Huntington's Disease

LadyNeshoba
LadyNeshoba Posts: 159 Member
edited October 12 in Motivation and Support
Is there anyone out there who has a friend/sibling/parent with Huntington's?

It would be nice to have someone to talk to every now and then who understands what me and my family are going through.

Replies

  • LadyNeshoba
    LadyNeshoba Posts: 159 Member
    Anyone?

    Seriously there's no one?
  • shovav91
    shovav91 Posts: 2,335 Member
    Bump... I hope you find someone who can relate. I'm so sorry you have to deal with this.
    I can't relate to this particular disease myself, but I am currently dealing with a very sick relative. Feel free to message me if you ever need to talk.
  • LadyNeshoba
    LadyNeshoba Posts: 159 Member
    I'm thinking about bumping it to any neurological disease.... Parkinson's, Alzheimer's....ect.

    I'm sorry that you have a sick relative. It's never easy no matter what the sickness is :(....Same to you Shovav91
  • tulip07
    tulip07 Posts: 167 Member
    My mom (only 54) was diagnosed with Parkinson's 2 years ago. Although she is in the early stages, the thought of what will happen when the disease progresses and that there is no cure to the disease has been very stressful to me and my family.

    Sorry you and your family have to go through this.
  • LadyNeshoba
    LadyNeshoba Posts: 159 Member
    My mom was diagnosed close to 9 years ago....I'm not sure entirely what to expect or how fast she will start to deteriorate.

    It's difficult to see my mom walk, talk and basically interact. She sounds like she's drunk (slurring) and she can't sit still. She's constantly falling....I think it hit me the hardest the last time I was home.

    My dad was cleaning and had the radio going. Queen's "We Are The Champions" was playing....my mom couldn't even sing the words and we've been singing along to that since I was a baby.

    She's starting to choke now when she eats...I'm wondering how long it will take before she starts forgetting things.
  • Dinah22
    Dinah22 Posts: 69 Member
    Hi LadyNeshoba, I feel for you and the situation you and your family are in. Is there a Huntington's society that you could join for at least some support and information on the likely progression of the illness. If there is then at least you could speak to people who are in a similar situation and discuss coping strategies and develop a friendship. You are very welcome to make me a friend and if I can help in any way then I'll be glad to.

    Just had a quick look on the net (via Google) and found the official website, and there are loads more out there. Best of luck!
    http://www.hda.org.uk/
  • Laceylala
    Laceylala Posts: 3,094 Member
    Hi! I have a girlfriend whose father has it. Its pretty horrible and the effects are so varying. Her dad is mean as can be, which is one of the...effects? if thats the right word of Huntingtons. It runs in her family and I was with her when she got her dna test back to see if she carried the gene...because if you have the gene you get it. Luckily she didn't have the huntington gene.

    I second finding a local Huntington support group, they were her saviour.
  • LadyNeshoba
    LadyNeshoba Posts: 159 Member
    Unfortunately the nearest one for my family is well over 2 hours away. My mom isn't very good with being cramped up in a car and she gets very very cranky easily.

    We had tried when she was in the earlier stages of it...but it freaked her out so much. She didn't want my brothers to go and see what would be in the future for her. Now that they are older and they're starting to understand and realize what's going on it's getting harder for them.

    They are 14 and 12.

    I try and help the best I can with my brothers and helping them handle the new stresses and anger her advancing sickness causes....But I can only do so much with what I've experienced. I know there are others out there who have been through this.

    Thank you so much for finding it for me. I will send it on to my brothers and maybe it will help them out as well.

    Thank you Dinah22 :)
  • LadyNeshoba
    LadyNeshoba Posts: 159 Member
    Hi! I have a girlfriend whose father has it. Its pretty horrible and the effects are so varying. Her dad is mean as can be, which is one of the...effects? if thats the right word of Huntingtons. It runs in her family and I was with her when she got her dna test back to see if she carried the gene...because if you have the gene you get it. Luckily she didn't have the huntington gene.

    I second finding a local Huntington support group, they were her saviour.

    My mom is mean too. Specially towards me. Her anger has always been faced at me for some reason. She also fixates on things...I figured it was probably a side effect.

    I'm adopted so I am not at risk. But my two brothers are. When they get old enough I'll talk to them about getting tested...My mom didn't know til after she had my youngest brother. Her father had it and his mother had it....Her half sister had it as well.

    It's sad and it's horrible. I wouldn't wish it on anyone.
  • beccalucy
    beccalucy Posts: 250 Member
    Hello,

    I'm sorry there's noone with specific Huntington's Disease but I've both cared for someone with a similar neurological disease (Progressive Supranuclear Palsy) and studied it. I remember the challenges well and too had younger siblings at the time.

    Feel free to message me
  • Dinah22
    Dinah22 Posts: 69 Member
    Thank you so much for finding it for me. I will send it on to my brothers and maybe it will help them out as well.

    Thank you Dinah22 :)


    You're very welcome.
  • LadyNeshoba
    LadyNeshoba Posts: 159 Member
    Hello,

    I'm sorry there's noone with specific Huntington's Disease but I've both cared for someone with a similar neurological disease (Progressive Supranuclear Palsy) and studied it. I remember the challenges well and too had younger siblings at the time.

    Feel free to message me

    Maybe I was selfish in only wanting those who have/had relatives/friends with Huntington's. I'm open to any neurological disease....I think that maybe we can all help each other. Any support system is better then none.
  • beccalucy
    beccalucy Posts: 250 Member
    I don't think you were selfish, simply looking for those who could most closely identify with you. However the difficulties your Mum's experiencing are really similar to those my granddad was so I can identify with them.

    I was (and am as a second relative is now battling with PSP) really lucky as the PSP association have support groups, a nurse helpline and online forums so there's a support network there. In fact, realising how unique the support from the charity is has reminding me exactly why I'm training to run London Marathon for them
  • LadyNeshoba
    LadyNeshoba Posts: 159 Member
    I really wish there was one closer for my family. Specially for my brothers because they are at risk to inheriting the disease.
  • skrumshz
    skrumshz Posts: 8 Member
    Hi. My dad had it. I am about to be tested for it. It's scary. I'd actually love someone to talk to about it.
  • nineteentwenty
    nineteentwenty Posts: 469 Member
    My good friend's step father has just begun to succumb. It's tragic and unfair, and devastating to see a man I grew up with slowly fading. I'm terribly sorry.
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