Need someone to talk to

Posted , 5 users are following.

Hello just dianoised with Huntington's Disease August 22-2016.

I am having so many symptoms and I have no family support need to talk to some one who can understand ..

0 likes, 10 replies

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10 Replies

  • Posted

    Diane, I do not suffer from Huntington but having nursed people with Huntington I can only empatjise- in my professional capacity, I would suggest getting in touch with the Huntington disease association- they have a helpline and I believe a forum - if you Google it the details are there- good luck
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  • Posted

    Do you just want to talk?? Or talk about the disease, etc... Okay, how about you tell us a bit about yourself? Anything you like, I'm listening if it helps you smile.

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  • Posted

    Hi Diane. Firstly I am so sorry to hear of your recent diagnosis and troubling symptoms. I was diagnosed 3 years ago and I'm also symptomatic. I know how terrifying and overwhelming this time is for you. I too had no family support and what little friends I had left do not understand the magnitude of this disease and the effects it has on you in every way possible, physically, emotionally and psychiatric issues. I was at a loss when I was first diagnosed I had no one to talk to. I contacted the Huntington's Association who have since provided a team of support. I urge you to do the same. The biggest help to me though was speaking directly & openly to others who are affected. I found several fantastic support groups on Facebook. I have made friends for life & a few are like family to me now. I truly hope you can find something suitable for your needs. I would be happy to talk to you personally. I just don't know how we can exchange any private communication here as this is public. The support groups are usually private (you can check each one) which means you can comment without friends, family or strangers seeing these conversations. Please stay strong Diane, you have done the right thing and reached out. It takes time to get over the initial shock but you will get there. It is possible to live positively and happily post diagnosis. I am proof of that. It also helps to lift spirits by supporting others with this disease. I fundraiser and advocate to spread awareness. Good luck and lots of love and courage sent your way. You're not alone in this journey anymore. Xx 

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    • Posted

      thank you for your reply. I replied and sent my email address my guess is they blocked it. I joined several groups on facebook. 

      I am sorry to hear about you having this disease. however I am happy you have found a good support group. thanks for your advice. 

      I hope I can find you in one of the groups on facebook.

       God Bless you !! Diane C

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  • Posted

    Thank you for reaching out Diane. Pity details removed. I'm glad you have also found some support groups already.

    Hopefully you will find me. I go by the same name "Lisa bornthiswayhd" (although my surname is at the end after the bornthiswayhd part, but I don't think I can post it here as it may be removed) I hope that's enough to go on.

    In the meantime if you ever need any advice or just a chat on here, I will regularly look in on you to see if you have posted anything. Us Huntingtons families are hard to come by and we need to stick together. 😁

    Take care x

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