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Testing, or at risk Discuss testing for Huntingtonís disease, and living with the risk of HD

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Old 23-04-18, 03:07 PM   #1
lucybee
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Join Date: Apr 2018
Location: Glasgow
Posts: 9
Default New to forum- looking for some advice

Hi there, totally new to this forum just looking for a bit of advice.

My mum was diagnosed with HD just over a year ago. We had known something was not right for years. After my mother was diagnosed my grandad who has now passed was also diagnosed, but his was a very late onset so his symptoms were not as extreme.

I can see my mum gradually getting worse and loosing herself more over time which is quite hard to cope with. I am the eldest of 3 children and we do not have my father in the picture as he passed when we were young. Iím just struggling with how to handle it all really because Iím only 19 years old, my sister 18 and my brother 14. We all still live at home. Iím having to look after my mum and also try and look after my younger siblings. Along with that Iím also incredibly concerned about having inherited the disease. Every time I flinch or twitch before I sleep Iíve convinced myself I have HD and this is the start of it and become incredibly anxious and scared. Im too anxious to go for genetic testing because I feel like I positive result would completely kill me.

Does anyone have any advice on how to cope with all of this? I want my home environment to be as happy as possible for my mum and my siblings but itís proving quite difficult for all of us. Any ways I can make my mum feel better and reassure my siblings that everything will be okay?

Thanks!
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Old 20-09-18, 01:32 PM   #2
GLO550P
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Join Date: Sep 2018
Posts: 2
Default Re: New to forum- looking for some advice

Quote:
Originally Posted by lucybee View Post
Hi there, totally new to this forum just looking for a bit of advice.

My mum was diagnosed with HD just over a year ago. We had known something was not right for years. After my mother was diagnosed my grandad who has now passed was also diagnosed, but his was a very late onset so his symptoms were not as extreme.

I can see my mum gradually getting worse and loosing herself more over time which is quite hard to cope with. I am the eldest of 3 children and we do not have my father in the picture as he passed when we were young. Iím just struggling with how to handle it all really because Iím only 19 years old, my sister 18 and my brother 14. We all still live at home. Iím having to look after my mum and also try and look after my younger siblings. Along with that Iím also incredibly concerned about having inherited the disease. Every time I flinch or twitch before I sleep Iíve convinced myself I have HD and this is the start of it and become incredibly anxious and scared. Im too anxious to go for genetic testing because I feel like I positive result would completely kill me.

Does anyone have any advice on how to cope with all of this? I want my home environment to be as happy as possible for my mum and my siblings but itís proving quite difficult for all of us. Any ways I can make my mum feel better and reassure my siblings that everything will be okay?

Thanks!
Hi lucybee. First of all my thoughts and best wishes go out to you at this difficult time.

I would recommend that your first point of contact should be the Scottish Huntington's Association.

The Parliament in Scotland has established and funds a National Care Framework for Huntington's which seeks to accommodate the fact that "every person's experience is unique and requires to be treated as such". Check out their website on the link above and be brave and make the call to them on 0141 848 0308. I hope that this maybe the first step to getting you the support that your Mum and you as her primary carer will need.
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