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Huntington's disease support thread

(12 Posts)
BeautyGoesToBenidorm Tue 16-Feb-16 10:40:19

Following on from the guest post about Alzheimer's, more and more of us who either have, will develop, or are being tested for Huntington's seem to be popping up. I thought it may be helpful to start a thread for those of us living with this horrible illness, whether it's us or another family member or friend suffering.

Chat, support, advise, or just rant - I hope we can all find this useful smile

Indiaplain Tue 01-Mar-16 20:07:00

Hi, I have a good friend whose mum has huntingdons. We have been friends for years, but it is only really now (we are mid thirties) that I have begun to really think about what she is going through.

Her and her husband have decided not to have children, and she has decided not to get tested yet. I think I feel life must be hard for right now, as all her friends, including me, have dc's and our lives have changed so much. Hers has too, obviously, but her not having children due to the risk of huntingdons is painfully obvious now in a way it wasn't 10 years ago.

I'd welcome any advice on how to support her and her husband. She is going through a tough time at the mo with her mum whose health is deteriorating.

I hope you don't mind me posting here as my experience isn't very direct but it is an awful illness, and I love my friend very much. I have often wondered about her decision not to be tested.

What is your situation, if you don't mind me asking?

iamhopeful Tue 01-Mar-16 20:15:39

My dh's mum died of huntingtons when he was younger. He did get tested before we got married, we still planned on getting married but we knew it would have a bearing on our family choices. It turns out he doesn't have the gene but his sister hasn't been tested. She and his dad are very much still in denial and never talk about it.
I'd have loved somewhere like this to seek support while we went through testing so will gladly help out if/where I can. I know we are one of the lucky ones.

BeautyGoesToBenidorm Wed 02-Mar-16 11:14:25

Indiaplain, of course I don't mind - that's why I started the thread, it's here for anyone affected in any way smile

My dad was diagnosed last August - we had no idea Huntington's was in our family. You can imagine the shock and fear that followed. He'd been what I'd describe as 'not quite right' for some years, with savage moods, terrible coordination, slurred speech, and awkward movements. He was due to see a neurologist that November (motor neurone disease and even vCJD were mooted), then fell off a ladder one day and cracked a rib, the paramedic who saw to him (he's 71 and quite fragile) noticed that he was lurching about and asked if he always walked like that. He was admitted to hospital and referred to the neurologist. She immediately suspected Huntington's, the blood test confirmed it a few weeks later.

My dad still doesn't seem to understand the full implication of the disease. He's convinced it's something he's 'caught', and is insistent that neither of his parents had it (we suspect it was his mother who may have had it, she had personality traits and physical mannerisms very like my dad's). He keeps telling me that I'm fine and will test negative. He made my life a misery when I was growing up, I had a lot of counselling to come to terms with his treatment of me, and all that seems to be negated now because it was very likely Huntington's talking. It's a very complex thing to deal with, emotionally - sufferers can be violent, paranoid, irrational and aggressive. It's hard to empathise, or indeed sympathise, when they're like this and I completely understand the struggles that carers have.

I'm near the end of the counselling process that precedes testing. I changed my mind a hundred times a day in the months leading up to the counselling; I didn't want to know, to begin with. I wished that my dad had never been diagnosed. I wanted to bury my head in the sand completely, and try to carry on with life. Yet in the past few weeks, I've gone from that to knowing I should - and absolutely want - to be tested.

It's hard to explain the shift in thought, but as I have my DH and 2 young DC (the actual test will be carried out the day after DS1's fifth birthday, unfortunately), I have to be able to plan for the future in a rational way. If the test is positive, which I'm preparing myself for, then I need to put things in place whilst I'm still healthy and free of symptoms. I need time for the family to adjust to our new reality. I want DH to be able to access counselling, to prepare him for the inevitable. I also want to be able to participate in clinical drug trials - there are several happening as we speak.

I'm under the care of Addenbrooke's hospital, and their dedicated Huntington's research unit is excellent. I know I'm in good hands, and that's taken some of the terror away. Not all of it, but enough to help me live through testing without breaking down.

The truly saddening thing is that even if I test negative, I still have to watch my dad die in one of the cruellest ways possible. I completely empathise with your friend - so few people know the reality of Huntington's, the brutality and the sadness of it. It's a very lonely place. Is she in touch with the Huntington's Disease Association? They can send someone out to her house (and her mum's) to talk through everything and offer practical advice on living with the disease, both as a carer and as a sufferer. They're very kind and have been a massive help to my parents.


BeautyGoesToBenidorm Wed 02-Mar-16 11:18:15

iamhopeful, I'm so glad your DH is free of the gene. His sister's choice to not be tested is understandable - has she been through any genetic counselling, or is she resistant to the very idea?

Sadly ignoring it won't make it go away - I wish it did! Please feel free to PM me if you have questions, or just keep posting. This is still a massive learning curve for me, I want to share as I go along.

dazedandconfused17 Sun 13-Mar-16 18:06:45

My DH has it in the family. Thankfully he tested negative, but that has kind of messed him up as well - two of his brothers are now symptomatic and his dad died from it. It's just a hideous hideous condition.

Would love to offer any help I can.

BeautyGoesToBenidorm Sun 10-Apr-16 19:40:59

I had my final counselling appointment pre testing at Addenbrooke's last Wednesday, they took my blood and now the wait begins - I should get my results at the beginning of May.

I felt strangely euphoric once my blood had been taken. I guess it just feels 'good' to finally be on the way to knowing if I've inherited HD or not. I just want to find out so I can begin to move on, whatever the result.

StuffandBother Sun 10-Apr-16 20:43:02

Bloody hell Beauty, I truly hope you're clear .. I'll be rooting for you. No experience myself, just stumbled across this post. It's a long wait but you sound pretty mentally tough so I'm sure you'll cope with it thanks

BeautyGoesToBenidorm Sun 10-Apr-16 20:46:02

Thanks Stuff, that's really sweet of you smile Believe me, I wasn't very mentally strong at all for a while there, I was a horrible mess when my dad was diagnosed!

I'll definitely update when my results come through. It still feels a bit unreal.

StuffandBother Sun 10-Apr-16 20:58:18

What are the odds? Is it 50/50 .. Or have I been watching to much Casualty? I'm glad you feel supported by your Huntington's team, I have my fingers firmly crossed for you

BeautyGoesToBenidorm Sun 10-Apr-16 21:03:08

It is 50/50, yeah. It really is like the flip of a coin. Luckily I'm my dad's only child, so there are no other siblings to worry for.

They've been wonderful at Addenbrooke's so far, and more than understanding whenever I've had wobbles. It makes all the difference.

I haven't actually been following the Casualty storyline - it was all a bit too close to the bone at the time - but I'm pleased it's made people a bit more aware of HD. It's a truly awful disease, and regardless of my test result, I fully intend to carry on with fundraising etc!

Sixpencenonethericher Mon 11-Apr-16 11:39:19

Hiya I've got it been symptomatic for the last 2 years
My mum had it died of cancer not HD
My mums dad has it died at 52
My mum had 2 brothers one didn't have the gene but one did and has passed away from HD
I have 2 younger sisters they aren't tested one has 3 children one has none
I have one daughter she's 18 this year
If I can answer anything or help in any way just shout xx

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