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.
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.
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.
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.
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❤️
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.
@@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 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.
@@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
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.
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.
@@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?
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.
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 💕
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.
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.
@@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.
@@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.
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 💐 ✨️ 💛
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*
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
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.
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.
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.
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 :'(
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!
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.
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.
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 💙
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.
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!
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.
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.
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.
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. 🙏
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.
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.
*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.*
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.
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.
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. 💞💞💞
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.
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.
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.
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.
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.
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.
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.
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.
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
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,
@@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. ❤
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. ❤
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.
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.
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.
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.
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.
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❤❤
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.
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 …
Somebody fire that genetic counselor @55:00. She did about the WORST job ever of "giving the good news first" I've ever witnessed, and only drew out his torturous moment waaaay longer than it had to be. Absolute fail and shame on her.
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
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
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 😢❤
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.
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!💜
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.
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. 💞
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
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 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
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
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 🙏❤️
Lost a very dear friend to it. First, I had ever heard of it. Her mother had it, her grandmother both lived longer than she did. She died at age 33. Thank God her three small children got tested and had no markers for it. It was the hardest thing to watch what Huntington's did to her. It is a horrible disease. She was very beautiful too. My brother wanted to marry her but could not. She had the best personality, and we laughed a lot. I miss her. She was a trooper and brave as could be. Hope one day someone will find a way or fund finding a cure. I now have a friend who family has it. Two have passed recently and one is now in nursing care. My fiend was one of te youngest to know she had it.
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!
I have Huntington's disease got diagnosed last year. Am 39 and in early stages. It's a very scary process and I don't think I'll ever be the same again. Each day at a time and don't waste ur life . 😢
She should not have been alone ever! I watch my friend lose his wife and 2 children to dreadful HD. My heart broke for him & all families that have this in their lives 😭
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.
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.😊
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 ❤❤❤
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?
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.
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.
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. ❤️
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.
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.
"I've always put a limit to my life at 40. There's no 'Old Chris'" I can relate so much to that with Breast Cancer gene and my mom and I. Granted I have options and can be proactive and there are treatments unlike with HD but I understand that feeling of being doomed and that you've seen your future in the slow death so someone you love so much.
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.
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!!!💕💕💕💕💕
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.
Thank you for sharing your story. I hope and pray for a cure. My high school and beyond sweetheart was taken from me with Huntingtons Desease. R.I.P Ken. 💔
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.
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.
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
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.
@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.
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.
My family was fortunate than most HD families. My mother passed away from the disease and one of my brothers also became symptomatic. He decided to have a doctor assisted suicide mid course in the disease. The rest of us kids were spared.
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*
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
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.
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.
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.
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.
Thank you Mike. I searched and could not find an update on Chris. Just found your post. Heartfelt gratitude.
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.
GOD BLESS, Chris is doing the right.
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❤️
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.
@@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.
@@paulinegallagher1675 I'm a bit late but I agree his behaviour was appalling.
@@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.
@@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
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.
ty
Im so sorry for your deep losses. I wish you courage , and the happiness of precious moments.
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.
@@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?
I am so sorry
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.
I'm so sorry to hear what your going through.
Kathleen West 🤗
🌸💗🌸💗🌸💗🌸💗🌸💗🌸💗🌸💗🌸💗🌸💗🌸💗🌸💗🌸
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 💕
How are you doing Kathleen?
I'm so sorry about your diagnosis. ❤
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.
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.
Patricia Loss What is CLL?
@@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.
@@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.
@@katydid1600 Thank you so much.
+9P999p999l999+
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 💐 ✨️ 💛
What a cruel disease. Seeing that lady left on her own, was heartbreaking. Glad she’s at peace. ❤️🕊
Left on her own, exactly. Made me cry and cry for her lonely suffering, years on end.
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*
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
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.
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.
If you don’t mind me asking. Why’d you leave home asap?
I hope and pray that you did call your Mama. Keep calling! She needs your love.
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.
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 :'(
Did you bone?
Very sad beyond words shame
@@anopoabednego6173 What is that question for?
I would of dug into that and found out. You still can!
@@anopoabednego6173what do u mean
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!
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.
I watched my mother’s best friend lose 5 of her 6 boys to this monstrous condition
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.
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 💙
@@stacieortiz8457 if it’s a single gene mutation perhaps the new CRISPR technology could help idk
Yes! I was hoping the same thing!🙏🏼
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.
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!
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.
Good for you! Glad you posted your comment! Together, we'll make it!
Oh Chris, this is brilliant.
You really honoured your mother so dearly.
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.
How on earth could she have gotten worse??!!
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.
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. 🙏
I am so glad your life has been a success helping people understand Huntington’s.
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.
What an incredible documentary.
What a beautiful man. Thank you for sharing your story and raising awareness for Huntington's. ❤🙏
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.
RIP Rosemary
I wish for a cure.
*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.*
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!
I feel the same. Honestly it should be winning awards if it hasn’t already.
@@cooper5626
Absolutely. I still rate this documentary as no 1 now three years after I watched and wrote my post. 😀
As a proffessional who cares for people with huntingtons this film is invaluable. Thankyou
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.
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.
I wked for a Neurologist for many years. There are many neurological diseases that are horrible, and patients continue to get worse n worse.
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
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. 💞💞💞
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.
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.
Huntington’s Chorea
*chorea not korea, maybe you voiced to text and didn't proof read
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.
You're not alone
Haleigh Freeze I hope your doing well.
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.
@@gailwood1451 💓
@@gailwood1451 💓
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.
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.
Oh that’s so sad. I didn’t know babies could be born with that.
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.
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.
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.
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.
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
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,
@@jesussaves1827 Thank you
@@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. ❤
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. ❤
No one is loved in a care home.
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.
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.
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!
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.
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.
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.
Thank you Kimberly I hope she would be proud!
@@huntingsdance you’re amazing thank you for sharing this
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❤❤
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.
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 …
This film should get an award 😊💜🇦🇺
YES.
Truly remarkable and deeply touching story and film. Thank you sincerely for sharing it 🙏💜
Somebody fire that genetic counselor @55:00. She did about the WORST job ever of "giving the good news first" I've ever witnessed, and only drew out his torturous moment waaaay longer than it had to be. Absolute fail and shame on her.
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
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
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 😢❤
This is the disease that Woody Guthrie died from. I heard about this about 50 years ago. This film is incredible.
it is also what his mother died from back when people were put into insane asylums.
What's incredible is that he blames his own mother for getting a disease!
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)
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.
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!💜
Powerful, sad, truth, incredible. Chris, thank you for sharing your story. Continue the fight to find a treatment or cure.
Thanks Dave !
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.
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. 💞
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!
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
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
@@tsmith9649 obviously you didn't watch the whole documentary! Do not be scolding anyone you have not walked a mile in his shoes!
@@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
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
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 🙏❤️
Lost a very dear friend to it. First, I had ever heard of it. Her mother had it, her grandmother both lived longer than she did. She died at age 33. Thank God her three small children got tested and had no markers for it. It was the hardest thing to watch what Huntington's did to her. It is a horrible disease. She was very beautiful too. My brother wanted to marry her but could not. She had the best personality, and we laughed a lot. I miss her. She was a trooper and brave as could be. Hope one day someone will find a way or fund finding a cure. I now have a friend who family has it. Two have passed recently and one is now in nursing care. My fiend was one of te youngest to know she had it.
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!
The cure is to end the genetic blood line. Simple.
I have Huntington's disease got diagnosed last year. Am 39 and in early stages. It's a very scary process and I don't think I'll ever be the same again. Each day at a time and don't waste ur life . 😢
She should not have been alone ever! I watch my friend lose his wife and 2 children to dreadful HD. My heart broke for him & all families that have this in their lives 😭
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.
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.😊
What an amazing story . I'm so proud of you, Chris. I hope you're doing well and thank you for this. ❤️God bless
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 ❤❤❤
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?
Sounds like he made it home just in time to help is mom. That was a huge blessing for her even if she wasn't able to admit that to him.
A remarkable film - a remarkable story - and a remarkable family. A must to see for all related to HD! Herwig Lange, MD
Thank you Herwig Lange MD!!
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.
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.
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. ❤️
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.
Tough to watch, could not stop crying, took me back to 1987 when I left California to go home and care for my mom.
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.
What a terrible disease. And what a wonderful son you have been Chris. And your mum was indeed a very beautiful woman
"I've always put a limit to my life at 40. There's no 'Old Chris'" I can relate so much to that with Breast Cancer gene and my mom and I. Granted I have options and can be proactive and there are treatments unlike with HD but I understand that feeling of being doomed and that you've seen your future in the slow death so someone you love so much.
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.
Beautiful long documentary done by a gentle soul. Wish today Chris is a nice place anywhere he is.
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!!!💕💕💕💕💕
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.
Thank you Chris for sharing her and your story
Having just finished your documentary,
I can’t actually speak right now. Incredible story.
Thank you for sharing your story. I hope and pray for a cure. My high school and beyond sweetheart was taken from me with Huntingtons Desease. R.I.P Ken. 💔
❤❤❤❤❤😣😣😣🙏🙏🙏
❤️
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.
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.
You should be ashamed of yourself. He is a great young man.
@@mercster I felt the same sometimes he was really mean to her and he knew was sick
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
@@mercsterwow! You're coming off like a complete jerk, douche canoe but maybe you just are? Perhaps not
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.
@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.
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.
My family was fortunate than most HD families. My mother passed away from the disease and one of my brothers also became symptomatic. He decided to have a doctor assisted suicide mid course in the disease. The rest of us kids were spared.
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*
It is incredible that she kept painting.❤️
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
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.
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.