Alison's story | Huntington's in mind

As part of our #HuntingtonsInMind campaign we spoke to Alison who has shared her story about caring for her husband, daughter and son who all have Huntington's disease. You can find out more about the campaign here: www.hda.org.uk/huntingtonsinmind
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Please note that every Huntington’s disease experience or journey can be different and not all information shared by the Huntington’s Disease Association will be relevant to all. Please discuss with your GP before undertaking any exercises or medical advice given in our videos.
#HuntingtonsDisease

Пікірлер: 51

  • @debwoods3831
    @debwoods383127 күн бұрын

    I’m currently my husband’s caregiver because of Huntington’s. It’s tough, but I want him to be as safe, happy, and healthy as possible for as long as possible. It’s a horrific disease.

  • @margaretanne7762
    @margaretanne77622 жыл бұрын

    Alison You are a wonderful wife mother and carer.be kind to yourself you are carrying a huge load.much love and prayers.💕

  • @DeadDecline
    @DeadDecline2 жыл бұрын

    It's heartbreaking quite honestly. No one deserves to go through this it's not right.

  • @teresajohnson8988
    @teresajohnson898811 ай бұрын

    You are a blessing to Bert and Elise

  • @wheatstonebridge
    @wheatstonebridge5 ай бұрын

    Im sorry, Alison. I wish I could give you a hug. Praying for you 🙏 ❤️

  • @lorrainetrelinski6932
    @lorrainetrelinski69322 жыл бұрын

    Hi Allison,please i want you to know ,Ive lived your pain,cried those tears.My husband passed in 2019 age 60 from HD.His journey was our journey too.When God chose them for us.He knew he made the right choice.Omg! havent cried like that in a bit, felt so good.Thank you for sharing your family with us.HUGS .

  • @unstrung65
    @unstrung65 Жыл бұрын

    Thank you for telling your story , as heartbreaking as it is - I admire your courage and attitude , I know it can't be easy . Hopefully , with more public awareness of this disease , the road to a cure will come quicker .

  • @JonathanHernandez-mm3nd
    @JonathanHernandez-mm3nd Жыл бұрын

    May god be with all those with Huntington’s Disease.

  • @user-ct3gl1uo7r
    @user-ct3gl1uo7r7 ай бұрын

    Just came across this video, since there are not very many new videos that are less than a year old. My father-in-law had HD and both brother-in-law‘s had HD and now my niece has it and she’s 28 my husband is 61 It does not have any symptoms, so we’re just praying that God has chosen not to be caregivers. After watching my mother-in-law go through taking care of her husband with HD for eight years now we’re doing the same thing. It’s the cruelest coolest disease out there. I wish more people know about Huntington’s disease. God bless you for making this video.❤😢

  • @jaydarby1984
    @jaydarby19842 жыл бұрын

    I've been diagnosed with it.its untreatable

  • @lauriemasters5596

    @lauriemasters5596

    Жыл бұрын

    I'm very sorry.

  • @Alexa-tw3dv

    @Alexa-tw3dv

    Жыл бұрын

    I am so sorry!😢

  • @katydid1600

    @katydid1600

    9 ай бұрын

    @jaydarby1984 I'm so, so sorry. How are you doing?

  • @jaydarby1984

    @jaydarby1984

    9 ай бұрын

    @@katydid1600 you won't believe this I was on a trial in Manchester and the tablet I was on made it alot easier to live and made my hand eye coordination alot better it was live changing ❤❤

  • @katydid1600

    @katydid1600

    9 ай бұрын

    @jaydarby1984 Please know that I'm praying for you and a cure.

  • @lauriemasters5596
    @lauriemasters5596 Жыл бұрын

    I am truly sorry about your husband and daughter. Never feel alone. There are many many people with HD. It's okay for you to cry. Thank you for your story.

  • @elizabethconroy7665
    @elizabethconroy7665 Жыл бұрын

    Lovely Lady,dear Allison What a caring,compassionate person you are Warm Hugs from Amman Jordan 🇯🇴 The Middle East

  • @katydid1600
    @katydid16009 ай бұрын

    Alison, I am crying with you. You are a wonderful person. You have way too much on your plate. I wish I could help you.

  • @davespencer2425
    @davespencer2425 Жыл бұрын

    This is so heartbreaking for you Alison. Your beautiful caring nature shines through . Your husband and daughter are so lovely. You are sharing precious times. Bless you all

  • @benjaminperez1149
    @benjaminperez1149 Жыл бұрын

    Alison, there are no words to say about this challenge in your life and the great loss. God bless you always.

  • @natlip12
    @natlip123 ай бұрын

    Thank you for sharing your story. Very very sad and prayers for you and your family.

  • @PixieTheRabbit
    @PixieTheRabbit Жыл бұрын

    What a lovely, lovely woman! She does know what it is to live with Huntington's disease. She has a double dose of it, and although she doesn't have the physical symptoms, she has to live with and manage the symptoms of two of the people she loves most in the world. It is tragic that people and families hid the disease from their spouses. Huntingtons and other neurological diseases (like ALS) are maddening. There are always research articles proclaiming that we are on the cusp of a cure, or at least a viable treatment. I get very excited. Victims of the disease and their families are ecstatic--until you realize that they have been saying the same thing for decades. These families need our support and encouragement. We need to stop funding ridiculous pet projects like " bus stops complete with Wi-Fi, heated benches and sidewalks, and a steel-frame roof" or the "Popular Romance Project," or "he National Institutes of Health spent more than $300,000 on a University of California, Berkeley, study that proved something no one was questioning-couples are happier when the woman calms down after an argument." Start looking at the other outrageous things, on which our tax dollars are squandered! That money needs to be spent on research and testing for cures, and for pre-IVF testing for people who have these genetic diseases. We owe it to them. We owe it to the yet unborn children who will be afflicted with these diseases. We owe it to the people who love them.

  • @stephaniedegange2737
    @stephaniedegange2737Ай бұрын

    May God bless you all...

  • @altabotha4525
    @altabotha4525 Жыл бұрын

    What a beautiful caring angel she is!

  • @rebekahsprlyan6982
    @rebekahsprlyan6982 Жыл бұрын

    Thank you for sharing your story 🙏🏼

  • @gailpool4042
    @gailpool4042 Жыл бұрын

    All the best, Alison. Thanks for making this video and sharing your story. xxx

  • @fernemcallister6774
    @fernemcallister6774 Жыл бұрын

    What beautiful children you have.

  • @jodiebird1551
    @jodiebird1551 Жыл бұрын

    Thank you for sharing your inspirational story. As the carer of an adult discharged unsafely from CNTW mental health Trust and the fallout when I was the target and got blamed when he was delusional. But I got on with it. I gave up my Senior nurse career, and PhD but got MPhil, got into carer related debt, nonetheless the reward of making a difference in others lives is worth it.

  • @daisysmum7336
    @daisysmum73367 ай бұрын

    My mother died of HD about 12 years ago. One of my brothers also developed the disease and opted for assisted suicide when he was 54. It was a huge shock to the rest of the family as he didn’t tell us about his HD and he refused to have a relationship with us. We only found out when his wife phoned us to tell us he died.

  • @AS-yz2iz

    @AS-yz2iz

    6 ай бұрын

    I'm sorry. That's very hard.

  • @bernadetteoleary8957
    @bernadetteoleary8957 Жыл бұрын

    Stay positive. Treatments are coming.

  • @geztinsdale
    @geztinsdale4 ай бұрын

    Alison, thank you for sharing and what a great partner and mother you are. I adore your strength and wish your husband and daughter all the best as they deal with this horrible affliction x

  • @SusanGuthrie-wr7ok
    @SusanGuthrie-wr7ok4 ай бұрын

    Thank you for making this film. I was diagnosed January 2020. Your bravery helps other care givers. Right now, I am doing well. I home schooled our three daughters. But because those seventeen years were with me not working, I never went back to work. Now I have too few points for SocialSecurity help with disability. I have a wonderful family. Some haven't tested. I never wanted to either until I started with such depression and anxiety, But now I take meds for those symptoms, and because I never went back o work, I don't have the worry of not being able to work correctly cognitively. So far, I am walking well, etc.... I am a fall risk and chocking risk though. I use a medical necklace which we are all thankful for. I still drive, but will stop on my birthday and not renew. I only drive one place now,, close to home. As I said, thankful for all you are doing for the community and raising awareness.

  • @kathyzager9426
    @kathyzager942611 ай бұрын

    She is amazing.

  • @danielechebarria8733
    @danielechebarria87335 ай бұрын

    What an amazing woman. God Bless them all.

  • @MDHenry4
    @MDHenry410 ай бұрын

    Cheers to the ones that make a difference ❤

  • @virginiayoussef
    @virginiayoussef8 ай бұрын

    Isn’t it the case for all of us dear, living as long as we can as well as we can , sometimes we just forget that at any moment we can be Bert and Elise, our brains out of denial refuse to see that, we all have to appreciate life and appreciate living day by day and to enjoy life to its fullest and never to take it for granted.

  • @susankamaka745
    @susankamaka74529 күн бұрын

    🙏🙏🙏❤️. I love your perspective and serene energy.

  • @fernemcallister6774
    @fernemcallister6774 Жыл бұрын

    Alison I wish I could take the pain and stress from you.

  • @optimus2830
    @optimus2830 Жыл бұрын

    Searching for HD groups

  • @katydid1600

    @katydid1600

    11 ай бұрын

    @optimus2830 Google Huntington Disease support groups and then narrow it down to the area you live in.

  • @anitahermalin1849
    @anitahermalin184911 ай бұрын

    This is so sad.

  • @user-ct3gl1uo7r
    @user-ct3gl1uo7r7 ай бұрын

    His has chosen us to be caregivers

  • @optimus2830
    @optimus2830 Жыл бұрын

    Can anyone assist

  • @omega36001
    @omega360017 ай бұрын

    Ask God for wisdom and guidance in His Bible and ask Him about your spiritual authority and how to use it. What would Jesus do. Keep talking with God and study Jesus' life and what it was all about. Jesus never turned anyone away from a healing that got in front of Him or even lowered down through a roof. Never give up and never let the dark side convince you certain things are "from God". Jesus bled out for us. Demons know that and don't want us to know what all that entails and gives to us. AUTHORITY.

  • @imcnagpc2
    @imcnagpc23 ай бұрын

    Does it skip a generation?

  • @williamparker1085
    @williamparker1085 Жыл бұрын

    lovely surroundings

  • @williamparker1085
    @williamparker1085 Жыл бұрын

    delightful lady

  • @williamparker1085
    @williamparker1085 Жыл бұрын

    by god you can read the guilt she feels