Alison's story | Huntington's in mind
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- เผยแพร่เมื่อ 22 พ.ค. 2022
- 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
Alison You are a wonderful wife mother and carer.be kind to yourself you are carrying a huge load.much love and prayers.💕
It's heartbreaking quite honestly. No one deserves to go through this it's not right.
You are a blessing to Bert and Elise
Im sorry, Alison. I wish I could give you a hug. Praying for you 🙏 ❤️
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.
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 .
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 .
May God bless you all...
Lovely Lady,dear Allison
What a caring,compassionate person you are
Warm Hugs from Amman Jordan 🇯🇴 The Middle East
May god be with all those with Huntington’s Disease.
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.❤😢
🙏🙏🙏❤️. I love your perspective and serene energy.
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.
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.
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.
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
I've been diagnosed with it.its untreatable
I'm very sorry.
I am so sorry!😢
@jaydarby1984 I'm so, so sorry. How are you doing?
@@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 ❤❤
@jaydarby1984 Please know that I'm praying for you and a cure.
I hope you have the support you need I nursed my Dad through Alzheimers and my mum just six months after my Dad passed with terminal cancer. There are 4 of us kids but I was the main one funny really 2 had early retirements but I was working and providing care with careers I was exhausted and in the 6mnth period lost 3 stone I was little anyway so i looked terrible When my mum died I was ashamed If felt peace You should never be soul carer you stop being you Im so sorry this happened to your family My sister now has breast cancer and im waiting to see if I have it too strange coincidence If I do but I won't let loved ones take the strain I will go to hospice if that time comes don't lose sight of yourself your a wife and a mum first. x
Alison, there are no words to say about this challenge in your life and the great loss. God bless you always.
What a beautiful caring angel she is!
Thank you for sharing your story 🙏🏼
Thank you for sharing your story. Very very sad and prayers for you and your family.
What beautiful children you have.
All the best, Alison. Thanks for making this video and sharing your story. xxx
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.
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.
Stay positive. Treatments are coming.
She is amazing.
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.
I'm sorry. That's very hard.
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
What an amazing woman. God Bless them all.
Cheers to the ones that make a difference ❤
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.
Alison I wish I could take the pain and stress from you.
His has chosen us to be caregivers
This is so sad.
Searching for HD groups
@optimus2830 Google Huntington Disease support groups and then narrow it down to the area you live in.
Can anyone assist
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.
Does it skip a generation?
lovely surroundings
delightful lady
by god you can read the guilt she feels