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nestlekenny

Updated 1y ago

Coping with Huntingtons Disease: Tips and Advice

How do you process having Huntingtons disease?

Can you help? Connect today

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DianaHD

2y

The only thing I can say is you have to take it one day at a time or 1 hour at a time. I was diagnosed in 2016 and mine is starting to progress a little more each day.. You need a support system I don't have one and my doctors are trying to find me one I just got more diagnosis yesterday that it was progressing at the point that I am having severe problems walking.. the mental part of it is probably one of the worst things I thought until the fact that it hit my legs now.. My brother passed away almost 2 years ago with HD and he was my rock he was so brave dealing with it then was so much easier because we laughed about it how many times we fell a day.. We made jokes about it just to get through each day . Now my brother's gone I have no one either.. I would say the best thing is to get a support system. Communities like this which I've never been in and this is my first day however if you need to talk I would be happy to be there for you.. when I first joined the Huntington's disease foundation they called HD the devil's disease.. I kind of see why now it makes you feel like the devil at least it does me I'm mean and grouchy and a real witch to be around some days. I don't know how this community works because new today but I am here if you want to chat or talk.. I'm sorry if I was ranting here not sure what the rules are how much you're supposed to post.💕💕🤗💕

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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