Having read a few hundred comments, I thought maybe I should jump in. Chris is still hanging in there. He got married and is living in Oakland. He has not filmed any more of his journey and has become more symptomatic with the passing years and can no longer work. He has not lost his sense of humor and continues to "live his life" as his dad said in the film. The purpose of the film was not to make Chris look good or feel good about decisions that were made. He just wanted to show the disease in all its naked brutality. This disease is too big for most people, for most families. People don't always have the best judgement or even the mental and financial resources to do much. They come face to face with something that cannot be beaten, is remorseless, uncaring and inexorable. Sooner or later, it wears you out, grinds you down and snuffs you out. Chris wanted to show all the warts, including his own. If you got mad, if you cried, if you were overwhelmed, disgusted, appalled, put off or otherwise had a visceral emotional reaction, then the film was successful. If it contributes one iota of energy toward the impetus to find a cure, then it was successful. Nobody, except maybe a few people hired to do editing and graphics made any money off this film. Maybe the equipment rental people made a few dollars. For Chris and for the family and many close friends, it was simply a hole to pour money and energy into for eighteen years. Was his mom used? Well, weren't we all? As a rap artist whose name I cannot dredge up said, "If you are not being used, you're not being useful." There is no happy ending, not yet anyway.
@imachristian28872 жыл бұрын
Thank you for the update. No doubt anyone who watched part, or all of this film experienced at least one of the emotions you mentioned. For 40 years, I have worked in health care as a nursing assistant. Never have I heard of Huntington's Disease. I am now going to research to learn more about where it targets the body, starts out and such. It appears to be neurological? IMHO, the film has successfully done, what it was intended to do. Because, if it can make a difference to only one person, it makes a difference. It has made a huge one here and it really matters to me. Thank you everyone involved for the film," Huntington's Dance" Does anyone have info on where, or who, rather, the name of the disease originated? I'd like to start research from there.
@Madamegato2 жыл бұрын
That anyone could say anything negative about this is beyond me. Unflinching was the word that kept coming to my mind, and that is what a really good "slice of life" documentary should do. Raw, real, and absolutely present. Chris gave us the human experience here and I know I'll be thinking of him and his film for a long time to come. I only really knew the name of the disease, not what it did, and him showing it gutted me. It brought up our healthcare system without even needing to point it out and just how we fail people who aren't rolling in the mega-millions, but at the same time, had me looking at the importance of self-reliance coupled with relying on others. I hate that Chris is going through what he is and can only hope that he lives on his own terms and dies by them too. We should all get that dignity.
@LP-hs6yz Жыл бұрын
Thank you Mike. I searched and could not find an update on Chris. Just found your post. Heartfelt gratitude.
@lorriewhite7886 Жыл бұрын
I am beyond words. This film, this family, this man has made an unforgettable place on my heart. My brother died in July of 22 from ALS and I thought that was the most insidious disease but it is not, Huntingtons is. Thank you for this raw look into this disease and its effects not only on those who have it but those who have to watch the ones they love be swallowed by it.
@donnatorres7932 Жыл бұрын
GOD BLESS, Chris is doing the right.
@dori4567 Жыл бұрын
I am a nurse and work in a long term care state facility in the Appalachian mountains. We have had several Huntington’s patients in the years I have been there. It IS a cruel disease , and I’m sure even crueler when it is your own mother writhing on the floor. I am so impressed by the bravery it takes to care for your mom at such a young age and then to find out you too will get this disease. Prayers and good thoughts are being sent to you and your family Chris. Thank you so much for sharing your story , most of the world has no idea what this disease looks like , many in the healthcare field have never even seen it. Thank you for the sacrifices you and others have made to bring this documentary to the world. ❤ Also, Chris , if you ever read this ……. The way you spoke to your mother early in the documentary was so amazing. You spoke with love and understanding and patience. You had a maturity way beyond your years, what a gift of love you gave your mom. It was truly beautiful to witness❤️
@paulinegallagher1675 Жыл бұрын
He abandoned his poor, stricken mother for years on end. She had nobody to help or even keep her company now and then. I wept, watching her suffer alone. He visited briefly, got angry, and again deserted her. God bless her. God bless her absent son, too, as he lives with this awful disease. He may well be surrounded by love and care. Both were withheld from his lonely mother.
@denisew.3447 Жыл бұрын
@@paulinegallagher1675 If I were in her shoes I would want my son to go enjoy every minute of his life. Especially knowing that his life might be cut short by that dreaded disease. Don't you think his mother was happy he was living his dreams? That is what most mothers want for their children more than anything else.
@ginacable5376 Жыл бұрын
@@paulinegallagher1675 I'm a bit late but I agree his behaviour was appalling.
@paulinegallagher1675 Жыл бұрын
@@ginacable5376 It was, as he was all she had in the world, and he left her alone to suffer. The effusive praise he's getting here astonishes me. Did we all watch the same film? He didn't speak to her kindly. He was only just controlling his anger and resentment at her pitiable state. Never in a million years would his mother have abandoned HIM had the situation been reversed.
@ginacable5376 Жыл бұрын
@@paulinegallagher1675 we must have watched a different film lol. I found him very unlikeable he didn't seem to be much better in his personal relationships either. He's now lauded by the Huntingtons society
@GC051006 жыл бұрын
This really spoke to me. My husband died in Feb 2015 and his brother a couple months later. Now my youngest is showing signs at 36. Lord have mercy on us all.
@GC051006 жыл бұрын
ty
@taleandclawrock26064 жыл бұрын
Im so sorry for your deep losses. I wish you courage , and the happiness of precious moments.
@lanamartinez7373 жыл бұрын
I'm so so sorry. My mother-in-law , her sister, her nephew, & her brother all passed away from Huntington's. So hard to watch this. Brings back memories of course but I need to know I'm not alone in my fears today..i think one of my kids has it & it breaks my heart in a way I can't explain.
@rmi2223 жыл бұрын
@@lanamartinez737 Did you choose to have children on purpose or was it accidental? My father and his mother have HD, I have not yet been tested. Found out I was pregnant at 7 months and am terrified for my baby’s future but it’s too late to terminate the pregnant. I’m also too scared to be tested. Any advice?
@catherineford14173 жыл бұрын
I am so sorry
@kathleenwest77972 жыл бұрын
I was recently diagnosed with early Dementia. Stopped working, stay home cooking, cleaning and taking care of our cat rescue. Have pulled away from my friends because I don't feel like myself. Get confused using self check out in stores, and have thought an item was scanned but it was not. Both my parents passed on. Mom in 1995, Dad 2000. My husband's side of the family knows as well as my brother. Your story touched me as we both are facing the unknown. I just keep moving forward. I too have plans made for when the time comes to take my life. Once my quality of life is no more will be ended.
@sheshlane2 жыл бұрын
I'm so sorry to hear what your going through.
@sheshlane2 жыл бұрын
Kathleen West 🤗
@kookietherapy9398 Жыл бұрын
🌸💗🌸💗🌸💗🌸💗🌸💗🌸💗🌸💗🌸💗🌸💗🌸💗🌸💗🌸
@tabithaedwards745 Жыл бұрын
My mother was diagnosed with Huntington's Disease as was her mother. Painful to see it change a loved one. I know the deep depression I fell into when she was diagnosed. Just know you are not your diagnosis. I know it's scary to have an unknown when that's all you have for the future. Try to stay busy and possibly look into a change in diet might help with clarity. Keto or carnivore have some healing properties. Sending 💕
@bdlimea7018 Жыл бұрын
How are you doing Kathleen? I'm so sorry about your diagnosis. ❤
@Wally943 Жыл бұрын
Before this video I knew the basics of Huntingtons. Watching the video of your mother’s uncontrollable movements, almost unintelligible speech, and the potential for harming herself accidentally was almost unbearable. I almost stopped right there. So glad I did not! Chris, your courage in the face of what lies ahead, your goal of a skilled nursing facility dedicated to people with HD, is unmatched by anyone I know. You are a credit to both your parents, having their intelligence, creativity, forthrightness. Oh my heavens, your mother’s paintings…such talent! Water color is the most difficult medium to paint in, and she excelled. Please stay the course, keep living the life you want, following your very loving heart.
@sophie463611 ай бұрын
Dear Chris Furbee, its five years since you posted this amazing film and its beauty and power have not diminished. I had never heard of Huntingtons and i clicked on it because of the hauntingly beautiful picture of your mum on the thumbnail. I watched the whole film absolutely transfixed. I feel changed from watching this. My best friend died of Motor Neurone Disease and i never imagined there could be a crueler disease than that, but then theres Huntingtons, surely the most brutal disease on earth. You have faced it with grace and dignity and are truly one of our generations most unsung astounding human beings. I wish your last years be as comfortable as they possibly can whilst you complete your dance with Huntingtons. Your mother will be waiting for you in the field of flowers 💐 ✨️ 💛
@marciajones29932 жыл бұрын
What a cruel disease. Seeing that lady left on her own, was heartbreaking. Glad she’s at peace. ❤️🕊
@paulinegallagher1675 Жыл бұрын
Left on her own, exactly. Made me cry and cry for her lonely suffering, years on end.
@jennifermccrady9505 Жыл бұрын
You are a gorgeous man, you have a beautiful soul. Born and raised in West Virginia. I took care of my half sister who died at age 32 in a nursing home. If you need care and support come home and I’ll be happy to help you. Life on this earth is only a fraction of our entire being. ❤ thank you for doing this
@wheatstonebridge2 жыл бұрын
I felt like I grew so much in just 2 hours watching this doc. What a handsome, smart and powerful person Chris is. I hope he knows what a gift he is and how much he's helped people and how loved he is.
@drmichaelshea Жыл бұрын
Congratulations on a life well lived. You have helped many people with a tragic genetic accident. Fortunately for all of us, no disease outlasts mortality.
@guavaB52 Жыл бұрын
As I'm delving into my genealogy, I'm discovering all my relative's stories in my grandmother's branch with Huntington's. My doctor said something about it stopping with my Dad. One cousin jumped off a bridge right after being diagnosed with HD. Thank you for sharing your story with us.
@NebulaBull Жыл бұрын
This is what we as Americans should be consuming as *reality TV, real, raw, humans at their best and at their worst but putting all their emotions forward in a healthy productive way is what all of us should prescribe to. *THANKS TO THE ENTIRE FURBEE FAMILY AND THEIR FRIENDS FOR THIS*
@debishaw9355 Жыл бұрын
Huntingtons chorea. . I remember as a student nurse over 40 years ago seeing this disease. It seemed like she was still thinking clearly, but could not control her movements. Thank you for this documentary. I am retired now and there is so much insight in this story.. Chris, you may not know it, but you are amazing. I’m sorry you are going through this…😢. My prayers for you, Chris!
@grayskindablue Жыл бұрын
God, that song is so hauntingly beautiful and sung with a mix of emotions I can’t even quite name. The second half could be applied to generational trauma. That and the scene where his mom is trying so hard to hug him just broke me a little. I’m the youngest son and also left home ASAP… gonna call my mama later today. Thank you for the vulnerability you experienced to make and release this. It’s powerful and so is your will to fight.
@michellehitt1976 Жыл бұрын
If you don’t mind me asking. Why’d you leave home asap?
@paulinegallagher1675 Жыл бұрын
I hope and pray that you did call your Mama. Keep calling! She needs your love.
@margarethill8100 Жыл бұрын
As I read the update about Chris, I was thrilled that he found love and made the commitment. She must be a very loving person and willing the take a leap of faith and not deny herself happiness with the right person. Congratulations to both of you!
@Pakalani032 жыл бұрын
Chris Furbee is a living testament to his mother. I watched this film because my husband is in Vermont helping his brother Michael wrap things up at his house. Michael was fortunate to develop symptoms at a time when there are so many treatments and experimental drugs to help him. And he receives all of his help from Boston Hospital, a leader in the cure and treatment of Huntington's. My husband was the only sibling out of 4 who took the genetic test. Thankfully, he was negative; he already has lived with CLL for almost 25 years. His family believes that their father had Huntington's but never was diagnosed. To everyone with this awful disease, live your life like Chris and my brother-in-law Michael. Someday there will be a cure.
@katydid16002 жыл бұрын
Patricia Loss What is CLL?
@Pakalani032 жыл бұрын
@@katydid1600 CLL stands for Chronic Lymphocytic Leukemia. My husband was diagnosed when he was 42 years old. This type of leukemia can turn into lymphoma or any kind of cancer or blood disease. He was told he'd have 10 years, but he never got chemo or any traditional meds. We've relied on alternative medicine and he just had a knee transplant 7 weeks ago and is riding his bike to physical therapy. He's in good shape. I hope that answers your question. Sorry it took me so long to reply.
@katydid16002 жыл бұрын
@@Pakalani03Thank you. Sounds like your husband is doing well. It's great you found alternative medicine that worked instead of chemo. Praying for both of you. I'm sure it's been a hard journey.
@Pakalani032 жыл бұрын
@@katydid1600 Thank you so much.
@kathwhit6462 Жыл бұрын
+9P999p999l999+
@JaimeMesChiens2 жыл бұрын
Oh Chris, this is brilliant. You really honoured your mother so dearly.
@kathylynch9732Ай бұрын
What an incredible documentary.
@23Sinbio Жыл бұрын
This is amazing. My ignorance is apparent as on the surface, she looks like a crack addict to me. I would never have associated her behavior with a neurological disease. Thank you so much for sharing this heartbreaking story. I learned so much about her struggle with this condition and her son's incredible compassion and struggle as well.
@emilyvaughan761510 ай бұрын
Good for you! Glad you posted your comment! Together, we'll make it!
@heidi165111 ай бұрын
What a beautiful man. Thank you for sharing your story and raising awareness for Huntington's. ❤🙏
@starlily33573 жыл бұрын
My aunt had this. She had 5 children and all died of this horrible disease 💔 your mother reminds me of my aunt. I had to really look close to make sure it wasn't. Thank you for sharing your story with us.
@monpayscanada2 жыл бұрын
I watched my mother’s best friend lose 5 of her 6 boys to this monstrous condition
@beckwil0852 Жыл бұрын
I don’t know how to offer the praise due. I am numb with awe after viewing this film. Mr. Chris Furbee is the most remarkable human being in every aspect. He turned his tragic diagnosis into a winning and spiritual journey and gave himself to the job of caring for others. I am without the deserved words. Thank you for this exceptional and inspirational piece of art.
@giselevallee1224 Жыл бұрын
This has been such an informative and personal documentary. You have aged with dignity and grace. Your Mother would/is very proud of you. One thing that troubled me is why your father was not more involved. Your parents must have gone their own ways. Your mother was a beautiful woman. I think she kept people away as she wanted to keep her dignity by not having people see her in the condition she was in. You were kinc and brave to help your Mom get to a place she would be cared for. Prayers for you and hoping your dreams come true. 🙏
@maryriley6163 Жыл бұрын
I am so glad your life has been a success helping people understand Huntington’s.
@connie83385 жыл бұрын
I am a teacher of Biology and always have shown my students your interview on CBS from many years ago . Every semester my students watch that short clip and it brings them awareness of this disease. One of my students sent me this link, after the assignment and I am so grateful to you for sharing your story. When I teach my students about genetic diseases I insist they see the raw human side, not just the clever way science uncovered what causes it, but real people having this disease and the affect on everyone in the family and all caregivers. That is what is needed in this world, caring and compassion. I am so touched by your efforts and determination to help make us aware of the need to help others everyday. I hope soon science and medicine can find a cure to stop the suffering and progression of the disease. I will keep sharing this every semester with my students. Wishing you everything of the best. Namaste.
@stacieortiz84575 жыл бұрын
Thank you for bringing HD to your students. The more we talk about it and bring awareness is very important with finding a cure! Being gene positive myself, I really appreciate your support 💙
@katehenderson81942 жыл бұрын
@@stacieortiz8457 if it’s a single gene mutation perhaps the new CRISPR technology could help idk
@carolginsberg662 Жыл бұрын
Yes! I was hoping the same thing!🙏🏼
@sineriafrankenstein7316 Жыл бұрын
Many years ago I had a friend and neighbor who had Huntington's. His mother had died of the same disease. He lived alone in a tiny rv. He remained independent for a very long time, worked at a farm, went for walks and bike rides. He wore a sign that explained that he wasn't drunk and that he was suffering from Huntington's Chorea. People in town complained about seeing him walking or riding his bike, often calling the police. He was unjustly targeted simply because his mannerisms were different. He used to come visit my kids and I several times a week and we'd visit him when we stopped at the farm to pick up hay or grain. Then suddenly he was just gone. We have no idea what happened to him. I know people complained about him, complained about his trailer, complained about his failing hygiene. But he was still working, coherent and mobile, just filthy. I've thought of him often over the years never knowing what happened to him :'(
@anopoabednego6173 Жыл бұрын
Did you bone?
@adairadair9490 Жыл бұрын
Very sad beyond words shame
@Dontmind8 Жыл бұрын
@@anopoabednego6173 What is that question for?
@collettewhosthatgirl1330 Жыл бұрын
I would of dug into that and found out. You still can!
@mindylawrence375311 ай бұрын
@@anopoabednego6173what do u mean
@patriciaschmitt6448 Жыл бұрын
Chris you are an amazing person for everything you are doing - your mom was such a beautiful woman. I'm so happy that you have taken this cruel disease and made it your mission to continually back it into a corner and help others live their lives with independence and dignity. You have come to realize that you are very loved and important to so many others and have made great strides to keep well and teach others to do the same. You are force to be reckoned with and I believe your strengths come from your mom and the situation that put her through hell. Good luck to you Chris.
@cooksmary Жыл бұрын
All the best to you Chris. I was diagnosed with multiple sclerosis in 2004 and have been having some truly nasty symptoms recently, after a number of years with virtually none. I saw in your face what I see in my children and did not understand what it was. It has to be hard for them to see their mother go downhill. I try so hard not to show any signs of distress and try to appear as normal as I can, while I am now dependent on a walker to get around even in my own home. It is like this illness has hammered a wedge between us and I cannot even get them to look straight into my eyes anymore. I did not know what that was before watching this film. I thought, this is my problem. I just want your love. Now I know, they are scared of what this is going to do to me and how they are going to cope. Yes, it affects the whole family and it was you who brought this out for me. Thank you, dear Chris. I wish you all the good in life and to enjoy every moment you can. Thank you for this beautiful, heartfelt film. Yes ,I cried, and my heart was profoundly touched. Hang in there.
@hertribe1978 Жыл бұрын
Typing as im crying 💧the huntington dance i found it profoundly, well written, narrative off the charts. Chris spoke purely unedited spoken from his heart.
@NickanM5 жыл бұрын
*Powerful and heartbreaking at the same time. One of the best documentaries I've seen in my 50 years on this earth. Thank you for doing this film. I am also very impressed by the way your father is supporting you, not being afraid to speak openly about the suicide option, which is a taboo to talk about in most situations.*
@huntingsdance5 жыл бұрын
Thank you I am very proud of the job our team did. My dad has been a great person and still helps me today. Hope you are well!
@cooper5626 Жыл бұрын
I feel the same. Honestly it should be winning awards if it hasn’t already.
@NickanM Жыл бұрын
@@cooper5626 Absolutely. I still rate this documentary as no 1 now three years after I watched and wrote my post. 😀
@hazel19711 Жыл бұрын
As a proffessional who cares for people with huntingtons this film is invaluable. Thankyou
@kimberlyfetterman8666 жыл бұрын
A very real and raw emotional movie about a families journey with Huntington's disease. Thank you Chris Furbee for allowing other people to a small glimpse of this disease. The question is not if but when we will find a cure.
@judyivie41813 жыл бұрын
RIP Rosemary
@judyivie41813 жыл бұрын
I wish for a cure.
@margarethill8100 Жыл бұрын
It must have taken such courage to tell this story over the course of 12 years or so. Just filming your Mother must have been heart wrenching. It doesn't sugar coat the reality of this horrible disease, and the long term effects it has on the person with the disease and all those that love them. Your mission to open a home for people suffering like your Mother did is to honour her and help you go forward in your life. I wish you continued health as you care for your body and spirit. Thank you for your selfless contribution to educate laymen and professionals about Huntington's disease.
@joniatoms9798 Жыл бұрын
Thank you Chris and family for sharing this story. I did cry a few times. I’m a nurse if 38 years and was a director of nursing at a nursing home for a few years. The memory of the young lady we had in our care, is indelibly on my heart and mind, as she had Huntington’s chorea she looked a bit like Chris’s mother, which is haunting. During my pregnancy, 31 years ago, was stricken with fibromyalgia, and though there’s no flailing of extremities, there is chronic pain and disability. And as such, I can relate a bit. I’m so glad you know you are living you best life. 💞💞💞
@madeleine7411 Жыл бұрын
This is the most honest and the most compelling film I have ever seen about this ruthless disease. It is also, and much more importantly, the story of a man who faced his fears head on. That is rare and I have nothing but admiration for this handsome, funny, brave guy who decided to live. I am glad he did. We all benefit from having his on Earth.
@kathymullins63582 жыл бұрын
Chris it broke my heart when you learned you had the Gene. There should be more people on this planet with the soul you have. I hope your life is long and happy and ty for taking us down this journey with you as we cried with you, God Bless You.
@paulinegallagher1675 Жыл бұрын
This made me weep. That poor woman - all alone in that house, facing a truly horrible and dread disease. How did she cope without anyone to help her, or to tell her they love her? It's heart-breaking. May God bless your brave soul, dearest lady, and all those you love.
@Allegra1111 ай бұрын
It's people like Chris who give me hope for humanity. Thanks to him and his beautiful mother for making the world a better place for others.
@jeanemiller67026 жыл бұрын
Chris, thank you so much for sharing your heart-felt documentary. It took me on an emotional roller coaster ride this morning, one although I’ve been on many times in the past, your documentary took me a new one that had me looking through the eyes of someone learning their risk for getting HD and the turmoil they go through afterwards. I cried, I held my breath, I cried again [several times] and was frozen to the screen until the very end. It’s no surprise why you won so many film festival awards - it was a labor of true love and I’m sure one you made both your Mom and your Dad very proud of you! Love, Jean Miller
@jesussaves18274 жыл бұрын
Turn to Jesus He loves you very much, He is the God of miracles, i was ill for a long time, but the doctors couldn't really help me, i don't blame them there was only so much that they could of done for me, Then Jesus gave me a miracle and healed me, God has done amazing things in my life and in the life's of people i know and love, He can do the same for you and yours, When you need Him call on Him, The bible tells us in Romans 10:13 For whosoever shall call upon the name of the Lord shall be saved, He is the God of comfort and will be there for you when you call on Him, God saved someone i love from an illness leading to death, There is nothing impossible to God, Its as simple as accepting Jesus, and Trusting Him for your Salvation, He is the healer of the body and Saviour of our souls, And if you truly seek Him Jesus will answer you, i know this because He answered me when i called out to Him,
@stepht75082 жыл бұрын
@@jesussaves1827 Thank you
@blossom1643 Жыл бұрын
@@jesussaves1827 Thank you for your testimony. This handsome young guy really has a heavy load & his maturity is amazing to me. I remember myself at that age & I couldn’t hold a candle to him Bless his Heart. I would like to trust God but it’s so hard. I see things like this & it’s hard to understand. ❤
@dawnschrader5687 Жыл бұрын
Hello Chris , My husband had a step sister who had Huntington Korea . She was one of the youngest to have this disease. My MIL had a one night stands, and got pregnant. She started having symptoms at around 12 years old and was in a nursing home for the last years of her life. This disease is one of the worst things a person can have. She passed away in her 20s. I thank you for this film, it was very helpful to me.
@420manvan Жыл бұрын
Huntington’s Chorea
@bethewalt7385 Жыл бұрын
*chorea not korea, maybe you voiced to text and didn't proof read
@ontoyoualways91835 жыл бұрын
Chris.....you are proof that it is natural for children to "run away" from what is hard for them to understand and deal with. Often, we as parents feel we are hated. When in fact it is not the case. You are only human and one person. It is difficult to understand what parents are going through at no fault if their own. Not your fault either. Sometimes we just have to do the best we can to support each other. I guarantee your mom was just happy you were there for her. Nothing more!! She just needed your unconditional love. I doubt she ever expected more.
@jmj53882 жыл бұрын
One of the most unfair aspects of divorce is that responsibility for one’s single parent is shifted to a child or children, rather than to an adult partner. Children are not the natural caregivers of their parents, and they are not necessarily equipped to meet the demands. This man did his best for his mother, in view of his maturity and degree of awareness of her condition.
@susanryman99486 ай бұрын
How on earth could she have gotten worse??!!
@heha43832 жыл бұрын
As a psychiatric professional, Huntington’s disease is the #1 scariest neurological disorder I have ever seen. You are very acutely aware of what you were doing and how you are disabled until the end. You will get Huntington‘s dementia, but that is not until the last few years. It is 100% fatal and affects every generation younger and younger. Eventually children get it, before they can reproduce, and that is how it breeds itself out of families. I had a patient who was 46 and end-stage Huntington’s. Her daughter was 23 and having symptoms, she had just had a baby who was born with tremors. Knowing the progression of the disease, that child will likely die before its mother. I saw this family five years ago, I’m sure the patient has since died, her daughter is likely very disabled, and I would be shocked if her child was still alive or not profoundly disabled. I remember talking to the patient’s daughter and she was horrified that it was usually genetically dominant and she had passed it on to her infant. My patient had been adopted, so there was no way for her to know when she had children of her own she would get this and pass it on. And just like Chris’ mother, the patient never explained to her daughter what was wrong with her and the fact that it’s genetic. Of course the daughter was angry her mother never told her and she allowed herself to have a child. I remember counseling the daughter on next steps for her self since she had symptoms and also for her baby who was born with symptoms. I really hope they are both doing well, but I know there is no treatment so I honestly hope they’re at least at peace.
@michellehitt1976 Жыл бұрын
Oh that’s so sad. I didn’t know babies could be born with that.
@freden9234 Жыл бұрын
Thanks for that detailed explanation. I knew a man with Huntington’s. His mother also had it and had been in a nursing home for quite a while. The man I knew did start showing symptoms earlier than his mother, and died before she did. Now I feel like I understand the situation better. It is indeed a very cruel disease.
@Emeraldeyezphotography6 жыл бұрын
You have done a great job on this film. I am in tears and have happiness for you as well. Your mom is so proud of you and so are we here in the HD community.
@huntingsdance6 жыл бұрын
Thank you Kimberly I hope she would be proud!
@katehenderson81942 жыл бұрын
@@huntingsdance you’re amazing thank you for sharing this
@frangipang19554 жыл бұрын
My brother is in a care home. He is nearing end stage Huntingtons. He was the only one of seven children who inherited it from my father. We had a struggle to come to terms with that. He had a full life. Got married, had two IVF children and has two beautiful grandchildren. He is happy in a home where he is loved and well taken care of. Take care, hope you are doing well. Frangi, England. ❤
@huntsman1454 жыл бұрын
No one is loved in a care home.
@JoeR-t1x2 жыл бұрын
I work at a facility where we take care of all kinds. I work on the psych/behavioral unit. Not all of our HD patients are on the psych unit but we do get a lot of HD patients as they can be very aggressive/combative. I always wish that I could have met or known HD patients before the symptoms.
@HikerInTheClouds3 ай бұрын
You and your mother will forever be remembered, this is a beautiful documentary showing us your life and hers, thank you, I'm so sorry for all you have or had been through, I see u haven't posted in awhile and I really hope you're ok 😢❤
@karyannfontaine8757 Жыл бұрын
I appreciate the people who have Huntington's disease and families for sharing this with us. Awareness is first, medication will be second to bring relief to people. We need research to deal with the genetic abnormality which causes Huntington's. Sometimes the loved one needs more care than we can give them. Rosemary was in need of full time help, even though she was middle aged. Chris was very young to deal with the results of the disease taking a such affects on his Mom
@jadekemp5915 жыл бұрын
Oh Chris this documentary runs so close to home. Thank you for your bravery in sharing your story and allowing others to be reminded that we are not so alone. Wishing you plenty of healthy, happy days to come. Big hugs xx
@karencrecco29222 жыл бұрын
So proud of you, Chris! My friend’s family had Huntington’s, so I know the suffering. You are such a good man! ( Isaiah 33:24)
@victoriariley74902 жыл бұрын
I’m crying I suppose for many reasons. You are a dear son for one and for I cry for her. She is probably long gone and she will never know how this video will enlighten many.but the love of a son for his mother will always pull at my heart strings and give hope back to mothers who are suffering with any illness. If that makes sense.thank you!💜
@tiasara5967 Жыл бұрын
Denial of an illness or disorder is living hell for family and loved ones. My heart turned over when he saw his first symptom. Devastating.
@rna1561 Жыл бұрын
What an amazing story . I'm so proud of you, Chris. I hope you're doing well and thank you for this. ❤️God bless
@BlazingSadles Жыл бұрын
Chris, I hope this finds you doing well! I am sure all who watched would love an update on how you are doing! God Bless!
@kristi.kervin2 жыл бұрын
I wish I could hit the thumbs up button a million times for this video! My heart breaks for you Chris, and yet at the same time is filled with such hope. It seems that in the process of dying you learned how to live and that is something amazingly remarkable. How are you now in 2022?
@davehodgson66686 жыл бұрын
Powerful, sad, truth, incredible. Chris, thank you for sharing your story. Continue the fight to find a treatment or cure.
@huntingsdance6 жыл бұрын
Thanks Dave !
@kookietherapy9398 Жыл бұрын
The CURE appears to be: End the Blood Line. Chris' Mom KNEW NOT to have another child, it altered her marriage, but her sacrifice was Huge in being resonsible to not pass it onto more children. I am certain it broke her heart too.
@gingerbee9829 күн бұрын
Truly remarkable and deeply touching story and film. Thank you sincerely for sharing it 🙏💜
@11kwright Жыл бұрын
Chris’s mom was used positively and for the greater good. A story like this needed to be told in its entirety as brutal as it is. I wish money was made out of it so you could have helped with research and perhaps a little for when you need it. It was great seeing Chris find another level of strength and not give into the disease. When he had the gun I was thinking you can’t have people in your lives only to ditch going forward with them when the going gets tough. They’ve been with you up to this point with HD hanging over and clearly choose to move forward with you. Really good to see that through getting healthy and living your life and not festering in the bottom barrel wasting life in waiting shows Chris’s strength. Have done so much good for HD awareness through showing your life and mom. Your mom would be so proud. Her paintings are amasing, I would easily purchase if they were up for sale as can’t express how good and expressive and life like they are. Hope you still have them. This doesn’t touch my life thankfully but now I understand HD. I wish you and your family the very best for the future with HD and all the good you are doing for the future. Your mom and your life a life worth living.😊
@deeannamosley87975 жыл бұрын
This film was like watching my life with my mom i was her caregiver and i miss her so much! Thank you for making this film sending you lots of love ❤❤❤
@jayesimond93014 жыл бұрын
My mother is very stubborn and private bout her terminal illness. But I couldn’t let the woman who gave me life end up living this way, all alone. Glad the prodigal son returned.
@ChumbiShema Жыл бұрын
We watched part of this in my neuroscience class. Thank you so much for bringing attention to this disease and I am so sorry that you had to go through this. Hopefully we can find a cure!
@kookietherapy9398 Жыл бұрын
The cure is to end the genetic blood line. Simple.
@terrifowler9482 Жыл бұрын
Absolutely heartbreaking, yet completely riveting. Such a powerful look into the devastation of this disease and how it affects everyone around it. Thank you so much, Chris, for bringing much-needed attention to Huntington's. And prayers for treatments and, ultimately, a total cure within your lifetime. ❤️
@marilyntape5084 жыл бұрын
This film should get an award 😊💜🇦🇺
@InHitchWeTrust2 жыл бұрын
YES.
@dadycreations1003 жыл бұрын
Beautiful long documentary done by a gentle soul. Wish today Chris is a nice place anywhere he is.
@janetgeller7272 Жыл бұрын
I am struck for the millionth time how different/unique we all are in so many ways. Your experience with HD is and will be your own. I think the severity the disease will have within individuals remains unknown. I look at some who still function very efficiently and independently despite having HD. The different ways we respond to our own and our parents’ aging and illnesses fascinates me. I think “dignity” in the way we live and die looks different for different people and that is just fine.
@terecew65596 жыл бұрын
Chris, I'm so very proud of you! Your hard work and dedication paid off, what fantastic job you accomplished. This film is truly a labor of love to your family and the Huntington's disease community. Thank you from the bottom of my heart for all that you do. My beloved 😇Garry in the heavens above and myself are honored to call you our dear loving friend. 💞
@huntingsdance6 жыл бұрын
Terece thank you for the kind words you know what it took to finish. I miss Garry and am honored to call you both friends! Love to you!
@christinecatelli53585 жыл бұрын
Chris Furbee, you are one of the most beautiful people I have ever "met". Thank you so much for this film. I am so proud of you. My son gets tested for HD in a week or so, and I was comforted by your wonderful life.
@sarahalbers5555 Жыл бұрын
My dad was a Neurologist and had a few Huntington's Disease patients, one of them being Woody Guthrie. This disease is plain damn cruel. Maybe one day there will be a cure for all of these degenerative diseases, it can't come soon enough.
@janetcook3631 Жыл бұрын
I wked for a Neurologist for many years. There are many neurological diseases that are horrible, and patients continue to get worse n worse.
@Wendy-rt5em11 ай бұрын
I can't remember who it was I believe Bob Dillon went to the asylum to visit around or Woody Guthrie and they wrote a song about having Huntingtons
@ash.19755 жыл бұрын
Wow. That’s all I know to say...my heart crumbles watching this and I cannot imagine the pain and fear for this family or ANYONE ELSE who knows the struggle with this ugly awful disease 💔💔 Chris Furbee, you are so brave for sharing this and I want to thank you so much! I am a caregiver and this is one of those diseases that afflicts someone and it hurts so bad not being able to just take it away from them...I just care and love but it never feels like enough!!! Your mother raised an amazing man and YOU should be proud of yourself!!!💕💕💕💕💕
@blauetoile3 жыл бұрын
@Chris Furbee, Thank you for sharing! Its so devastating feeling so alone, distant from the society. My Father and grandfather died with this, Now I have my older sister worsening and worsening before my eyes. Just feel so very desperate and helpless. I totally admire your film and honesty. Wish I was stronger.
@jebbiekanfer884310 ай бұрын
I have watched this a few times. I am from WV even though I left after college I still love it. Also I did my graduate work in molecular genetics. When I was in elementary school my Girl Scout group visited a hospital where one of the patients had Huntington’s disease. I was very curious and found as much information as I could. There really wasn’t that much information available then. I found much more information when I had unfettered access to the medical school library. This is a great documentary that shows both the physical and mental suffering this disease causes generations of affected families.
@laurawilliams5363 Жыл бұрын
Your post is very moving. I understand a lot of what you have been dealing with. I have 2 terminal diseases so I know my life is short. I choose to make each day count for myself and those that are important in my life. In the state I live in with have "death w/ dignity" which allows us to have assisted death. My 2 kids are 100% on board with my desires. You have done incredible things! This film is so important as you open up the ability for so many to hear and see what you go through and those of us that are dealing w/ terminal diseases. You have done an incredible thing w/ this film and what you are doing to provide for those the best care with the facility you started. You are incredible. Thank you and I am sending to you thoughts of peace and calm and the joy of having those that love you around you. We all have an expiration date on us from conception and up and I know our time is limited. Thank you.
@Birdyblue12 Жыл бұрын
As a family filled with this disease, I am grateful to see this, my father, my brother, my sister, my father had 4 siblings out of 14 kids , this horrific disease, I’m trying to take care of my brother right now and it’s hard, helped my mom with dad , 6 years, he died in 08 , and here I am
@lizzzzzzzz4 жыл бұрын
this is one of the best documentaries i've ever seen. i know a family with HD running through it and having born witness to that throughout my whole life, this just really hit home. idk what your health is like now but i hope you are safe and loved wherever you are on your journey. thanks for making this and sharing it for us to watch for free on here. very grateful for that *hugs*
@lauratournade28033 ай бұрын
This film moved me to tears and prayers of thanks for how blessed I am and asking for a bit of the strength, grace and wisdom that this family demonstrates throughout the years of filming. I am so impressed by the love, understanding and positive actions they displayed in the face of such a devastating disease. Thank you for having the courage to do so. God bless to all that are dealing with this devil you live with here on earth.
@stevesimmons66854 жыл бұрын
Having just finished your documentary, I can’t actually speak right now. Incredible story.
@shelleymeyer493310 ай бұрын
Thank you Chris for sharing her and your story
@aye70aye2 жыл бұрын
Chris this was absolutely spectacular and so powerfully moving. You are a wonderful human and have already had such a positive impact on raising awareness and understanding of HD. Your whole family must be so proud, sending you much respect from the U.K, Love Jessie x
@tsmith96492 жыл бұрын
He should be ashamed to abandon his Mother in this horrible horrible desperate state. Having somene come in for 2 hrs a day is useless....why cant you put her in a home where she will be cared for???HONESTLY
@BlazingSadles Жыл бұрын
@@tsmith9649 obviously you didn't watch the whole documentary! Do not be scolding anyone you have not walked a mile in his shoes!
@tsmith9649 Жыл бұрын
@@BlazingSadles You are right, I hadnt watched the whole show before I made this comment, as the documentary went along I made a couple more comments that were not s negative, I did feel bad after I kept watching for what I said. You are right, I should not judge someone unless i walk in their shoes. Thanks for the reminder, you are 100% right
@LynCarmony10 ай бұрын
My heart is so full; I hesitate to try to express my gratitude for this film. I had no knowledge of Huntington’s, no experience like Chris has now given me. This film is so heavy and meaningful and amazing on so many levels. I was sick when it seemed Chris would end the life that he now has used to the utmost. I am thrilled he is still doing the dance and the dance has not done him in! I pray that Chris will someday make another film, giving God the glory. God bless you, dear man.
@Magnificent_Mustang Жыл бұрын
Thank you. Thank you. Thank you. Chris, you have done an immeasurable service to so many by creating and sharing this film. This documentary is so important.
@shellyniles3675 Жыл бұрын
I had to watch my mother deteriorate. Congestive heart failure, dementia, emphazemia. The most wonderful, beautiful woman full of life and love. Taken from us. She was awesome❤❤
@audramuth41472 жыл бұрын
Does anyone know how Chris is doing now ?? I’m 2022? I’m shocked at how his symptoms didn’t begin showing until much later in life . What a blessing that is ! Hopefully it’s still about the same … 10 years later …
@ireneyoung86962 жыл бұрын
Thankyou Chris for opening your heart.You are a very brave man.I wish you the cure you are hoping for not just for you,but for the world.
@lynnmarie1943 Жыл бұрын
What an amazing film! Your mother had such a sweet voice filled with tender kindness. She raised a wonderful, intelligent, kind and caring son. Thank you for fighting this relentless, monterous disease in such a courageous way, while passionately educating the world. My nephew and many of his fathers family suffer with this illness. It tears my heart apart and sometimes challenges my faith in a loving Creator. But I continue to believe there is a purpose and those afflicted are the strongest of Heaven's Souls.❤
@haleighfreese69565 жыл бұрын
Watching him receive the results from the DNA tests took me back to how I felt and reacted hearing I was gene positive, one of the hardest things I’ve ever had to hear.
@danielsmith7752 жыл бұрын
You're not alone
@katydid16002 жыл бұрын
Haleigh Freeze I hope your doing well.
@gailwood14512 жыл бұрын
I’m very sorry, & I understand how devastating it is. I have a terminal dementia diagnosis, along with several system wide terminal diseases. I’m in constant pain. The other terminal illnesses are advancing rapidly. I can’t do anything unassisted anymore. I have almost zero quality of life. I’m looking into MAID options in Switzerland.
@nyla2408 Жыл бұрын
@@gailwood1451 💓
@nyla2408 Жыл бұрын
@@gailwood1451 💓
@jeannezimmerman70343 жыл бұрын
Horrible, awful disease. Have seen it in an in-laws family member. Its really a tough ending. Great informative video, Chris. I'm so sorry for your diagnosis. I can't imagine what you're feeling. Your dad is such kind man.
@seanmgr13 жыл бұрын
Tough to watch, could not stop crying, took me back to 1987 when I left California to go home and care for my mom.
@paulinegallagher167514 күн бұрын
Thank you for uprooting, going back home and looking after your mother. The poor mother in this heart-rending film was left completely alone for years - by her son, Chris.
@marthaalexander4441 Жыл бұрын
It is incredible that she kept painting.❤️
@vishyswa Жыл бұрын
This is one of the most beautiful films I have seen in the almost seven decades of my life.
@loriscook52313 жыл бұрын
Chris at 40yrs you’re a totally different man than you were at the beginning of this video. Your mother had been a very independent lady and you were both young to be making plans for rest home care for her. It must have been so hard and horrible for you both. The reversal of the care giver role between child and parent is never easy. When age, infirmity, mental illness or physical disease mean a person can no longer safely look after themselves, someone else has to look out for them. We all need to talk about the future, end of life care, organ donation, cremation or burial etc with our families before it gets too late and is a horrible crisis like it was for Chris and his mother. I hope Chris’s plans for the HD care centre work out.
@margueritecawood8843 Жыл бұрын
You wonderful brave beautiful man. Thank you for sharing your story and raising awareness of this terrible disease. We don't have this in our family but my darling 29 year old has schizophrenia and my heart is breaking like yours did. Your story has given me courage. Thank you so very much.
@rebeccawright2038 Жыл бұрын
Chris, there are no words to express my admiration for you and empathy for your most difficult situation. Your mother is truly a gifted artist! Thank you for sharing this very hard part of your and her life with us.
@humanityfighting4apulse378 Жыл бұрын
This disease is brutal!!!! Thanks to the people who shared their lives, and the people who made this documentary possible. I have a friend that is watching her son slowly disappear, and it is a helpless feeling. He was diagnosed w/ Juvenile Huntington’s Disease around the age of 14 yrs old, plus she has an older son that refused to get tested, and he could possibly be a carrier, or develop Huntington’s also! My heart breaks for her, bc she has already seen the process from the first symptoms to the end. She watched her high school sweetheart, whom she married, slowly die from this monster disease, so it’s like having lightning striking twice, and the looming possibility of a third time! My friend’s name is Laura, so please pray for her and her son’s. Thank you in advance, bc it is destroying her. Hugs and love to everyone💞🤗🙏
@fredishaffer16362 жыл бұрын
I feel so much sorrow for the loss of your mother. Her courage was to try it alone. She was a beautiful person in her earlier years. Her physical deterioration was heart breaking. The best of life is ahead of you, just knowing what your future holds is of comfort. Knowing makes you stronger. You are your legacy.
@HWLange6 жыл бұрын
A remarkable film - a remarkable story - and a remarkable family. A must to see for all related to HD! Herwig Lange, MD
@huntingsdance6 жыл бұрын
Thank you Herwig Lange MD!!
@ladylaois81842 жыл бұрын
Brilliant! A really enlightening documentary well done and very raw. I was a RMN for 45 years. We had people with Huntington in and I was very effected by one particular lady . Never forgotten her
@ariadams2955 Жыл бұрын
Dear Chris... it's amazing what you made here and everything you do for the HD community ..... From one filmmaker to another.... Bravo, sir!
@measl6 жыл бұрын
I really don't have any good words for this. I am an "expert" with language - a "wordsmith" - yet putting my reaction to this in words seems much more difficult than I would have thought. I've been following Furby since the middle aughts, and eagerly waiting to see this project come to fruition. The film is outrageously good - I hate the implications of calling it a "legacy", but that's exactly what it is...a fine legacy that will help many others for decades to come (I say "decades because we are getting closer and closer to being able to stop this disease through genetic therapies, and I sincerely doubt that HD will be more than a nuisance diagnosis in 50 years - hopefully a lot sooner). What makes this so amazing is how well it deals with everything that HD has done to the creator of the work - this isn't a look inside by a third party, it's a first hand account taken on a moment to moment intimate basis. The gentle but direct nature of this film is incredibly moving Chris - I can't imagine what it took to create it. I hope everything goes the way you _want_ it to, and when the end does come, I hope you can look back at this and realize what a great thing you are leaving for others.
@mercster3 жыл бұрын
It's bullshit. It's a poor-me story. He left his mom in that state for 2 weeks? Then the extended almost-suicide scene? Apparently you don't know a sadsack when you see one, buddy.
@lydiamoore1422 жыл бұрын
You should be ashamed of yourself. He is a great young man.
@avisgreen322 жыл бұрын
@@mercster I felt the same sometimes he was really mean to her and he knew was sick
@bethewalt7385 Жыл бұрын
A wordsmith? Interesting, I most certainly relate, as a journalist for awhile, a lyricist and poet I've had a life long love affair with words, alliteration and the melodies of words combined, what was your educational pursuit or background that moulded you into a wordsmith? People are interesting, life's stories are fascinating ❤ I believe it may be spelled Furbee not Furby but I could be mistaken
@bethewalt7385 Жыл бұрын
@@mercsterwow! You're coming off like a complete jerk, douche canoe but maybe you just are? Perhaps not
@diane9247 Жыл бұрын
This was one of the most moving films I've ever seen. Thank you so much, Chris. I hope you're doing well and keeping on. For Rosemary: 💐🌸💐
@dink182j4 Жыл бұрын
You are such an amazing person. You father was very wise when he told you that you have touched so many lives and you will continue to touch many more lives. By continuing to fight and live a healthy lifestyle you encourage others to do likewise. If you had chosen the other path how many others would have done the same? Thank you for all the hard work you put into this video and thank you for sharing. Bless you!
@beeintelligent32593 жыл бұрын
Thank you sooooo much! I never knew about HD. What a beautiful mother you have! And you, my dear one, are a blessing to all.
@lindagardener8552 жыл бұрын
Chris, if you see this, I pray that you will live a full, long life and this illness will not manifest in a major way. You are such a special guy, and I will keep you in my thoughts and prayers. God bless you 🙏❤️
@evelynmacha9943 Жыл бұрын
May God bless you Cris. You are amazing son to your mom. You did your best. I am a mom of one son, and, I will be proud mom if my son will take care of me like what you did to your mom.