I am a PHD student and my research work focuses on Huntington disease. We are working hard to understand how the poly glutamine protein accumulates in the ER to cause the stress, which would destroy the neurons of the brain. I am truly blessed to devote my time for this great cause.
@@RollTideRoll1998 I am very sorry for your loss. We are trying to find a therapeutic target and in order we need to understand the aging process because in most Huntington's patient something happens along the line when they get older that triggers the disease onset. We want to delay that onset time because gene editing especially for the neurons can be very dangerous using crispr because it comes with its own sides of side effects so this is the best approach
She's already dead (worse than dead) to her mother! "It's not as I want to remember her". Her mother can't handle what she's going through. She isn't getting the support, acceptance, love, respect she needs, to enjoy this difficult last stage of her life, in my humble opinion. The reality that people who are suffering terribly, in such a profoundly unfair way, could lack that very basic kind of support sucks. A horrific aspect of life, for some!!
When someone has a terminal diagnosis that involves a lot of pain, both physically and mentally and asks for death and euthanasia, I think we should listen.
I agree. I'm at risk for HD, and my partner and I decided that if I had it, i would opt for assisted euthanasia when I could no longer have quality of life.
100%. I am a stroke victim. Compared to many, I am extremely lucky. However, it completely changes one's point of view. My chances of further brain injury have tripled. I have seen what could happen, and have put arrangements in motion to not have to live that way.
I care for someone with late stage HD. It's a bit rough at times because he also has skitsophrenia. That combined with loss of function with HD tends to send him into quick violent spells but hes an great man nonetheless, loves to shake hands. And I'm very impressed with how quick he squares up when he's mad even with his chorea being so bad he's got a rock solid fighting stance!
That woman has an amazing husband. Not only did he give up having children for her but he continues to stand by her side. That is a man who knows marriage is work and takes his vows seriously. So many people don't understand marriage is meant to be a commitment to death not until things get hard. People these days just run off and get divorced as soon as the honeymoon stage is over let alone staying and caring for a spouse that is sick. I have refused to get married until I find a man that I feel I can make that commitment to.
I loved my husband and I loved another after and I know neither one of them would’ve stayed by me had this happened to me. On the other hand, I would most certainly have stayed with them. These men are amazing. These ladies break my heart that they should suffer so. I suspect neither is with us at this writing. Just beautiful young women.
My dad died of Huntington disease 12 years ago. My 2 brothers and I are at risk it breaks my heart. I can't stop crying because I know what my dad went through. One of my brothers is positive. None of these beautiful humans deserve this disgusting monster disease to take their life 😣😣 my heart breaks and I send all my love to you, I know how you feel. PLEASE SOMEONE FIND A CURE!! 😣😣❤❤❤❤
Alana and Aaron thank you for sharing and sorry to hear about your father. We hope they continue to research and develop treatments - as it is a very cruel disease. Hope you have a great week and thank you again for sharing.
@@theskyisonfire well I went to get tested two years ago but I charged my mind. My brother has ten years until symptoms start and it breaks my heart. I do have the worse memory loss for a year now so that is a symptom. I am praying I have it as well so my brother doesn't have to go through it alone 😭😭😭😭😭💔💔💔💔💔💔
@@alanabrown9265 I am so sorry. That's terrible. just remember that even if you don't have it, your brother will not go throught it alone because you will be there to help him and to love him. I really hope everything ends up alright. (Sorry if this isn't helpful I just woke up so I'm half asleep and I'm not very good with words)
@@alanabrown9265 I am really sorry to hear this. Stay strong and love your brother as much as you can. If you don't get the disease, don't feel guilty because your brother has it and you don't. Just love him no matter if you have the disease or not. I hope they'll find a cure. Stay strong and love each other. May your father protect you from above.
Ghostcupcake They do to an extent. The memory and behavioral symptoms are very reminiscent of dementia, which as any person who had a parent or grandparent go through will tell you, almost makes them child-like again, at least in terms of the trust they put in those who take care of them. They'll do whatever you ask of them out of sheer belief that you have their best interest at heart. It's pure trust in the caretaker, like a child.
The resident I have refuses to let his children see him like this(still kids). When he was in earlier stages they could see him but he drastically dropped and is embarrassed and don’t want his kids to see the shell of who he was. It is such a cruel disease with a cruel fate but I’m glad to see a facility like this work hard to make them happy as they can
I can't even begin to imagine how awful that must be to watch someone you care for so much have to go thru that. I love my daughter and husband and my mother so very much that I know if I was going thru that it would break my spirit to shreds. I hope and pray for her to find peace in anyway she can I'm so sorry 😔
Kimberlys carer is absolutely brilliant,i love that she uses humour to make light of her situation. Listening to Rachel say she's just "waiting to die" is an awfully sad thing to hear,and seeing her struggle so much is so sad,i hope she's doing as good as she can be now
grace l I’m sure once you cannot control your body and have such a difficult time communicating... I can understand the mindset of her comment. How difficult it must be to watch life go on and for you to decline at such a young age, too. 😔 Humbles me.
Grace L It is sad. While I would hope to never be in a position to even THINK about euthanasia, what I do suppose is that I might think of death as “the next big adventure.” Even as a healthy person whose family history suggests living to 100 is possible, I find myself very curious as to what will be in the next life.
Yes, I agree. I thought Kimberley seemed happier than Rachel. And hearing her carer saying how she is happy, I found this one of the most positive things. My Dad has dementia. I try to focus on his happiness. Even when he has lost so much of himself, I think what really matters is that if he can be happy, I can find the strength to be happy with him also. If he can find the strength to do it, I can too. Like the carer was at Kimberly's level playing the silly games which she enjoys, sometimes I do this with my dad too, making funny faces together, hitting saucepans or the table to make rhythms and music together. I think the great thing about a carer like this is that they can spend time with the person without the sad grief being part of it as well.
I was shocked to see a utube story w/ Huntingtons, My husband has it and last yr our son was diagnosed, it is a day to day, my husband was diagnosed when he was 40 now 70, and thank god it is slow in advancing w/ him. it breaks my heart, I wish there was so much more learned about it. Not very well known. His mind is still like a steel trap, chorea is getting more pronounced, balance is an issue, had to have a hip replacement from a fall a few yrs back, but better now. God bless all the caretakers out there. I alone care for my husband and I think it just makes us closer, I love him dearly.
The fact that it makes you closer is the cutest thing iv ever heard!iv been feeling really sad the last few days as one of my good friends has HD iv only just found out and hadn't heard of it before. This comment really has made me feel happy again 😊 thank you x
This is a devastating disease My great great Grandfather discovered it. It does look like it is a combination of 3 diseases with still no cure. It is good to know that there are organizations with good people who care.
He was when I was young my Father who was also a doctor explained the desease to me my first thought was was it ran in our family thought we were going to die from it my dad had to explain it again. I at one time had a roommate who had it he was young at the time didn't show a lot of symptoms then but years later he had died from it. It used to be the 6th on the list but got moved to the teens when Alzheimer's whom what my dad died from took its spot. Now this deseaae is a combination of 3 knowing this I would like to see all 3 organizations Alzheimer's, Parkinson's and Huntington's to work together to come up with a cure I feel if they can cure any one them it would help the other two. Thank you for getting in touch with me.
About 17 years ago, a good friend of mine found out her 22 year old daughter-in-law was just diagnosed with HD. The daughter-in-law and my friend's son had a 2 year old son at the time. The daughter-in-law left soon after the diagnosis. Never heard from her again, but my friend, her son, the whole family in fact, hate this poor woman. I don't understand their anger. This poor girl was given horrible news, probably wanted her son and husband to remember her the way she was, not to mention the hopelessness and depression she must have felt. I think of her so often and wonder how she is. It's just heartbreaking.
I agree with everything you said! I can’t imagine being told this would be my future and how I would react to it. Having such a young child as well, I know how they are upset she ran from her family and child but lord I wouldn’t want my child to see me this way and regressing.
I don’t think she left out of vanity, not wanting ppl 2c her physical deterioration. More likely, she didn’t want 2 become a burden on her family, especially her husband’s attention from their child to care for her. Leaving was a gesture of sacrifice rather than cowardice.
This is so sad. The poor girl wanted to live life to the fullest as best as she could (and she did). But this disease is so bad that she's just literally waiting to finally die. May God have mercy on them and hopefully someday they'll be saved
Oh my Gosh... this is so heartbreaking!! My Brother has Huntington's and he is a great guy, but I can start to see the decline:(( He's a bit hard to deal with at times and I feel like such an ass because I got so mad at him one day for being a handful, and he said... "You know... I'm just trying to do all that I can and have a little fun before the Huntingtons sets in" . Right there, That killed me! I felt so terrible I will never forget it for as long as I live. Here I am moody and he's trying to be happy before he dies.:(( What a truly evil disease. In tears as I'm writing this
Sara, don't be too hard on yourself. Caregiving is such a very hard job. I think the more you love the person the harder it is. Just do what you can , but most importantly get away when you can. Best thing is pray...and that is what I'll be doing for you and your brother.
Huntingtons is so awful because like the person starts out generally healthy and "normal" usually yet they know exactly what's going to happened to them over the years. And you're literally watching someone you love pretty much disappear and lose total control of themselves over time watching the slowly get worse and worse gradually. It's horrible
I was so touched by the love I witnessed in this video--from the moms, to the husband, caregivers. Thank you for giving us a view into the lives of Rachel and KJ, two beautiful women who find a way to remain positive despite their situation. They appear gracious and thankful for the help given to them by others. I hate that this is happening to them and we will never understand why--but a special thanks to all of you for educating and inspiring us all. God bless.
@@courtney.22 of course we can do something about it - become researchers ourselves, or donate money to research institutions that are trying to find more effective treatments for the disease.
Oh hearing her saying she’s waiting to die and “euthanasia” broke my heart into a million pieces. What a cruel disease. Her mother is a strong woman but so is she of course.
Watching this Doc definitely puts your life into perspective. I was diagnosed with schizophrenia, ADHD, dyslexia, dyscalculia, possibly SCT, but after watching this documentary I'm Grateful that my diseases aren't that debilitating, just remember it could be much much worse. Thank you for this documentary! it really opened my eyes to this fact. Everybody should live life like KJ; before her horrible disease overtook her. Seize the day however you can, this can be in small or big ways as long as you're content with what you're doing.
My mom has HD and is in the final stages of it. I haven't gotten tested yet but am at risk. All children born into a family have 50%. I've met so many amazing people from all over the world who research this disease and also have several close friends who have the mutation. There are so many amazing things happening surrounding treatment and a possible cure for this horrid illness right now. Gives me hope that I'll be the last generation that goes through something like this. #Hope4ACure
As someone who may have the privilege of working in an HD lab in the future I seriously think it's coming. There are getting really good at Gene silencing. Hang in there and stay strong.
Thanks for sharing this video. My mother died with this disease 51 years old back in 1985. My brother is now affected by HS - he is 53 years old. I got the test in 2015 and did not have the huntington gene. I do all I can to support my brother. Let's hope there will soon be a breakthrough in the research work
This struck a heart string with me, on my grandma's side she has 3 sisters; all diagnosed with Huntingtons disease. It runs in my family and its not a very well known condition, and not too long ago a family member had passed from it. It is a scary disease, really. My mother has yet to do testing for Huntingtons, but 2 of her cousins have tested positive for it so far. Its a shame they have no cure, really. And I hope that someday there will be a cure, or at least something will make the symptoms better.
I had never heard of Huntington's Disease until i watched an episode of Snapped. A mother who could not stand to see her sons suffer, put them both out of their misery. A jury gave her a short prison sentence and she was, later, pardoned and released. I am sorry about the pain and suffering of those with Huntington's.
They aren't "sucked out of there body".... they are locked inside. This is a cruel process, GOD bless there parents, family and their loving husbands! The care givers are Angel's no doubt! Prayers to you all!
I heard of it being bad, but it made me cry. I'm cronically ill battling pain, periodic paralysis, fatigue,etc dailly and it seems nothing in comparisson. And I also feel it and understand the need for euthanasia. I just wish I was half as strong as KJ... These videos/shows are amazing, heartbreaking but amazing way to spread awareness...
KJ’s career, Charlotte is an absolute angel. Her mother, her husband. The people around her are just gifts to humanity. I wonder if their relative support systems make a difference in their outlooks. Rachel’s husband flaked, and her mother is clearly unable to deal. Then again, she seems to be there more mentally than KJ and perhaps that makes her more aware of her situation.
I'v had 3 autoimmune diseases for many years that have has left me bedbound. After watching this story of these women and the people that love and care for them an old saying came to my mind , . ." I complained that I had no shoes , until I saw a man with no feet" . . 😔🌹🌹
I'm a pretty callous person who is hard to get to cry but your documentaries really get to me and leave a resounding effect for days. You all put such respect and care into not taking advantage of the people in your documentaries where as most other production companies treat their people like nothing more than subjects to bring in ratings and money. Thank you for allowing us to met these amazing people even if it is only through us watching them.
I have aggressive multiple sclerosis and sometimes I feel sorry for myself. Then I see a program like this and I’m grateful to have been diagnosed with MS.
4 years ago I was diagnosed of HUNTINGTON DISEASE and I have tried all I can to get cured but all to no avail, until i saw a post in a health forum about a herbalist man who prepare herbal medication to cure all kind of diseases including HUNTINGTON DISEASE , at first i doubted if it was real but decided to give it a try, when i contact this herbalist via his email and he prepared an HUNTINGTON DISEASE herbal cure and sent it to me via UPS delivery company service,when i received this herbal cure, he gave me step by directions on how to apply it, when i applied it as instructed, i was totally cured of this deadly disease within 1 months of usage, I am now free from HUNTINGTON DISEASE ,all thanks to Dr Joshua Ighalo. you can also reach this great herbal doctor for help . He can help get rid of yours permanently.. Also specialize in treating all kinds of illness, HERPES VIRUS, HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE. ....
I think it’s awesome that their mothers are friends and have each other to talk to and can understand each other. To have someone who understands what your going through completely is very needed. They can laugh and cry together and keep each other going.
literally cried the entire video... everyone's so strong and beautiful and i wish they didn't have to experience this. my heart goes out to the familys and the women themselves!!
I'm totally in awe of both the residents and their incredible caregivers. As a former nurse, I know how hard their job is. God bless each and every one...
RIP Kimberley Dark, aka KJ who died in 2020 during lockdown. She didnt get to donate her brain yet her family who lived in the bubble were able to see her body one last time
Such beautiful people! The Patients, the Families, and the Carers are amazing. Justin is the kind of husband every woman dreams of... one who understands the concept of for better or worse and stays for the worse.
My dad just died in March from this horrific disease. I seen the sorrow in his eyes, body is ready to give up but his eyes told different. This was horrible to see a big beautiful man healthy and active just for the disease to break all of that down. So heartbreaking. I pray they find a cure for it.
I have work with a woman for 27 years who had a high fever at 6 weeks and has developmental and psychological disabilities AND Huntington’s. She is now 58 and has an uncontrollable temper, intermittent explosive disorder, confined to a wheelchair... I love her so much and pray for a quiet end for her.
I didnt realise this disease was this bad, I had heard of it but thought it was just the shaking like Parkinsons. Thank you for these uploads they are very informative.
About a little over a year ago, I decided that it was finally happening; I was getting tested for Huntingtons Disease. It’s been in my family for quite a few generations, my mother carried it and died at the age of 54, my uncle died at the age of 50, and my granddad also in that same age range. My grandmother had no clue that this disease was in the family, even my granddad didn’t know what it was. All he knew was that his sister and his mother were both carrying it. I grew up living with my mother and watched her slowly and painfully deteriorate, struggling with denial and alcohol abuse, to numb her. It destroyed my childhood and my teenage years, even though I was put into foster care it haunted me. In 2014 my brother was tested positive. I had never felt so empty and heartbroken in my entire life, it was painful to know that he too one day would become too fragile to take care of himself. I was terrified and yet strong, doing my best to be there for my mother until she finally had peace in February 2016. She had battled this disease till her last breath. The last 2 years of her life, was spent in bed. No one was able to understand her words, she couldn’t write no longer nor eat solid foods. All she could was listen to the tv and wait as I and care takers came to visit. It not only ruined and destroyed the members of my family that has passed away, but it also split up the rest of my family. Huntington’s became a taboo in my family, as I know it also did in others. The first time I watched this video was a little over a year ago in late 2022. I was exposing myself to it, having done everything in my power to forget about it since my mother passed. I cried, I felt such pain and anger, as well as sorrow. In the beginning of 2023, I finally got tested along with the result I had had to wait for over a month. Here in Denmark they have a law saying that despite how many years you’ve thought of it, they have to make you wait a month, to make sure you really want to know. My results came back negative. I don’t carry the gene nor do I have a chance of getting it. My dad was incredibly happy, and of course I was as well. I’m the only person in my family that talks about this disease and tries to educate those that don’t understand. I have plans to one day start a business that also will also give funds to more research on Huntington’s, and hopefully even more funds to centre’s like these, to truly focus on those that suffer with Huntingtons disease. My mother did NOT have a good care, and she deserved far more than she got. Maybe one day I’ll start a GoFundme, where anyone willing can donate to my future that will also help the research and development of centres all over the world. If you read this entire thing, thank you. We need to help people and each other. Do it for Susanne (my mother), do it for Patrick (my brother), do it for Rachel and do it for KJ. 🤍
In 2014 my aunt was diagnosed with Huntington's disease but she was the first person in our family so it was a massive shock, and then when I turned 39 I was diagnosed with Huntington's disease 💔 September 2016 I found out ,am still trying to get my head around it tbh , im sending you all the love and prayers from one h.d too another x
This is a great documentary even though it is very sad it is very informative. I don't know how those mothers could deal with watching their children die . I will keep them in my prayers for always.
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Wow this is what the power of love can do . Cause she seems to be very happy in the spite of her illness . She is a great encouragement to us all. Thanks for sharing u are a great family .
Attitude yes she I God love her. U are much welcome. And u are doing a good job . U don't even no the blessings u bring to me & my twin boys with Spina Bifida. Thank u very, very much.
Courtney Courteau She’s actively dying and *wants* to die, Courtney. What are they supposed to do? Take away one of the few pleasures in her life out of the fear it might kill her when she already wants to die?
God bless both of ur family's I am watching n learning and am volunteering tomorrow and registering at my church ...i was just in hospital an almost lost my life ...n i have depression thank u so much for everything
My grandmother was recently diagnosed with this disease. We are all currently waiting for an appointment to get tested. This is such a heartbreaking and horrible disease. The deterioration is just unbearable. Thank God to anyone who is willing to be helpful to a patient with Huntington’s. It’s not for the weak
Seeing photos of her before the disease got hold of her, all healthy, happy and taking trips all over the world. Then seeing her state now.. heart breaking. So so sad. She looks like a different person
I spent years looking after my ex farther in law who had Huntington's and please I understand what these people are going threw,but please understand that you all have my total understanding and pure pure LOVE and RESPECT goes out too you ALL XXXXXXXX........
I was taking care of a person that had this bad Huntington and became friend with the family. She passed away but stayed friends with her husband. We Lived with him from 2 years. But it so bad her own two kids didn't come to see her. They were there when she passed. I was with her every day. We did all kind of stuff. I even took her to a Carnival and she got to go on some rides. That made her day. She was in a good mood for weeks.
this video definitely made me shed a tear, my dad is in his late stages of huntingtons and me and my two older sisters have all tested positive for huntingtons. its a cruel and nasty disease and I'm absolutely terrified of growing old. this is a very good doco on showing how people have to deal with family members with the disease. Half of you wants them to stay alive but the other half of you knows theyre not really there anymore and their quality of life isn't very good.
My father also smoked. Dropped his smokes as well. A long tube just wide enough to hold a smoke at one end and held to his fingers with a rubber band at the other end. About 6 feet of clear tubing was used. The tube was secured to the back of his wheelchair and was long enough to handle all the twitching. Someone would light it, then stick it in just enough to stay put. Very sad how Huntington's disease takes a strong person down
I think it’s so awesome how she married a man who traveled for work and she got to see so much of the world. Also with Kimberly her husband is a really great man and he’s still there and coming to visit her in care and standing by her side. So many people run when things get hard and it’s so sad. We have a family friend who’s husband left her when she found out she had a disease that would make her go blind, he didn’t want to be with a blind woman which is pathetic and I’m glad she’s not with him bc she has an amazing husband now but it’s just pathetic for people to run when their partner needs them the most.
I can not watch this without crying - this disease is so cruel! When your body gives up while your mind is still clear, knowing what will happen, waiting to die..... I feel so sorry.... It is a little solace seeing the carers acting with respect and kindness!
From Spain, my congratulations to Attitude for the fantastic work of divulgation of the real impact of this disease and for to show us the life of Rachel and KJ as a simbol of this terrible fight. For the familys, all my respects and admiration for the way to confront this wall on his lifes. I hope all the best for all them. Thanks.
Someone get her a vintage Hollywood cigarette holder. She would be less likely to burn herself and may even have an easier time if someone came up with a simple piece of assistive technology to keep it art arched to her hand. Just a thought.
you know what who cares. She's on her deathbed dude if she wants to smoke let her smoke if it gives her some form of normalcy let her cuz it seems to calm her nerves
Michelle Stalker you're concerned about her burning her self once you get out there and find a f****** cure. Unreal lady. Vintage cigarette holder get off your high horse!
My mom had the Huntington's disease and died when I was 12 years old. I'm 18 now and have a 50% chance to have it too. Watching this made me cry because it reminded me of my mother and how I might die from it too
Hi new subscriber I know this video is old but we watched in class today the tears ran down my face two beautiful women with this horrible condition taking their life away I cried when I got home because they can't control their movement it's constantly I hope they are resting in peace know and the girl who sad nan is waiting for me life is not fair this desease is not fair what a beautiful bubby lady and two beautiful mums❤❤❤❤
What a truly remarkable film. This is such an unbelievably cruel disease but these two once beautiful women are handling it as best they can, not to mention their mothers and that exceptional husband. A thought provoking and sobering item. Marvellous..
i pray for your struggle ..i understand this disease ..i have it in my family too ..my granddad my uncle and my aunt ..who is losing her battle with it at this moment ..and her daughter my little cousin has been diagnosed with it to ..it is a cruel disease and yes it destroys life's..i will share this video with friends who do not understand Huntingtons ..and hopefully we can make people understand it a little better ...thank you for sharing ..and godbless ..x
After watching initially the psychosis video, other videos were in my "proposal list"; so I watched this one also. I also found it very touching. This sickness is really incredibly awful, it was hard to watch it. I think I really would considerate medically assisted exit if I had this...
I had no idea how devastating this diseases is. What a terrible thing, knowing you have this disease and what the future will hold for you. I pray a cure is found to keep people from suffering like this. Very sad, indeed.
if there is a patient at your home like this ,so much pain in your heart . my aunt was so much ill and my grandma never leave the house for a couple of decades....so saddddd......
Attitude all your videos keep giving us hope and life and hapiness and dignity and humanity no matter what. Powerful videos thanks you for existing and sharing
This is one of the hardest diseases to see. I worked with the top neurologist in the US that treats this. Lost a few patients along the way. It's very sad.
![[MV] A leap of faith...ความเชื่อใจครั้งสุดท้าย (From "Petrichor the series")](http://i.ytimg.com/vi/U1piZH2CNXA/mqdefault.jpg)
I am a PHD student and my research work focuses on Huntington disease. We are working hard to understand how the poly glutamine protein accumulates in the ER to cause the stress, which would destroy the neurons of the brain. I am truly blessed to devote my time for this great cause.
Afrin Bari, thank you for your research.
Please go forward and help! Appreciate your help more than you know
Hi afrin bari...
Is there any improvement in your research? Whats its updates?
@@RollTideRoll1998 I am very sorry for your loss. We are trying to find a therapeutic target and in order we need to understand the aging process because in most Huntington's patient something happens along the line when they get older that triggers the disease onset. We want to delay that onset time because gene editing especially for the neurons can be very dangerous using crispr because it comes with its own sides of side effects so this is the best approach
More power to you! I am medical student. Just came across this topic in molecular genetics. I hope we make a breakthrough soon
"What are you waiting for at the moment?"
"to die. Only to die"
That hit me really strong
Thank you for watching, sure was a powerful documentary to be a part of.
Cordelia Del Rey that made me cry :(
I just got to that part, hit me so terribly
It's so sad. My mum's cousin's wife has this horrible disease as well. It is definitely one of the cruelest of illnesses.
She's already dead (worse than dead) to her mother! "It's not as I want to remember her". Her mother can't handle what she's going through. She isn't getting the support, acceptance, love, respect she needs, to enjoy this difficult last stage of her life, in my humble opinion.
The reality that people who are suffering terribly, in such a profoundly unfair way, could lack that very basic kind of support sucks.
A horrific aspect of life, for some!!
When someone has a terminal diagnosis that involves a lot of pain, both physically and mentally and asks for death and euthanasia, I think we should listen.
I agree. I'm at risk for HD, and my partner and I decided that if I had it, i would opt for assisted euthanasia when I could no longer have quality of life.
100%. I am a stroke victim. Compared to many, I am extremely lucky. However, it completely changes one's point of view. My chances of further brain injury have tripled. I have seen what could happen, and have put arrangements in motion to not have to live that way.
Totally agree!
@@ccgreene1 just drink one glass of red wine per day and you wont ever have a stroke
I agree. If they can make such a brave decision, we should honor it.
KJ's carer is fantastic.
Agreed Pootin, thanks for watching.
I care for someone with late stage HD. It's a bit rough at times because he also has skitsophrenia. That combined with loss of function with HD tends to send him into quick violent spells but hes an great man nonetheless, loves to shake hands. And I'm very impressed with how quick he squares up when he's mad even with his chorea being so bad he's got a rock solid fighting stance!
God bless these caregivers. 🙏🏼
I came here to say the same thing. She is AWESOME!
That woman has an amazing husband. Not only did he give up having children for her but he continues to stand by her side. That is a man who knows marriage is work and takes his vows seriously. So many people don't understand marriage is meant to be a commitment to death not until things get hard. People these days just run off and get divorced as soon as the honeymoon stage is over let alone staying and caring for a spouse that is sick. I have refused to get married until I find a man that I feel I can make that commitment to.
Excellent comment, I hope you find that one, if not already. 💖
God bless her husband. 🥺 What a true man!
I loved my husband and I loved another after and I know neither one of them would’ve stayed by me had this happened to me. On the other hand, I would most certainly have stayed with them. These men are amazing. These ladies break my heart that they should suffer so. I suspect neither is with us at this writing. Just beautiful young women.
My dad died of Huntington disease 12 years ago. My 2 brothers and I are at risk it breaks my heart. I can't stop crying because I know what my dad went through. One of my brothers is positive. None of these beautiful humans deserve this disgusting monster disease to take their life 😣😣 my heart breaks and I send all my love to you, I know how you feel. PLEASE SOMEONE FIND A CURE!! 😣😣❤❤❤❤
Alana and Aaron thank you for sharing and sorry to hear about your father. We hope they continue to research and develop treatments - as it is a very cruel disease. Hope you have a great week and thank you again for sharing.
I'm really sorry all of that has happened. How are you all right now?
@@theskyisonfire well I went to get tested two years ago but I charged my mind. My brother has ten years until symptoms start and it breaks my heart. I do have the worse memory loss for a year now so that is a symptom. I am praying I have it as well so my brother doesn't have to go through it alone 😭😭😭😭😭💔💔💔💔💔💔
@@alanabrown9265 I am so sorry. That's terrible. just remember that even if you don't have it, your brother will not go throught it alone because you will be there to help him and to love him. I really hope everything ends up alright. (Sorry if this isn't helpful I just woke up so I'm half asleep and I'm not very good with words)
@@alanabrown9265 I am really sorry to hear this. Stay strong and love your brother as much as you can. If you don't get the disease, don't feel guilty because your brother has it and you don't. Just love him no matter if you have the disease or not. I hope they'll find a cure. Stay strong and love each other. May your father protect you from above.
What a cruel disease especially the mental degeneration. Must be terrible to see your own child or spouse progress backwards.
Ghostcupcake They do to an extent. The memory and behavioral symptoms are very reminiscent of dementia, which as any person who had a parent or grandparent go through will tell you, almost makes them child-like again, at least in terms of the trust they put in those who take care of them. They'll do whatever you ask of them out of sheer belief that you have their best interest at heart. It's pure trust in the caretaker, like a child.
The resident I have refuses to let his children see him like this(still kids). When he was in earlier stages they could see him but he drastically dropped and is embarrassed and don’t want his kids to see the shell of who he was. It is such a cruel disease with a cruel fate but I’m glad to see a facility like this work hard to make them happy as they can
@@mirandapriest4934 that's really sad cuz the kids love their dad no matter what shape he is in
that is terrible disease :(
I can't even begin to imagine how awful that must be to watch someone you care for so much have to go thru that. I love my daughter and husband and my mother so very much that I know if I was going thru that it would break my spirit to shreds. I hope and pray for her to find peace in anyway she can I'm so sorry 😔
Kimberlys carer is absolutely brilliant,i love that she uses humour to make light of her situation. Listening to Rachel say she's just "waiting to die" is an awfully sad thing to hear,and seeing her struggle so much is so sad,i hope she's doing as good as she can be now
grace l I’m sure once you cannot control your body and have such a difficult time communicating... I can understand the mindset of her comment. How difficult it must be to watch life go on and for you to decline at such a young age, too. 😔 Humbles me.
Grace L It is sad. While I would hope to never be in a position to even THINK about euthanasia, what I do suppose is that I might think of death as “the next big adventure.” Even as a healthy person whose family history suggests living to 100 is possible, I find myself very curious as to what will be in the next life.
Yes, I agree. I thought Kimberley seemed happier than Rachel. And hearing her carer saying how she is happy, I found this one of the most positive things. My Dad has dementia. I try to focus on his happiness. Even when he has lost so much of himself, I think what really matters is that if he can be happy, I can find the strength to be happy with him also. If he can find the strength to do it, I can too. Like the carer was at Kimberly's level playing the silly games which she enjoys, sometimes I do this with my dad too, making funny faces together, hitting saucepans or the table to make rhythms and music together. I think the great thing about a carer like this is that they can spend time with the person without the sad grief being part of it as well.
I was shocked to see a utube story w/ Huntingtons, My husband has it and last yr our son was diagnosed, it is a day to day, my husband was diagnosed when he was 40 now 70, and thank god it is slow in advancing w/ him. it breaks my heart, I wish there was so much more learned about it. Not very well known. His mind is still like a steel trap, chorea is getting more pronounced, balance is an issue, had to have a hip replacement from a fall a few yrs back, but better now. God bless all the caretakers out there. I alone care for my husband and I think it just makes us closer, I love him dearly.
The fact that it makes you closer is the cutest thing iv ever heard!iv been feeling really sad the last few days as one of my good friends has HD iv only just found out and hadn't heard of it before. This comment really has made me feel happy again 😊 thank you x
It's incredible how much her husband loves and her is standing by her. She deserves that unconditional love he and her family are providing for her.
Attitude Enjoyed it a lot, thank you!!
This is a devastating disease My great great Grandfather discovered it. It does look like it is a combination of 3 diseases with still no cure. It is good to know that there are organizations with good people who care.
Hi Peggy! It certainly is a cruel disease! Hope you enjoyed the episode!
Peggy Huntington Amazing, George was 21 and just out of Med school
He was when I was young my Father who was also a doctor explained the desease to me my first thought was was it ran in our family thought we were going to die from it my dad had to explain it again. I at one time had a roommate who had it he was young at the time didn't show a lot of symptoms then but years later he had died from it. It used to be the 6th on the list but got moved to the teens when Alzheimer's whom what my dad died from took its spot. Now this deseaae is a combination of 3 knowing
this I would like to see all 3 organizations Alzheimer's, Parkinson's and Huntington's to work together to come up with a cure I feel if they can cure any one them it would help the other two. Thank you for getting in touch with me.
Holy moly, your Grandfather was a brilliant man!
@@peggyhuntington1295 check beta-amyloid plaques. They seem to cause Alzheimer's
kjs loving husband touches my heart. that is true love and devotion in a world where many partners would leave in this situation. bless him.
Jenny V I had my first symptom of MS in 1993. My husband left me in '95,
@@Bra01ndy I'm so sorry he did that to you sweetheart.
About 17 years ago, a good friend of mine found out her 22 year old daughter-in-law was just diagnosed with HD. The daughter-in-law and my friend's son had a 2 year old son at the time. The daughter-in-law left soon after the diagnosis. Never heard from her again, but my friend, her son, the whole family in fact, hate this poor woman. I don't understand their anger. This poor girl was given horrible news, probably wanted her son and husband to remember her the way she was, not to mention the hopelessness and depression she must have felt. I think of her so often and wonder how she is. It's just heartbreaking.
I agree with everything you said! I can’t imagine being told this would be my future and how I would react to it. Having such a young child as well, I know how they are upset she ran from her family and child but lord I wouldn’t want my child to see me this way and regressing.
I don’t think she left out of vanity, not wanting ppl 2c her physical deterioration. More likely, she didn’t want 2 become a burden on her family, especially her husband’s attention from their child to care for her. Leaving was a gesture of sacrifice rather than cowardice.
@@jayesimond9301 i would be pissed about having a kid dumped on me.
@@WatchmyPlaylist. it's his kid
@@jayesimond9301 u
I take too much for granted 😢😥bless them all
This is so sad. The poor girl wanted to live life to the fullest as best as she could (and she did). But this disease is so bad that she's just literally waiting to finally die. May God have mercy on them and hopefully someday they'll be saved
Thank you Toon Link, thanks for watching!
I feel so guilty for complaining about the things I complain about now. This is heart breaking.
It certainly is but never downplay any struggles you may have either...
I have the disease too so does my brother we got it from my mom and I’m very scared to live like this too I just got to take it a day at a time
@@laurarabbia5483GOD BLESS YOU ❤
Oh my Gosh... this is so heartbreaking!! My Brother has Huntington's and he is a great guy, but I can start to see the decline:(( He's a bit hard to deal with at times and I feel like such an ass because I got so mad at him one day for being a handful, and he said... "You know... I'm just trying to do all that I can and have a little fun before the Huntingtons sets in" . Right there, That killed me! I felt so terrible I will never forget it for as long as I live. Here I am moody and he's trying to be happy before he dies.:(( What a truly evil disease. In tears as I'm writing this
Sara, don't be too hard on yourself. Caregiving is such a very hard job. I think the more you love the person the harder it is. Just do what you can , but most importantly get away when you can. Best thing is pray...and that is what I'll be doing for you and your brother.
@@katydid1600 Thank you so much for your thoughts and advice. I truly appreciate that❤️
Sending you so much love!!!!
Don't play down your own struggles Sara. It's just as hard on you as it on him but in different ways.
❤️
Huntingtons is so awful because like the person starts out generally healthy and "normal" usually yet they know exactly what's going to happened to them over the years. And you're literally watching someone you love pretty much disappear and lose total control of themselves over time watching the slowly get worse and worse gradually. It's horrible
Rachel and KJ are pretty amazing for sharing their stories with us!
Wow KJ's care taker is incredible. Talk about someone finding their calling! Makes me want to care deeper for others, you know?
I thought the same thing! I thought I would be so much better of a person if I cared about people that much.
Another wonderful video. i must also say that the carer Charlotte is amazing
Thank you SassyQ87
I was so touched by the love I witnessed in this video--from the moms, to the husband, caregivers. Thank you for giving us a view into the lives of Rachel and KJ, two beautiful women who find a way to remain positive despite their situation. They appear gracious and thankful for the help given to them by others. I hate that this is happening to them and we will never understand why--but a special thanks to all of you for educating and inspiring us all. God bless.
Thanks for your lovely comment and support, Wendy.
I hate how there are diseases like this, with no treatment and no cure, and there's nothing we can do about it.
@@courtney.22 of course we can do something about it - become researchers ourselves, or donate money to research institutions that are trying to find more effective treatments for the disease.
These women are surrounded by awesome people: the caregivers, the stepdad, the husband, the mums, each other...
Oh hearing her saying she’s waiting to die and “euthanasia” broke my heart into a million pieces. What a cruel disease. Her mother is a strong woman but so is she of course.
Watching this Doc definitely puts your life into perspective. I was diagnosed with schizophrenia, ADHD, dyslexia, dyscalculia, possibly SCT, but after watching this documentary I'm Grateful that my diseases aren't that debilitating, just remember it could be much much worse. Thank you for this documentary! it really opened my eyes to this fact. Everybody should live life like KJ; before her horrible disease overtook her. Seize the day however you can, this can be in small or big ways as long as you're content with what you're doing.
My mom has HD and is in the final stages of it. I haven't gotten tested yet but am at risk. All children born into a family have 50%. I've met so many amazing people from all over the world who research this disease and also have several close friends who have the mutation. There are so many amazing things happening surrounding treatment and a possible cure for this horrid illness right now. Gives me hope that I'll be the last generation that goes through something like this. #Hope4ACure
Thanks for sharing Sapphire!
Hope you have not inherited the disease.
That's so scary. Huntington's is a horrible disease. Genetic diseases like HD are one of the reasons I want to become a doctor.
As someone who may have the privilege of working in an HD lab in the future I seriously think it's coming. There are getting really good at Gene silencing. Hang in there and stay strong.
Please get tested before you have children.
KJ has passed, March 30 2020
.. RIP KJ what a gal !!!
🌹
Thanks for sharing this video. My mother died with this disease 51 years old back in 1985. My brother is now affected by HS - he is 53 years old. I got the test in 2015 and did not have the huntington gene. I do all I can to support my brother. Let's hope there will soon be a breakthrough in the research work
Thanks for sharing Helle, we are glad you enjoyed the video, we wish you well and thanks for watching!
This struck a heart string with me, on my grandma's side she has 3 sisters; all diagnosed with Huntingtons disease. It runs in my family and its not a very well known condition, and not too long ago a family member had passed from it. It is a scary disease, really. My mother has yet to do testing for Huntingtons, but 2 of her cousins have tested positive for it so far. Its a shame they have no cure, really. And I hope that someday there will be a cure, or at least something will make the symptoms better.
Thank you for sharing Savannah, we wish you and your family the very best of luck!
I had never heard of Huntington's Disease until i watched an episode of Snapped. A mother who could not stand to see her sons suffer, put them both out of their misery. A jury gave her a short prison sentence and she was, later, pardoned and released. I am sorry about the pain and suffering of those with Huntington's.
As a professional carer myself I cannot thank you enough for those fantastic documentaries, all the best from germany!
Thanks for all your support Torben B.! Keep up the great work!
Torben B. Diese Dokumentationen sind definitiv die besten!
They aren't "sucked out of there body".... they are locked inside. This is a cruel process, GOD bless there parents, family and their loving husbands! The care givers are Angel's no doubt! Prayers to you all!
I heard of it being bad, but it made me cry. I'm cronically ill battling pain, periodic paralysis, fatigue,etc dailly and it seems nothing in comparisson. And I also feel it and understand the need for euthanasia. I just wish I was half as strong as KJ...
These videos/shows are amazing, heartbreaking but amazing way to spread awareness...
Same here. ox
kristina Thomas it is so sad my aunt has HD I have somewhat watched her go down hill she is bed ridden now
My dad has HD and he’s getting pretty bad and I’m so scared because he only has 2 years or less left
KJ’s career, Charlotte is an absolute angel. Her mother, her husband. The people around her are just gifts to humanity.
I wonder if their relative support systems make a difference in their outlooks. Rachel’s husband flaked, and her mother is clearly unable to deal. Then again, she seems to be there more mentally than KJ and perhaps that makes her more aware of her situation.
Eztliz agreed. I felt Rachel’s mother to be cold and can’t deal with it as well as she should. I felt bad for her
I love Charlotte!! She's an amazing caregiver!
Thanks for watching The Batzinator
I'v had 3 autoimmune diseases for many years that have has left me bedbound. After watching this story of these women and the people that love and care for them an old saying came to my mind , . ." I complained that I had no shoes , until I saw a man with no feet" . . 😔🌹🌹
I'm a pretty callous person who is hard to get to cry but your documentaries really get to me and leave a resounding effect for days. You all put such respect and care into not taking advantage of the people in your documentaries where as most other production companies treat their people like nothing more than subjects to bring in ratings and money. Thank you for allowing us to met these amazing people even if it is only through us watching them.
Thank you for your feedback, I have passed it on to the team. I hope you stay tuned!
This is my new fav channel. These documentaries are everything!! 🙌🏾
Thank you so much Kailah! We really appreciate your support and I will pass on this comment on to the team. Thanks again for watching and stay tuned!
Kailah Robinson mine too. I don't watch Hollywood movies at all. Only independent and documentaries.
Absolutely. Sheds light on so many things that we, as general public know little or nothing about
@@atheistmommy3710 great
I have aggressive multiple sclerosis and sometimes I feel sorry for myself. Then I see a program like this and I’m grateful to have been diagnosed with MS.
4 years ago I was diagnosed of HUNTINGTON DISEASE and I have tried all I can to get cured but all to no avail, until i saw a post in a health forum about a herbalist man who prepare herbal medication to cure all kind of diseases including HUNTINGTON DISEASE , at first i doubted if it was real but decided to give it a try, when i contact this herbalist via his email and he prepared an HUNTINGTON DISEASE herbal cure and sent it to me via UPS delivery company service,when i received this herbal cure, he gave me step by directions on how to apply it, when i applied it as instructed, i was totally cured of this deadly disease within 1 months of usage, I am now free from HUNTINGTON DISEASE ,all thanks to Dr Joshua Ighalo. you can also reach this great herbal doctor for help . He can help get rid of yours permanently.. Also specialize in treating all kinds of illness, HERPES VIRUS, HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE. ....
I think it’s awesome that their mothers are friends and have each other to talk to and can understand each other. To have someone who understands what your going through completely is very needed. They can laugh and cry together and keep each other going.
Look at this poor lady. I was nearly in tears watching this.
literally cried the entire video... everyone's so strong and beautiful and i wish they didn't have to experience this. my heart goes out to the familys and the women themselves!!
Thanks for the kind message Rachel!
Justin and KJ is the most beautiful love story ever! I believe he is one of the best men ever!!!
He certainly is! 🌻
I'm totally in awe of both the residents and their incredible caregivers. As a former nurse, I know how hard their job is. God bless each and every one...
That lady with the mullet is awesome.
Thanks for watching Czechking!
I know right! I wonder if she competes in "mullet fest"? I can't remember if its Australia or New Zealand, though??
Awe
"to die" Fucking hell, that's so sad. Much love to her for her honesty.
.
Doomaflachie calm down
so touching, the women are all amazing... I think the love the family n caregivers n spouses have is so genuine n real...
Thanks for your comment Candy! They certainly are amazingly strong people!
RIP Kimberley Dark, aka KJ who died in 2020 during lockdown. She didnt get to donate her brain yet her family who lived in the bubble were able to see her body one last time
I love the carer Charlotte! She's so nice and wonderful with people.
I have a serious crush on her
Thanks for watching I Like Elephants, glad to see you're enjoying our videos!!
Such beautiful people! The Patients, the Families, and the Carers are amazing. Justin is the kind of husband every woman dreams of... one who understands the concept of for better or worse and stays for the worse.
these women are amazing. i wish i had their strength.
Thanks for watching ReneeandJimmyG!
My dad just died in March from this horrific disease. I seen the sorrow in his eyes, body is ready to give up but his eyes told different. This was horrible to see a big beautiful man healthy and active just for the disease to break all of that down. So heartbreaking. I pray they find a cure for it.
I'm sorry for your loss 😔💛
Rachel and KJ, sending both of you so much love! 💙🤗
I have work with a woman for 27 years who had a high fever at 6 weeks and has developmental and psychological disabilities AND Huntington’s. She is now 58 and has an uncontrollable temper, intermittent explosive disorder, confined to a wheelchair... I love her so much and pray for a quiet end for her.
So sad... watched multiple family members suffer and pass from this disease 😥
What an amazing man she found. Very honorable man.
I didnt realise this disease was this bad, I had heard of it but thought it was just the shaking like Parkinsons. Thank you for these uploads they are very informative.
We are glad to have informed you Gina! Hope you enjoyed the episode ! Thanks for watching!
About a little over a year ago, I decided that it was finally happening; I was getting tested for Huntingtons Disease. It’s been in my family for quite a few generations, my mother carried it and died at the age of 54, my uncle died at the age of 50, and my granddad also in that same age range. My grandmother had no clue that this disease was in the family, even my granddad didn’t know what it was. All he knew was that his sister and his mother were both carrying it. I grew up living with my mother and watched her slowly and painfully deteriorate, struggling with denial and alcohol abuse, to numb her. It destroyed my childhood and my teenage years, even though I was put into foster care it haunted me. In 2014 my brother was tested positive. I had never felt so empty and heartbroken in my entire life, it was painful to know that he too one day would become too fragile to take care of himself. I was terrified and yet strong, doing my best to be there for my mother until she finally had peace in February 2016. She had battled this disease till her last breath. The last 2 years of her life, was spent in bed. No one was able to understand her words, she couldn’t write no longer nor eat solid foods. All she could was listen to the tv and wait as I and care takers came to visit. It not only ruined and destroyed the members of my family that has passed away, but it also split up the rest of my family. Huntington’s became a taboo in my family, as I know it also did in others.
The first time I watched this video was a little over a year ago in late 2022. I was exposing myself to it, having done everything in my power to forget about it since my mother passed. I cried, I felt such pain and anger, as well as sorrow. In the beginning of 2023, I finally got tested along with the result I had had to wait for over a month. Here in Denmark they have a law saying that despite how many years you’ve thought of it, they have to make you wait a month, to make sure you really want to know. My results came back negative. I don’t carry the gene nor do I have a chance of getting it. My dad was incredibly happy, and of course I was as well. I’m the only person in my family that talks about this disease and tries to educate those that don’t understand. I have plans to one day start a business that also will also give funds to more research on Huntington’s, and hopefully even more funds to centre’s like these, to truly focus on those that suffer with Huntingtons disease. My mother did NOT have a good care, and she deserved far more than she got. Maybe one day I’ll start a GoFundme, where anyone willing can donate to my future that will also help the research and development of centres all over the world.
If you read this entire thing, thank you. We need to help people and each other. Do it for Susanne (my mother), do it for Patrick (my brother), do it for Rachel and do it for KJ. 🤍
In 2014 my aunt was diagnosed with Huntington's disease but she was the first person in our family so it was a massive shock, and then when I turned 39 I was diagnosed with Huntington's disease 💔 September 2016 I found out ,am still trying to get my head around it tbh , im sending you all the love and prayers from one h.d too another x
This is a great documentary even though it is very sad it is very informative. I don't know how those mothers could deal with watching their children die . I will keep them in my prayers for always.
Thanks for your kind words Vegangirl29 Brown!
I Curеd Му Yееаst InfеееесtiоnТор rаnkеd Caааndidа рррlаn fооr dоwnlоаdUniquе hоlistiсс Sуstеmtwitter.com/cb801d91f51e7654a/status/784262969735516160 In Му Мind Huntingtоn s Disеаsе
Ilker Ibishev you spelt eight words of that correctly and one of those was "I".......
Ollie Embourne it's supposed to be a joke
Impressed at how this showcases how fantastic this healthcare service is and how dedicated the staff are. Go Christchurch ❤
I just learned of KJs passing on March 30th, so sad to know this, RIP Kimberly, you are amazing
OMG, I took care of a man with this. R. I. P KEVIN. we still miss you
Wow this is what the power of love can do . Cause she seems to be very happy in the spite of her illness . She is a great encouragement to us all. Thanks for sharing u are a great family .
She really is an inspiration Kay! Thanks for watching!
Attitude yes she I God love her. U are much welcome. And u are doing a good job . U don't even no the blessings u bring to me & my twin boys with Spina Bifida. Thank u very, very much.
* is*
Why do they let her smoke? Couldn't she fucking choke on that cigarette with all those jerking movements?
Courtney Courteau She’s actively dying and *wants* to die, Courtney. What are they supposed to do? Take away one of the few pleasures in her life out of the fear it might kill her when she already wants to die?
God bless both of ur family's I am watching n learning and am volunteering tomorrow and registering at my church ...i was just in hospital an almost lost my life ...n i have depression thank u so much for everything
they never! disappear, look into tier eyes, that person you love is in there!
I admire them for their courage and fun ways and positive spirits. Bless their carers and family.
Thanks for watching Danielle! Hope you stay tuned!
They have wonderful family members, who really, truly love them.
My grandmother was recently diagnosed with this disease. We are all currently waiting for an appointment to get tested. This is such a heartbreaking and horrible disease. The deterioration is just unbearable. Thank God to anyone who is willing to be helpful to a patient with Huntington’s. It’s not for the weak
God bless these two beautiful women. Give strength and comfort to the families.❤️❤️❤️❤️
RIP KJ, fly high 🕊
such a sad disease yet so beautiful to see those very special moments of happiness
Seeing photos of her before the disease got hold of her, all healthy, happy and taking trips all over the world. Then seeing her state now.. heart breaking. So so sad. She looks like a different person
I spent years looking after my ex farther in law who had Huntington's and please I understand what these people are going threw,but please understand that you all have my total understanding and pure pure LOVE and RESPECT goes out too you ALL XXXXXXXX........
I was taking care of a person that had this bad Huntington and became friend with the family. She passed away but stayed friends with her husband. We Lived with him from 2 years. But it so bad her own two kids didn't come to see her. They were there when she passed. I was with her every day. We did all kind of stuff. I even took her to a Carnival and she got to go on some rides. That made her day. She was in a good mood for weeks.
this video definitely made me shed a tear, my dad is in his late stages of huntingtons and me and my two older sisters have all tested positive for huntingtons. its a cruel and nasty disease and I'm absolutely terrified of growing old. this is a very good doco on showing how people have to deal with family members with the disease. Half of you wants them to stay alive but the other half of you knows theyre not really there anymore and their quality of life isn't very good.
Thank you for sharing Jess, we wish you and your family the very best!
My father also smoked. Dropped his smokes as well. A long tube just wide enough to hold a smoke at one end and held to his fingers with a rubber band at the other end. About 6 feet of clear tubing was used. The tube was secured to the back of his wheelchair and was long enough to handle all the twitching. Someone would light it, then stick it in just enough to stay put. Very sad how Huntington's disease takes a strong person down
I think it’s so awesome how she married a man who traveled for work and she got to see so much of the world. Also with Kimberly her husband is a really great man and he’s still there and coming to visit her in care and standing by her side. So many people run when things get hard and it’s so sad. We have a family friend who’s husband left her when she found out she had a disease that would make her go blind, he didn’t want to be with a blind woman which is pathetic and I’m glad she’s not with him bc she has an amazing husband now but it’s just pathetic for people to run when their partner needs them the most.
I can not watch this without crying - this disease is so cruel! When your body gives up while your mind is still clear, knowing what will happen, waiting to die..... I feel so sorry....
It is a little solace seeing the carers acting with respect and kindness!
I love the carer Ms Basher and the lady’s husband, how beautiful. God Bless You lovely girls
I watched my cousin die from this horrible. We would go out to movies are dance clubs but her symptoms got worse. I miss her so much!
From Spain, my congratulations to Attitude for the fantastic work of divulgation of the real impact of this disease and for to show us the life of Rachel and KJ as a simbol of this terrible fight. For the familys, all my respects and admiration for the way to confront this wall on his lifes. I hope all the best for all them. Thanks.
Thanks for your kind words Rafael! Hope you enjoyed the episode!
Such an amazing young man. You both look so happy together. Many blessings in your marriage and competitions.
Carer Charlotte is a ray of sunshine!
Someone get her a vintage Hollywood cigarette holder. She would be less likely to burn herself and may even have an easier time if someone came up with a simple piece of assistive technology to keep it art arched to her hand. Just a thought.
That's a great idea but maybe she just likes to do something in a normal method while she needs help with others.
RaeRae - As if that matters at this stage of her life.
Michelle Stalkekkk
you know what who cares. She's on her deathbed dude if she wants to smoke let her smoke if it gives her some form of normalcy let her cuz it seems to calm her nerves
Michelle Stalker you're concerned about her burning her self once you get out there and find a f****** cure. Unreal lady. Vintage cigarette holder get off your high horse!
My mom had the Huntington's disease and died when I was 12 years old. I'm 18 now and have a 50% chance to have it too. Watching this made me cry because it reminded me of my mother and how I might die from it too
I wish you all the support and love you can get throughout your life. I’m sorry you have to face such an uncertain future. Take care.
@@chamomilemaree7445 Thank you for your kind message. I actually got tested a few month after this comment and I fortunately did not inherit it.
@@vabe9202 I’m very glad to hear that. Take care.
What an amazing group of people!
Hi new subscriber I know this video is old but we watched in class today the tears ran down my face two beautiful women with this horrible condition taking their life away I cried when I got home because they can't control their movement it's constantly I hope they are resting in peace know and the girl who sad nan is waiting for me life is not fair this desease is not fair what a beautiful bubby lady and two beautiful mums❤❤❤❤
What a truly remarkable film. This is such an unbelievably cruel disease but these two once beautiful women are handling it as best they can, not to mention their mothers and that exceptional husband. A thought provoking and sobering item. Marvellous..
i pray for your struggle ..i understand this disease ..i have it in my family too ..my granddad my uncle and my aunt ..who is losing her battle with it at this moment ..and her daughter my little cousin has been diagnosed with it to ..it is a cruel disease and yes it destroys life's..i will share this video with friends who do not understand Huntingtons ..and hopefully we can make people understand it a little better ...thank you for sharing ..and godbless ..x
Thanks for sharing! Glad you find so much value from our videos Tracy Aldrich !
this really nice to see people getting the help they need especial kj and Rachel
Hope you enjoyed the episode Lindsey, thanks for your support!
After watching initially the psychosis video, other videos were in my "proposal list"; so I watched this one also. I also found it very touching. This sickness is really incredibly awful, it was hard to watch it.
I think I really would considerate medically assisted exit if I had this...
Thanks for your feedback, we really appreciate it!
Death is a blessing for these people who are only suffering.
I love the female carer. She does a great job
Sadlysince adding my last post my brave wonderful aunt has lost her battle. with HD..she is free now
Jesus. Why am I watching this channel??
Breaking my goddamn heart.
I had no idea how devastating this diseases is. What a terrible thing, knowing you have this disease and what the future will hold for you. I pray a cure is found to keep people from suffering like this. Very sad, indeed.
if there is a patient at your home like this ,so much pain in your heart . my aunt was so much ill and my grandma never leave the house for a couple of decades....so saddddd......
Attitude all your videos keep giving us hope and life and hapiness and dignity and humanity no matter what. Powerful videos thanks you for existing and sharing
Hope you enjoyed the episode ! Thanks for watching!😀
This is one of the hardest diseases to see. I worked with the top neurologist in the US that treats this. Lost a few patients along the way. It's very sad.
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this is heartbreaking.
Agreed Jenny, Huntington's is a terrible disease.