HUNTINGTONS DANCE - The Film

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.

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 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❤️

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.

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 💐 ✨️ 💛

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.

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 :'(

What a cruel disease. Seeing that lady left on her own, was heartbreaking. Glad she’s at peace. ❤️🕊

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.

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

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.

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.

A friend of mine had this dreadful disease. She had no idea her elders died of it as they were misdiagnosed with Parkinson's. Her diagnosis was such a shock. Made worse by her family who abandoned her. Her daughter was angry with her as she may have passed it on!!!!

Oh Chris, this is brilliant. You really honoured your mother so dearly.

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.

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.

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.

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.

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!

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.