know from knowing someone who has it. It is extremely difficult to communicate and these sorts of questions are very much appropriate and beneficial.
This is heartbreaking. And I’m so fearful of it happening to me or my family.
its crazy how in every video of a person with dementia / alzheimer's always seem to agree with what they are being told while looking like they have no idea where they are (I mean they probably don't) then they will answer questions almost like they are trained to answer it not like they are really knowing the answer. very sad.
Reminds me exactly how my mother was..in fact her facility was in front royal, VA.and was similar with a person playing piano etc. We certainly got an education in the stages of dementia. God bless you!
He's adorable ❤️
I'm so sorry for your loss. What an awesome guy! I'm glad you found him such a lovely nursing home.
He seemed to be a lovely man. God bless him
How beautiful! My Dad has PPA, and this is exactly the same conversation I have with him on a daily basis. Much love and prayers.
I'm so sorry to hear he passed away. He seemed like a character . And maybe it was your energy I should find this video today. My deepest sympathies, condolences, and thank yous for sharing. I cannot send enough love and prayers your family's way.
schmitty3500 Thank you. Sorry to hear you're going through something similar. I highly recommend making a video. You'll want it later.
+Emily Page I will for certain. And I think our Dad's would've have really enjoyed hanging out with some good music and a small task for sure. I think your Dad may have had a hand in me finding this through my shuffle on You Tube my dear Emily. Sending the largest hugs from a stranger.
schmitty3500 Thanks. Sending hugs back.
+schmitty3500 I've launched a campaign on Publishizer to take pre-orders for the book I'm writing about our family's experience with dementia. Just in case you're interested, you can see the full book proposal at publishizer.com/fractured-memories/. And if you'd be willing to help spread the word, that would be amazing!
Oh gosh I am crying while you sing.
Blessings always ☝🏼💯🙏🥰
I’m So Sad Me Maw is going threw this I want it to stop but it doesn’t wish she would get better but she won’t
My heart goes out to you. My Dad was diagnosed in 2009. It's a heartbreak that is unexplainable. Prayers to your family.
Thanks, Joel! Hope your family is managing it as best as possible, too.
*So sad, but anyone who has looked after a loved one with dementia will know how hard it is physically and mentally.... One of the hardest things in the world is mourning someone who is still alive... Check out this blog for useful info; **homeocureworldwide.blogspot.com**, Be it any condition, natural treatment and a healthy diet is a road to fast recovery.*
Amazing video. All the best to your dad and your family
+Spamuel John I've launched a campaign on Publishizer to take pre-orders for the book I'm writing about our family's experience with dementia. Just in case you're interested, you can see the full book proposal at publishizer.com/fractured-memories/. And if you'd be willing to help spread the word, that would be amazing!
Whoa! You have a beautiful voice.
Thank you!
My grandpa has this and he's only 60
I'm so sorry to hear that! That's one of the worst things about this disease - it can hit so young. I just published a book about my family's experiences: shop.emilypageart.com/products/fractured-memories Don't forget to look for the love and laughter as you go through this journey with your grandfather.
That is a beautiful dad , no matter what ❤
So sorry for the loss of your dad. I am currently taking care of my mother-in-law that has dementia. It's the hardest thing to have to go threw.
+Lynn Armbruster It definitely is. I'm sorry you're having to deal with it, too.
+Lynn Armbruster I've launched a campaign on Publishizer to take pre-orders for the book I'm writing about our family's experience with dementia. Just in case you're interested, you can see the full book proposal at publishizer.com/fractured-memories/. And if you'd be willing to help spread the word, that would be amazing!
Thank you for sharing Emily Page! My Mom has Parkinson's and Lewybody, she is under 80 pounds and went into a psychosis on Religion. thinking she was going to hell she has calm down on that issue a bit since the doctor put her on medication.
+puppetken I've launched a campaign on Publishizer to take pre-orders for the book I'm writing about our family's experience with dementia. Just in case you're interested, you can see the full book proposal at publishizer.com/fractured-memories/. And if you'd be willing to help spread the word, that would be amazing!
Thanks for sharing this video!
She has the sweetest voice :)
she is too condescending
awww your father is so sweet
Personally, I’d prefer to not be videoed by my kids if I had dementia and couldn’t give a competent consent to being filmed.
Why do people always assume we didn't have consent? Please read the description under the video for an explanation on why we did the videos, with his permission:
"When he was diagnosed, he said he wanted to help other families dealing with this disease since there's way less out there about it than about Alzheimer's. We took him yearly to be interviewed by med students when he was still capable of it, so that they could learn from him. And we started doing the videos for two reasons: 1) so that other people - particularly med students (his neurologist teaches around the world and has used these videos in her lectures) - wondering how Frontotemporal Dementia progresses can see it, and 2) so that his friends who lived far away could see how he was doing. "
I just went through this with my husband and you have to explain and be gentle and never argue your point and it is very hard. my husband had a good clear day and my son and I were so happy then 2 days later he died.We just lost him and it is so hard.
I'm so sorry for your loss, but I'm glad you got a clear day with him before he died. Hugs.
@@emilyanddad Thank you.
Precious
My siblings and I are about four years into this "adventure" with my mother. I don't think people realize yet how devastating this disease is for the people going through it and the family members and caregivers. There will be 2-3 generations coming up who will require care outside the home at some point in their dementia journey. We are finding that unfortunately communities, nursing staffs, and government agencies are not really prepared currently to deal with the numbers of residents and families that are coming forward for help. I hope as people share their stories this will bring the need for more understanding and resources in the future to the attention of those in the medical and health industries, courts, and government agencies.
I couldn't have said it better myself. Finding a room for him was really hard, and as the baby boomer generation ages, it's only going to get harder.
God loves the meek
Beautiful family
Watched the slow decline of my father, dementia, Parkinson, mini strokes. Was one of the hardest parts of life I ever watched for 4 years. Bought into a Tiered facility and everything that you could imagine happening, did happen. I WOULD STRONGLY RECOMMEND, Putting hidden cameras throughout the patients areas!!!! NO matter the Cost of Private wi-fi.
So sad for this gentleman. He must feel sad about not remembering so much. You are very affectionate with him. But can’t help but think how disturbed he must feel having this disease.
Hi there Emily, this was a very touching video! I am an architecture student doing my dissertation on Dementia patients in hospitals and it would be amazing if I could ask you a few questions? Please let me know if this is something you'll me happy to help me with! Take care, Lauren x
Thanks Emily for sharing and I am very sorry to hear that your dad passed away . Believe it or not I am here because I found my disease just last night on my own. To this moment non of doctors was able to even discuss it with me as I am in the middle of forty and they think it is early for Alzheimer. Doctors gave me memory test for Alzheimer and I did get good scores and they think I am exaggerating and they just advised to live my life. My story with this disease went back to 80s when I was in my 20s. It started with forgetting my best friends' names for seconds and even minutes with headache when I could not recall their names and most of the time it took time to recall them. I went to different doctors and all of them advised me to watch my iron level which is Hemoglobin. I ate every source of iron and I got my Hemoglobin level to 16 but the symptoms remained the same. In my 30s I noticed that I found difficult to recognition people’s faces and I noticed that my writing was illogical in some occasions when I proofread it again and again. for example small errors like I write (my) instead of (me) or I do not type a sentence my mind created for example, (I went with friends to the beach last week and very much) The missing words are (we’re enjoyed it) So I thought this is because I am in hurry writing my PhD assignments. But in fact it is really annoying and very very annoying. The problem rose when I failed my PhD and I was drawn from the course that’s because I found it difficult with my circumstances, not able to argue or challenge my supervisor not to reply to her emails for 3 months and neglecting her warnings and now I knew the reason after too late. P.S I graduated from the university with BA , grade 86% in 1993.
Some people who may eagerly will ask how I was able to diagnose it by myself. To answer this question last few months I started to hunt this disease with no help from anybody just using Google search. The symptoms came to a disease called Bipolar disorder and I firstly confirmed that it is Bipolar and stopped searching because there are some similarities and kept on reading about how to ease the symptoms but I noticed different things happening to me that Bipolar does not have and one of them is Blindness. Yes Blindness and it means that you see something relevant to your life without giving any attention to it for example you see someone who you didn’t see for ages and without giving him any attention and wave your hand to him . I noticed sometimes I can’t estimate the bad things happened around me for example I hear my little boy behind me tearing his older brother story book pages apart and I hear the sound of splitting the book page and I give no attention but my wife in the other room came in hurry shouting to me and asking to stop my litte boy from splitting the story book pages This was repeated in many occasions and this point woke me up and made my heart beat hard and last night did very hard search and all symptoms came to Frontal lope dementia. I found all the answers to my all questions in every single details and every single information happened to me since I was in my 20s.
I started taking those vitamins separately Magnesium, Zinc, CoQ10, Folic acid and B complex vitamins, Omega with vit ACDE and they really helped to control my anxiety and calmed me down since I discovered Bipolar.
Lindsay, he was diagnosed in 2008, though he was showing signs for at least a year prior. If you go to my channel, you can see interviews with him from the last 3 years and watch the progression.
+Emily Page I love you emily page
+Noonie Noonie i really love you and your dad!
+Emily Page I'm so sorry for what all of you are going through.
+Mary Roe Thank you. He actually passed away about 3 weeks ago, so his journey is finally over.
+Emily Page I am so sorry for your family's loss. These diseases are devastating to the loved ones as they desperately try to hold on as the person fades away. My friend is just beginning her journey with FDTbv. She doesn't have family to help her; just a couple of friends who are muddling through.
thank you for sharing. FTD is an awful illness. My mom passed away May 4, 2013 and my father passed May 1, 2014. ON their death certificates, both of them on the first line where it has immediate cause of death it states, Frontotemporal Dementia. My mother was diagnosed for only 2 1/2 years. My Dad was diagnosed only 5 months. We thought a lot of his behavior was from dealing with my mother. Thankfully their memories stayed fully intact, they both had the BV FTD.
I'm sorry to hear that. It is a very tough disease. That's a really fast progression. It's just so different with each individual. I'm glad to hear that their memories stayed in tact.
did u say berserkeley? haha there is a town in massachusetts by that name and my dad's friend who lives there calls it that
actually the real name is Berkeley
Yes, we were talking about Berkeley, CA, but my parents called it Berserkly because everyone there was so weird, lol!
Going through this with my 85 year old mom. There is so little information for caregivers and so appreciate you and your family doing this to help us caregivers get through it💔
I'm so sorry you're going through it, too. Thank you for the kind comment.
@@emilyanddad it is such a frustrating, heartbreaking disease and changes so often. Sometimes I feel like I’m going crazy I swear as I’ve been doing it for 7 days a week for 5 1/2 years alone with not one single day off. You begin to wonder yourself what day it is or month when they don’t know and are confused. I swear the typical doctor answer is always it’s the progression of the disease! Nobody tells you HOW to deal with it and God knows I always try to be patient and calm or makes her more agitated and harder for me. Caregivers are human too and I so appreciate those of you that do videos through the eyes of a caregiver♥️🙏♥️
@@debby891 it's SO difficult to get through. If you'd like a free PDF of my book about our journey, feel free to email me at emilypageart @ gmail.com. It might help you not feel so crazy. Big hugs.
How old is he? Poor guy
In this video, he was 72.
mi nombre es Catherine Covarrubias y cuidado ala sñra Leonor y somos chilena noscuesta mucho acostumbra pero la Amo
we are working technological project for these patients.emily can you tell me the stage of your father dementia?.so plz can you give me the information about your father's dementia?
+Soahil Mushtaq I just saw your comment. Sorry I missed it. My dad passed away at the beginning of February. I think we took this video about 5-6 years after he was diagnosed. What kind of project are you working on?
What was your dad's profession?
I hope that stem cells will repair brains. :'(
Your voice beautiful dad enjoyed
How long has your dad had this?
Research Dr. Newport and Coconut Oil. She has videos on RUclips. The videos will have all info you need to help your father.
I did. I couldn't find any peer reviewed research articles on it, but I quickly found this: www.agingcare.com/articles/re-examining-coconut-oil-for-alzheimers-theory-172016.htm
Regardless, he didn't have Alzheimer's, he had frontotemporal dementia, and he died 3 years ago. But thank you for offering a possible treatment.
My girlfriend´s father got it now with a strange break thru.
But when I see this interview it´s like a little chance to have fun with him and I see u seem to love him very much. It´s nice to see your kind of communication with a lot of rest in your voice and laugh and understanding. but it must be hard for you to be confrontated with it, isn´t it`?
Hope you will have some more fun as long as it´s possible...
Deepest greetings from my heart to ya all-
Thank you. Our family laughs a lot and always have, so we look for the moments when we can still be silly together. It is hard, but laughter is the only way to get through it without breaking.
Very good information Emily page
Amazing Video! Give him my best! Emily, congratulation for dedication and love for his father! A doubt: he has aggressiveness, sexual desire, learning disability? Pardon me by english errors that may have. Thanks!
He did not have any of those issues, luckily.
You do so well with him! I just yelled at this Toni girl she makes me so upset! You do so completely well with him
+Jamelyn Bennett I've launched a campaign on Publishizer to take pre-orders for the book I'm writing about our family's experience with dementia. Just in case you're interested, you can see the full book proposal at publishizer.com/fractured-memories/. And if you'd be willing to help spread the word, that would be amazing!
You doing ok?
For lunch is he saying Hooter's?
LOL, no! There's a fantastic bagel shop called Bodo's that he absolutely loved.
How cute is he.
Arlo Guthrie lol
Hello Emily,
I don't know if you will see this or not, but I wanted to thank you for sharing this video. I was assigned to watch it for my Adult Language Disorders course. I am a grad student at NCCU studying to be a Speech Language Pathologist. I also live in Roxboro.
I am so sorry for your loss!
Thanks again for sharing!!!
That's so cool to know it's being assigned for course work. That's one of the reason's I've kept the videos up - I'm hoping it'll be a good resource for people. Thanks for letting me know!
And if you see this, please thank your professor and let them know (in case they don't already) that there's a whole series of these videos so you can watch the progression of the disease and his aphasia.
sigh im 32 and i strongly suspect i have ftd......and it might already progressed to a moderate stage already......
are u telling me im going to end up like that.....with barely any cognition left?i dont want to appear like i barely have any humanity left,asking simple questions and having some kid tell me very good like dora the explorer after answering every question wtf.....
Please go get checked out by a doctor. There are a lot of kinds of dementia, and a lot of causes, and some of them are treatable. Don't wait. Here's a little solace for you: my dad was not unhappy in his final years. While we did change how we spoke to him, he responded well to it, and he was always up for hugs and kisses and love - so he was full of humanity.
@@emilyanddad thanks for responding so quickly....that is the problem.....I dunno what to tell u,if that is more terrifying or reassuring at the same time.....I mean I don't want to spoil any illusions u might have intentional or unintentional......but that just means that the mind has already eroded away so much,that it does not have barely any memory or knowledge or cognition left......it is basically unaware of what is happening to it......I'm pretty sure if there was even any brain cells left,the person would be screaming and screaming endlessly in abject terror and sobbing uncontrollably.
And it's already happening to me,I don't understand why.....I'm already experiencing it,it is the most bizzare thing.....it's like parts of my brain is degraded away or something,it simply doesn't feel anything,except maybe anxiety........most people when faced with such prospects,would be in deep depression and Ruminating constantly and contemplating suicide....at least most normal people would,but it's like my mind is just unaware and unconcerned or it doesn't know how or it's supposed to.....u know like a computer or robot that has lost part of its memory and programming....I still have some of my cognition and awareness and intelligence left but the brain doesn't work normally like it should......
I'm like a dead man walking,but the brain is like a half vegetable zombie and isn't aware of it......great......lmao......this is what becoming a zombie feels like,all I'm missing is the insatiable list for human flesh and brains and a highly transmissible disease.
They should just call it frontozombification.
@@jont2576 I really hope you'll talk to a doctor ASAP. Hang in there.
@@emilyanddad I notice ur earliest videos was in 2012....what were ur earlier interactions with ur father like?do u have earlier videos?
@@jont2576 Unfortunately, I don't have any videos of when he was still in the early stages. He was fairly volatile early on because he was aware that he was slipping. If you'd like more details about how things progressed following his diagnosis, you can find my book on Amazon: www.amazon.com/Fractured-Memories-Because-Demented-People-ebook/dp/B06XG474B8/ref=sr_1_1?crid=1YRKNQIIC68UK&keywords=fractured+memories+emily+page&qid=1636502117&qsid=145-8931035-1640329&sprefix=emily+page+fractu%2Caps%2C261&sr=8-1&sres=1366315413%2C1737508370%2CB078T2R64C%2CB00H2VOSP8%2CB07Z5MH6BW%2CB091MFRVVM%2CB06ZY7S5G1%2C1939472016%2CB07893FMR7%2CB089F5D1CM%2CB08YDKDBL9%2CB08JGHQ753%2C1950013316%2CB07ZZFS6F6%2CB019ECUCSO%2CB01JIKQDPS
Emily is there other videos of your dad? I don't see any when I look . Thanks
I actually looked again and found them.
There are a few. If you read the description of this video, there are links to the prior year's video and the following year's video, as well as a link to the book I wrote about our journey.
@@emilyanddad Yes I did find the others. Thank you Emily. I watched the memorial. Sad :(
What a special guy you had ! Looked like a great Father and musician!
I suffer from repetitive traumatic brain injury (aka CTE), with similar symptoms.
Yes, I would imagine there are a lot of symptoms that match up. I'm so sorry you have to deal with that burden.
Dear Jeff, you must be a lovely soul taking the time to write a message to Emily. Your so kind. Regards Katrina
Seeing this is like looking at my dad.
Sorry to hear that, Scott. Hopefully he still laughs.
Best wishes. I lost my mom last year.
+AnneM T Thank you. I'm sorry about your mother, though. It's a brutal disease.
Was he aware of his condition or did he not know?
He was aware when he was in the early stages. He had a great psychiatrist/therapist who helped him get through. But by this point, I don't think he knew anymore.
@@emilyanddad thank you for the reply. That's goof he has a great therapist. I hope they find a cure for this soon so no one else has to deal with this. It's an awful way to live and I have nothing but respect for how your family treated him so kindly. But thank you for the reply. I was wondering if he understood or not. Have a good day
Just watching this today.. my husband was diagnosed last November.. I see this was filmed in 2014... may I ask how his progression has been??
Thank you 🙏🏼🙏🏼❤️
I'm so sorry to hear about your husband. If you check out the description of this video, you'll find links to the prior year's video and the following year's video. He passed away in 2016. Again, I'm so sorry that your husband was also diagnosed. Hang in there, try to find the bright moments and hold onto those.
Emily Page
Thank you Emily... Ive noticed a change in my hubs personality for last 5 years.. (we've been married 40 yrs.).... I have get proactive with therapy for myself... it seems like this disease is harder on the family,.. loosing our loved ones... Was your dad at peace?? I'm so scared... thank you again❣️
Tricia
Traverse City, MI.
@@triciabarrett9621 You should check out my book, because it documents our whole journey: www.amazon.com/Fractured-Memories-Emily-Page/dp/1366315405/ref=sr_1_1?ie=UTF8&qid=1488216405&sr=8-1&keywords=fractured+memories+emily+page But to briefly answer your question, eventually he got to the point where he didn't know that he anything was wrong with him. The early years were hard because he could tell that he was changing, but eventually he progressed beyond that. I'm really glad you're considering therapy. That was crucial for us.
My wife is 58 and has FTD. She has the language variant and lost all of her speech, so it's hard to tell but I think she is about at the same point as your Dad was in this video. Sorry for your loss, and unfortunately I do know some of what you went through. Also I just bought your book. I noticed you were in Raleigh so I told my daughter about this video and the book. She asked me the name of the book and when I told her, she said "Emily Page? I have that book. She gave it to me. She did my tattoo." Thank you for the book, your art, and for listening to my daughter.
My father has the same disease. It's hard... I wish I could handle it like you did. I can barely stand being near my father.
+Alegra Chong It is incredibly hard, but I promise you that it's worth sticking around. I've lost enough people in my life to know that you don't want to regret not being there when the going got rough. You can't make amends when they're gone. Do your best to see him as often as possible, even when you hate it. Someday, you won't be able to see him at all and you'll wish you had even the diminished version of him still around. Hang in there. You have my sympathies.
+Emily Page Thank you! I will try my best. I wish you at great 2016 ^^
+Alegra Chong I've launched a campaign on Publishizer to take pre-orders for the book I'm writing about our family's experience with dementia. Just in case you're interested, you can see the full book proposal at publishizer.com/fractured-memories/. And if you'd be willing to help spread the word, that would be amazing!
Emily Page Oh wow! That's amazing! I'll see what I can do!
+Alegra Chong Thank you so much!
Going through this with my mom, its heart breaking watching the decline.
So sorry that you're facing this with your mother. Sending love your way.
Beautiful singing. What an awesome family ☺️
There's hope yet.
+Dare Tan I've launched a campaign on Publishizer to take pre-orders for the book I'm writing about our family's experience with dementia. Just in case you're interested, you can see the full book proposal at publishizer.com/fractured-memories/. And if you'd be willing to help spread the word, that would be amazing!
Sorry, I don't see the value here. He is not aware he is being filmed and that this will appear on RUclips. He is incapable of giving permission for a very personal intrusion. The prompts and "praising" for his "correct" answers are humiliating. I cannot imagine wanting my family to do the same to me if I eventually have to live with dementia. (The people doing the filming should also search themselves as someday they may be living in this condition - would they want this to happen to them?) If people want to learn about dementia, they can do so without this intrusion on a man's personal life.
Actually, we DID have his permission to do this. When he was diagnosed, he said he wanted to help other families dealing with this disease since there's way less out there about it than about Alzheimer's. We took him yearly to be interviewed by med students when he was still capable of it, so that they could learn from him. And we started doing the videos for two reasons: 1) so that other people - particularly med students (his neurologist teaches around the world and has used these videos in her lectures) - wondering how Frontotemporal Dementia progresses can see it, and 2) so that his friends who lived far away could see how he was doing. Your statement that we're humiliating him reflects on your own stigma about mental health and dementia. He has no reason to be humiliated. He has done nothing wrong. He is just functioning at the level at which he is capable. You're choosing to judge him and look down on him for that, rather than embracing him where he is. And he was always happiest when we were encouraging and praising him, for obvious reasons - something that you wouldn't know because you never met or interacted with him. And finally, do you really think that we haven't considered what it will be like when/if we get dementia? Believe me, I've thought about it A LOT. I could inherit it. It's paralyzing sometimes. But I'd want my misfortune to be used for something good for someone else. So next time, before leaving nasty comments on a stranger's video, ask yourself: Is it kind? Is it necessary? If it's not, please don't ruin someone else's day when you don't know the full story.
@@emilyanddad I wasn't aware of all of this background when I made the comment and appreciate your correction.