Huntingtons Disease.

[Dragonbutter]

I wondered if any other mumsnetters were coping with this disease in their families or even with their friends.
My grandmother had it and now my mother has it although is undiagnosed due to her denial. She is increasingly difficult to deal with and it causes me a lot of stress. I don't live near her and our relationship is very strained.
I wondered if anyones else was in a similar position.

I think blackrock may be?

Oh gosh Dragonbutter I'm so sorry. Have you / are you considering being tested?

Yes, testing is always an option.
I've had counselling a while ago and came to the conclusion that i really didn't want to know.
Of course now that mum has it, the odds are less favourable.
I'm still of the opinion that it would only be worth testing if i got the results i want to hear. If not, I'm not sure now would be a good time to deal with the results. I have enough going on with two young children and strained family circumstances. Right now, i'm not sure i could cope with bad news.

I'm fairly stoic about it all. Shit happens and sometimes i think i should be grateful to make it to my 50s for the symptoms to begin. Not sure that makes sense, but i kind of think i could get run over by a bus tomorrow, so what's the use of worrying.

I think what i'd like however, is to be able to talk about my mother when things are bad. Right now, things are pretty good as she's finally getting help for the depression. But i haven't discussed Huntingtons with her. (long story, but she told me when i was a kid she would commit suicide if she had it, so i'm a bit reluctant )

Anyway, while things are calm, i thought i'd see who was around on mumsnet that might be able to offer a virtual shoulder once in a while when things are bad. And vice versa obviously.

I've never encountered blackrock.
Could you point blackrock in this direction if you see him/her?
Thanks.

So sorry to hear this Dragonbutter.

I don't have first hand experience of Huntingtons but my friend's mother has it (she began showing symptoms in her 50's) and her brother who is only early 40's has just been diagnosed as well.

She doesn't want to be tested and takes the same view as you that if it happens it happens.

I know that she has gained a lot of support from the Huntingtons charity which she is very involved with. Think website is www.hda.org.uk.

yes, i think there is a forum specific to HD.
But i'm quite comfy here

I shall have to enquire whether she is a MNetter - she hasn't admitted it!!!!!

She has made some good local contacts through the HDA though which have helped her.

It is a horrible illness to watch someone go through - I really feel for you.

bump?

I appreciate that you don't want to know, but have you made arrangements in case it happens? Have you made a will? Appointed guardians for your dcs? Etc.?

I don't have direct experience of the disease myself, but know that it is more prevalent in males and can hit at different ages and at different speeds, IYSWIM. I once acted for a dad trying to get custody of his dcs because the mother had HD and obviously learnt more about the disease and its progression as a result. It is a horrible disease to live with, particularly for family members.

We haven't written wills yet.
But should regardless of my genetics.
But I do have some time on my side.
I hope.

i suppose you mean from the point of view, that if my marriage breaks down as a result of my being ill with HD, what would happen to the children.
thankfully, it is unlikely i would develop symptoms until my late 40s, in which case the children will be over 18.
is there anything else i need to consider?

You should write out a care plan - bit like a birth plan - as to how you wish to be cared for in the event that you do develop the disease. i know that symptoms can develop over years, but, in some cases, it can be a matter of months.

also consider if giving someone power of attorney might be a good idea.

i don't know about the UK, but in the US there is durable power of attorney, power of attorney and medical power of attorney.

also living wills (which i don't think hold up in court here), in which you determine what you want done in certain events.

it's difficult.
right now, i'm sane, and i would be happy to accept care in whatever form suits our family at the time. although also would give careful consideration to a one way trip to switzerland (a whole other thread).
the thing with HD is that there seems to be a lot of denial once the illness takes hold and also irrational thinking. so i have no idea how i will feel at the time. i may rewrite my will into something ridiculous at a point that a solicitor may not be able to detect anything particularly wrong. i may never accept that i have a problem.

i am grateful that my children will be old enough to deal with it as adults.

'the thing with HD is that there seems to be a lot of denial once the illness takes hold and also irrational thinking.'

this was certainly the case for the famous US folk singer Arlo Guthrie's father, who inherited HD from his mother as well.

he started developing symptoms in the late 1940s but didn't die until the 1960s.

arlo decided to have testing, however, and was found to be negative.

also, if i do things like write up legal care plans and assign power of attorney. would it affect my ability to get a mortgage etc?

etc = life/health insurance

Cross that bridge when you come to it. Right now, you and your dp/dh need to sort out your wills (important whether you have the disease or not), appointing guardians, etc. You could also write out your care plan (which is not binding anyway) so that your dp/dh knows what you want now and can act in accordance with that knowledge in due course.

we did ask my sister and her husband to be guardians for the boys. but of course that's all dependent on whether she has HD or not too.
could i say in a will that in the event of DH and I both being hit by a bus that guardians would be my sister only if she was tested negative? she is 10 years older than me so it could affect her while the kids are under 18.

But that puts pressure on your sister to get tested when she may not want to - like you. Do you have anyone else who you would want and who would be willing to take on this responsibility? It is always possible to name one set of guardians but name another in case of a specified event.

Dragon I have a lot of sympathy.

My dad died of it, my sister has it, I definitely don't and my brother doesn't know.
He has decided to leave it like that, he is now 54 and shows no real sign of it at all. So I am guessing he could be getting safer but obviuosly don't know. He decided against getting tested......

I'm adopted so presume I'm OK, although I obviously can never be 100% sure.

I'm sure you relationship with your mum is strained it is such an irrational awful disease. My sister was terrible before she was diagnosed. However she was awful from the age of about 14, until she was diagnosed at 42. It was quite obvious personality wise that there was something very wrong, but Huntingdons was never thought of for some reason .

Please feel free to ask away.

I sympathize with your not wanting to be tested. but...

if you have the disease, then there is a chance you have passed it on to your children, who may in turn pass it on to their children. I do think your children, as they get old enough to process this kind of information, have a right to know whether there is a chance they have hd and also so they can make decisions about their own futures.

If you do not have the disease, your children will not have the disease - iirc it doesn't skip generations. their children.

Dragon, how long have you known about this properly? Not suspicion, but confrmed?

My brother wanted testing at first, swung backwards and forwards for a bit, and then decided not to. He was 46 when he found out that it was in the family.

I would say do not rush into a test, and take a lot of time to think it through. And I mean a lot of time, not just 2 or 3 months. More like a couple of years

Hi Fizzbuzz.
I started a similar thread to this a few months ago and we spoke then. I had another name then but i remember your sister's story. How is she now?

I've had suspicions for about 10 years, confirmed by other members of the family who also had suspicions about 1-2 years ago. I think it's only been a year since i discussed it properly with her partner.

I'm absolutely sure she has it. We spoke before about the behavioural part of the disease in that thread a few months ago. Also, like you said about your sister showing personality disorder from a young age, my mum has thrown suicidal tantrums and been odd for as long as i've known her too.

I have known that HD was in the family and what that meant for my mother and my brothers and sisters since my Grandmother was diagnosed. I think i was about 9 years old. It was the first my mum had heard of it as her grandmother had died before she became ill, so it wasn't known to be in the family until then.

Wannabe, yes, I will be telling my children as soon as they are old enough to process the info, or as soon as they are asking questions about what is up with granny? I think it helped me to know about it since i was a child as opposed to finding out later in life. It's been hard to deal with and has caused me a lot of worry but I think it would be worse if had been kept a secret from me. It also meant i could discuss it with DH before we committed to having children.

I think i will consider testing when i am 40-45ish although it's a situation i review fairly regularly. That way i will be able to recognise symptoms as they arise and will know if i am likely to be a danger driving etc. The decision to be tested is a huge one and not to be rushed into i understand that. If I was seriously considering it I would have to go through a counselling process first I think. But I really am sure that i don't want to know right now.

I wonder if i'll still be mumsnetting in 20 years and typing badly because of my chorea and telling you all to eff off.

My sister is in a home, very jerky, needs to be fed, and doubly incontinent She is 50 now, and no sign of any personality problems. Speaking is a problem for her, and we are not sure what she really remembers.

I remember discussing it with you under another name!. I think perhaps you could take a bit of comfort from the fact that you haven't displayed any of the personality problems yet. From what I understand they are often visible from a young age.

Your thing about no one knowing beacuse your
Mum's grandma died of it is quite common. Mt dads father died of it in WW2 when he was away fighting overseas, and of course no one talked about it then. It is only in the last 20 years or so it has been OK to talk about it, which is why situations like that are quite common. My mum had no support at all when he was diagnosed. She had to find out about it in the public library

I think the thing i'm finding it hard to deal with at the moment is that I feel like she had died already. The mother i knew isn't around anymore. She's a different person. I think I grieved for her a year ago.

But also, the denial makes it impossible to discuss it with her, so when we do talk on the phone it feels like dishonest conversation and therefore pointless.

If i was to talk to her about it, it would need to be face to face as the repercussions of that discussion would be a nightmare and also her DP needs to be ready to discuss it also. It wouldn't be fair of me to drop the bomb and walk away for him to clean up after me.

I live too far away, and am too skint for me to spend the money on a trip that would be dreadful. So nothing is said, we just pretend everything's fine.