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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 12-05-10, 03:59 PM   #1
EachOne
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Join Date: May 2010
Posts: 45
Default Confused and Terrified

Hi
Firstly, how relived I was to find this forum.

My dadís dad left him with his mother when he was roughly 5 years old and never saw him again. My dadís now 56. About 4-5 years ago my dadís uncle found out that my dadís dad had died. After finding the birth certificate we found out he had died from Huntingtonís disease. Now really, this was no big worry to our family as we did not really know what it was or how serious it was. So, we just went on with our normal lives.
Iíve noticed my father has become weak in the last year or so but Iíve only really started to notice these last few days and putting all the pieces together.
This is what I have noticed:
He is having very difficulty sleeping for the last year or so and relies on sleeping tablets most of the time.
My dad seems to have Ďdowní days where he just seems sad
My dad sometimes gets has nervous twitches, this really came to issue yesterday when I sat down next to him and he just moved his head up and looked up to the right around 9-11 times.
My dad told me the other day he nearly lost his balance in the garden the other day.
Now, after looking on the internet I am absolutely terrified that he has Huntingtonís disease. Iíve discussed it when him very little, mostly about his twitching and made a joke about the HD as a way to approach the subject but he just seems to think itís nonsense and says after a few happy weeks in doors he will be fine (there has been a Ďfrostyí atmosphere between me and my mum, but something I am certain to stop now).
Really, I honestly donít know what to do for the best, I want to talk to him and tell him my worries but then, what are they going to do? He will just be upset and ruin the rest of his life, though I have said the symptoms above, the only one that really gets to him is his sleeping. If he goes to the doctor and they find out he has HD it will be absolutely devastating for the 4 of us, so is it better to keep my concerns quite? .....
Also, with the symptoms I have described, Is it near certain he has HD or could it be many other (less evil!!!) diseases!
My dad is my absolute rock and I love him so much, I could not get any sleep last night. Many thanks for any replies and sorry if I have gone on a bit or made no sense whatsoever.
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Old 20-05-10, 12:59 PM   #2
kayleigh
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Join Date: Sep 2008
Location: leyland lancashire
Posts: 1,202
Default Re: Confused and Terrified

imm rrreally really sorryy to hear abouttt this it mmust be hhard for you all:(
im gladd youu have fouund us on thhis forum:)x
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Old 26-05-10, 09:47 AM   #3
Dolphin
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Join Date: May 2008
Location: Surbiton
Posts: 651
Default Re: Confused and Terrified

Hi Dave

I can remember how absolutely shocked I and my sisters were when we first heard about HD. Terrible temptation to run all over the internet and scare yourself silly. There were very many sleepless nights for us - but eventually even the scariest things get put into perspective. HD is a very very slow disease and there are lots of research projects going on into it.

My best advice would be to read the set of fact sheets from the HDA. They are very sensibly written. Even though things may be frosty between you and your Mum do show your Mum the fact sheets and confide in her. It is such a lot to get your head around you need someone to offload on - your Dad may not have HD - but I think you need to be able to talk about what happened to your grandfather.

Hope this helps you. My Mum has HD and I will have it and for my 2 children the odds are 50/50. But the birds still get up every morning, the sun still shines and life is for living.

Dolphin
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Old 26-05-10, 10:17 AM   #4
Sean
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Join Date: Aug 2009
Posts: 78
Default Re: Confused and Terrified

Quote:
Originally Posted by EachOne View Post
Hi
Firstly, how relived I was to find this forum.

My dadís dad left him with his mother when he was roughly 5 years old and never saw him again. My dadís now 56. About 4-5 years ago my dadís uncle found out that my dadís dad had died. After finding the birth certificate we found out he had died from Huntingtonís disease. Now really, this was no big worry to our family as we did not really know what it was or how serious it was. So, we just went on with our normal lives.
Iíve noticed my father has become weak in the last year or so but Iíve only really started to notice these last few days and putting all the pieces together.
This is what I have noticed:
He is having very difficulty sleeping for the last year or so and relies on sleeping tablets most of the time.
My dad seems to have Ďdowní days where he just seems sad
My dad sometimes gets has nervous twitches, this really came to issue yesterday when I sat down next to him and he just moved his head up and looked up to the right around 9-11 times.
My dad told me the other day he nearly lost his balance in the garden the other day.
Now, after looking on the internet I am absolutely terrified that he has Huntingtonís disease. Iíve discussed it when him very little, mostly about his twitching and made a joke about the HD as a way to approach the subject but he just seems to think itís nonsense and says after a few happy weeks in doors he will be fine (there has been a Ďfrostyí atmosphere between me and my mum, but something I am certain to stop now).
Really, I honestly donít know what to do for the best, I want to talk to him and tell him my worries but then, what are they going to do? He will just be upset and ruin the rest of his life, though I have said the symptoms above, the only one that really gets to him is his sleeping. If he goes to the doctor and they find out he has HD it will be absolutely devastating for the 4 of us, so is it better to keep my concerns quite? .....
Also, with the symptoms I have described, Is it near certain he has HD or could it be many other (less evil!!!) diseases!
My dad is my absolute rock and I love him so much, I could not get any sleep last night. Many thanks for any replies and sorry if I have gone on a bit or made no sense whatsoever.
I don't want to sound pessimistic but lets be realistic...

If his father died of it then it's 50/50 he has it himself and it was decided at the moment of his conception. It could be something else entirely but to be honest they do sound like the start of classic HD symptoms, almost exactly the ones that led to my mothers diagnosis.

Unfortunately there is often a massive amount of denial that goes along with this disease. Some can accept there is the potential for them having it, others will just want to pretend it doesn't exist and won't acknoweldge or talk about it even when showing some symptoms.

If he is happy enough, not injuring himself by falling, not having bizarre mental issues or being a danger to others (through driving dangerously or something) then maybe it's better to leave it alone until (if) things get worse and broach the subject again at a later date. But by being in denial he is potentially missing a clear diagnosis meaning you're all in the clear and no more worries or by being diagnosed - treatment, medication and various forms of help which may lessen any symptoms or state / NHS help later.

Can you not discuss it with your mother or any of your siblings?

I feel for you - difficult situation for sure.
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Old 07-06-10, 09:37 PM   #5
Highland Moo
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Join Date: Feb 2010
Posts: 8
Default Re: Confused and Terrified

I can kind of relate to how u are feeling, my dads dad was adopted and so when he was diagnosed with HD we had no idea what it was all about. Sadly my grandad died after yrs of illness and the gene has passed to my auntie and potentially her son and so on.

I was having a few issues with the whole HD thing as I would like to start a family soon and wanted to be tested before i made that next step in my life. However my dad took a long time to come round to the idea, as my results could reveal his results!! (if i had hd then he did!). Eventually after many family chats, my dad decided to get tested, and lucky for us his results came back neg for the hd gene.

The reason i am telling u this is because it is not something u can cope with on ur own and if u have ur worries u have to try and be strong and discuss it with ur dad and just ask him to at least read the info in fact sheets (on this website) but also maybe spk to someone at HDA or his GP. U cannot force him to do anything he doesnt want to but u can let him know how worried u are and what effects its having on all of you.

Hope this helps, take care and try and keep ur chin up.
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