Living with Huntington's Disease

Rachel lived a jet set life. KJ was your classic South Island girl. They had nothing in common until they were both diagnosed with Huntington’s disease. Now they share a home and a friendship and their days are measured in the humour and connection they find with family and friends.

[afrinbari]

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.

[cordelia]

"What are you waiting for at the moment?"
"to die. Only to die"
That hit me really strong

[lattymom]

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.

[hollygallapoo]

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.

[alanaadventures]

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!! 😣😣❤❤❤❤

[BBandDG]

What a cruel disease especially the mental degeneration. Must be terrible to see your own child or spouse progress backwards.

[LetsChatGrace]

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

[antiqueqttomes]

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.

[peggyhuntington]

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.

[x_chy_x]

I take too much for granted 😢😥bless them all

[CaptchaNeon]

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.

[jvertrees]

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.

[lovingmayberry]

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.

[madison]

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.

[Sara-wbbs]

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

[DeborahandMichael]

Wow KJ's care taker is incredible. Talk about someone finding their calling! Makes me want to care deeper for others, you know?

[miabrown]

KJ has passed, March 30 2020
.. RIP KJ what a gal !!!

[Zeldafanify]

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

[SassyQ]

Another wonderful video. i must also say that the carer Charlotte is amazing

[Johanna]

These women are surrounded by awesome people: the caregivers, the stepdad, the husband, the mums, each other...