Dad diagnosed with Huntington's disease

[AnotherGirlsParadise]

My dad was diagnosed last week, after he fell off a stepladder. It’s a terrible, awful shock – there’s no family history of Huntington’s that we know of, as most of my dad’s family died relatively young, probably before the average age of onset for the disease. Looking back, he’s been symptomatic for many years, but we just had no idea. We just thought he was clumsy and aggressive and a hair-raisingly terrible driver. He made my life a misery at times, and can be a really nasty piece of work, and now all I feel is guilt for hating him for it – how much of it was actually him, and how much of it was the disease talking?

I don’t know what I’m trying to get out of posting this here. I’m frightened, and feel so alone. It’s not even as if anyone on here with experience of Huntington’s can say anything to reassure me – it’s an unremittingly grim illness and every day I’m filled with fresh terror.

I'm frightened for myself, and for my DC - there's a 50/50 chance of inheritance. I've been referred to a genetic diseases counsellor at Addenbrooke's, to discuss testing.

I haven't slept for days. I don't know what to do.

Bumping. I just need someone to hold my hand.

I don't have any experience if this disease but didn't want to pass by without saying anything. Have you contacted any of the Huntingdon's disease organisations?

here is a hand. You poor thing, what an enormous shock on so many levels.
Can you see your GP for some advice while you wait for the hospital appointment?

I feel for you - you seem very stressed and a shock diagnosis is like a form of grief.

I'm really sorry to hear this.

Don't feel guilty about your past feelings about your Dad. As you said you don't know how much was him/Huntingtons.

I'll keep my fingers crossed for you re the genetic testing. A friend has Huntingtons, he was tested in his early 30 as he didn't feel ready before then. He felt more settled once he knew even though it wasn't the result he wanted.

That must be a huge shock
Do you want to find out if you will develop it too? I'm not sure whether or not I would want to know, iykwim.
Some of my patients have it, it is a particularly difficult diagnosis in some ways.

I have no direct experience with Huntingdons disease and you must have so many unanswered questions. Get a note pad and write things down as they occur to you, in my experience the stress levels you suffer during medical appointments tend to turn your brain to mush and you forget to bring up questions you need answers to.
I know googling stuff can be a double edged sword, but arm yourself with knowledge. Do you have any real life support?

I'm sorry that you have had this terrible news , I would agree with the pp that you should contact the Huntingtons organisations as there is probably people for you to talk to who have been in the same situation , it's unfortunately a bit like being in limbo land until you can get some answers . Best wishes x

Holding your hand. This is just an awful thing to hit your family. Yes it's unrelentingly grim but your Dad is still your dad and actually

Talk to your GP about the sleeplessness and worry. My advice ( and it's easy to say this I know) would be to put a mental lid on the worry box till you know you have to worry. It's 50/50 you may have inherited it BUT that's 50/50 you are normal and if you are normal it's not a problem for your kids at all.

Much hugs

That's good advice Tweenage.

Huge hugs. I have a friend whose mum had HD and my friend has been showing symptoms for a couple of years too. It's terrifying.

It must be terrifying to have genetic testing, but would you be more relaxed knowing about it or not? The HD Association - hda.org.uk/ - is very helpful too.

It's in my family too OP, my mum's second husband has it, his mum has it, and there's a 50/50 chance that his children, my half brother and sister, will have it. Stepdad refused to get tested. He has every symptom - irrational with money, clumsy, the jolts and shakes, but doesn't want to lose his driving licence by taking the test. Just be aware that you don't have to take it. How old are you OP? Symptoms normally start in your 40's/50's. If you do take the test and don't have it, it can't skip a generation, so there's no way your kids can have it. for you.

To echo Helen I've just read on a help website that people see the 50% risk for having Huntingdon's as a greater chance than the 50% chance of not having it. I suppose the hard decision is deciding whether to get tested yourself. I'm not sure whether children can be tested until they reach 18 or perhaps with counselling they may be allowed to test earlier, I don't know.

hda.org.uk/hda/factsheets

Sorry, just to clarify, I was trying to point out that Helen was right.

I'm overwhelmed by how lovely you've all been - thank you all so, so much. I don't want to miss anyone out, so I'll just try to answer questions.

I don't think I want the testing. My mental health is already quite fragile, and I overthink everything - I'd just dwell on it, constantly. I'm willing to go for counselling about it though.

I'm 31. My dad's neurologist reckons he's been symptomatic for at least 10 years, most likely much longer.

My GP has been unbelievably kind. He admitted that his knowledge of HD is limited, as it is for most GPs, but he's doing his best to get support for me.

Another I've just read a statistic on an American website which says 1 in 5 relatives get tested. I was trying to think what I would do and with my personality I think I would be better off not knowing for sure. Your doctor sounds lovely.

Hi AnotherGirl,
I've looked after people with Huntingdon's so have some awareness of it
Poor you having so much to take in now not just worrying for your father but also worries for yourself and your DC
I hope you have a wonderful genetic counsellor who is able to hear you saying that you think, on balance, you'd rather not have testing ATM
IMHO knowing is only really going to be good if it's a negative result. I think if I were you I'd be inclined to hold onto the hope involved in not knowing
Also give yourself time to adjust to your DF's diagnosis
Thinking of you

Adding a hand to hold. My mother tested negative for Huntington's in May despite having all the symptoms - turns out there are various faulty genes that have much the same effect. I know everything seems unremittingly grim at the moment, but at least your dad has a diagnosis, and there's a lot known about Huntington's, and more knowledge can only be a good thing. And you have the possibility of finding out whether you're in line for the same, which depending on your perspective could be a sight better than spending the next twenty years symptom spotting and fretting (and means you're less likely to go into total denial, which in my experience is extra hellish for the family).

Good luck, OP. I hope you manage to navigate this one without it driving you insane.

Hi OP. My best friend has just gone through all of this. Her sister was diagnosed 2 years ago. There was no family history at all, so her parents and sisters have all had genetic testing. She found the genetic counseling really helpful as it helped her to visualise both what had happened and her own risk.

The 50/50 chance is not always true. We later found that her father was close to the number of CAG repeats on the Huntington's area of the gene to be diagnosed, but not quite. He's in his 80's now so he's unlikely to exhibit any symptoms that won't be confused with dementia. Her sister had spontaneously mutated the extra repeats. The rest of the family were all clear of the disease and all were within the region where there was no danger to the next generation.

It's been a long and difficult road, and will continue to be so. Her sister made several suicide attempts, though were were later told this is entirely typical of that stage in the disease. She seems a lot happier now and is coping fine, but it's entirely likely she will die within 18 months.

Looking back, it's hard to tell if it could have been spotted any earlier. She's always had periods of being quite difficult and, because there was never any family history, the physical symptoms were initially being investigated by a neurologist. The Huntington's test was just one of a load of screening tests they did to eliminate the unlikely options.

I strongly recommend the genetic counseling. If you can, take someone with you (friend took both her ex husband and her current boyfriend) as it's easy to miss things in the emotion of the experience. Be aware that it can take some time to complete and the wait for results, if you do decide to get tested, can be horrific. Be also prepared for the guilt if it transpires you are free of the disease and others in your family aren't.

I wish you the best

Hi OP. Here's a hand for you.

We have HD in my father's side of the family. As a teenager I remember my uncle being terribly shaky with the disease. The HDA were very supportive so I would recommend contacting them. After the family couldn't look after him anymore, he went into care where he improved a lot. The nurses were able to cope much better than family when he refused to eat or shave or became difficult.

My dad had the test in his 40s and was clear. I think he just wanted to know so he could plan his life. We had lots of counselling as a family first. It was a relief knowing that my children will be ok. It's probably too soon for you to get your head around the idea of testing yourself but maybe after you've had some time to think it through...

You've had a terrible shock. Please seek out support and counselling. All the best. X

Hi op I've got Huntington's disease pm any question or ask here my mum had it so did her brother and dad I've got 2 untested sisters and my dd is 17 and untested xxxx

hd.org are really supportive xx