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.

But that pretence is all part of HD I think.

I have skipped through the thread. I am a RCA for the HDA in hampshire and Berkshire. There is one for each county. If you think it would benefit to talk to them we are very approachable. There are also a number of local branches which are very supportive. This is not the route for everyone. Seeking support from those you know is better for some. IF I can be of any assistance I am happy to share anything I know.

Eve :-)

yes, you're right, i have spoken to my cousin who's mother very obviously had it and was in a specialised independent living unit. she denied it the whole time. she died last year and never accepted that she had it.
why do people not talk about this disease? why is it almost more shameful than PD, or MND?

thanks eve34.
i am fairly clued up on the disease itself.
it's more the personal issues it throws up that i find difficult. they are so complex and different for everyone as it all depends on an individuals family dynamics.
but please hang around just incase i need to ask you something.

Good point DB..no one ever talks about it.

I think not a lot of people know about it tbh, but the profile needs raising. I have found The Huntindons Association very helpful

I think because of the strong genetic element -- admitting you have HD means admitting that there's a high chance you've passed it on to at least one of your children, while if you have "something else" then you can delude yourself that it's not hereditary. People who have something hereditary and fatal often feel very guilty about it (a family friend has something I can't remember the name of that causes repeated strokes and is devastated that she's passed it on to the one of her DDs who has children (other DD hasn't been tested yet)).

i didn't used to talk about it, but it ate me up.
now i tell people.
i find it healthier to be honest about it.
if people ask how my mother is or what kind of relationship i have with her, i just tell them straight out that she has HD and is a bloody nightmare.
but i rarely meet anyone in RL who knows much about it.

My RE teacher at school's father had HD. When the test was developed he and his sister were on television talking about it.

good point portandlemon. do you think the guilt is so overwhelming that they can't accept it, or that they deny it to try to protect their children..so as not to worry them?

Not a high chance a 50% chance so an equal chance

Yes, but if you have (say) three children then there's a 50% chance for each of them, which means there's an 87.5% chance you'll have passed it on to at least one, which I would describe as high.

well, if my kids have inherited their fathers young heart attack gene, they needn't worry about HD.

night ladies. thanks for helping me get this thread off the ground.

It is a horrid disease. I can not give anything positive, the implications afect every aspect of the person, and seeing those you love slip away each day must destroy a famly, and to know your children to maybe at risk must just be the last straw. i have to be honest I have worked in different areas for over 20 years and til this job have never met such a group of wonderful people.
The disease is dfferent for each person depending on the damage to the brain. The impact to each family member is different. Memebers in denial will not see it regardless of what is happening and I have seen some very desperate people who can not see the problems they experience. The love and patience family members show goes beyond anything else I have ever seen. People draw from those around them and please do reach out to anyone who has offered help. It is easy to become isolated.

HD affects 1 in 10000 unlike ms 1 1000 - I believe. We believe there are 6000 suffers in the UK. This is a rare disease, although the impact is huge. HDA trys hard to get's it's voice heard, but we are a very small charity - staff in the uk total 24. So any suggestions, fund raising ideas or anything would fall on grateful ears. We want to get ourselves out there.

Isn't stem cell research offering some hope?

oh dear eve34,
"The love and patience family members show goes beyond anything else I have ever seen".
i hope i don't shatter that idea the next time my mother throws a tantrum in front of my kids and i throw her out, and want to call her a selfish attentions seeking nightmare. please don't judge me if i do.
i'm glad that is your experience though.

my cousin (whose mother died recently) has offered me support and is available to talk anytime. and also i talk openly with my siblings so that helps too.

i think the occasional soap opera story line helps to get the message out. didn't they have that on emmerdale once and maybe more recently eastenders (i'm not sure, i don't watch it)

I certainly wouldn't DB it is awful.

Once when we tried to get my sister sectioned as she was so terrible and violent, she ran away before the doctor arrived....

There was a storyline in eastenders yes and was handled really we.. Casualty also did a shocking story line which sent shock waves through the HD community.

You are only human - I have said this many times, you are allowed to be mad, angry and throw things. It is the unconditional love I see day in day out that makes me try my best each day.

Sure you are doing everything you humanly can. Don't go beating yourself up.

I will get off my soap box, honest. Reseach is promising, although I know it has been said for a long time, but things are moving forward and the Euro HD is taking things forwards arcoss a wide number of countries all working together to find a cure/treatment.

i once called her GP for a home visit after she'd been in a darkened room for days. She emerged long enough to tell me she nearly killed herself last night.

the GP came, she convinced him she was fine and that i was the one who was depressed.

(i was 16 and my mother was suicidal, damn right i was a bit down )

some doctors are unable to see when they are being manipulated.

Oh God, how awful and Snap snap snap.

Whn we finally got my sister to see a doctor, she was so plausible and pleasant. She'd been attacking my mum 2 hours before this, but the doctor siad she was fine.

Very manipulative unbelievably so....

loonies.

(i'm feeling a bit unPC tonight )

It is so frustrating you know people need help, but the GP is no expert, and although the first point of call for any action, needs to have it spelt out where ever possible. It is an up hill battle each time regardless of the different situation people, professionals do not know enough about the disease.

My friends' husband has it. His younger brother died 10 years ago aged 40, and his father also died of it, but not until his 70's.
My friends husband is now 55, he is attending brilliant clinic in Cambridge at Addenbrookes, I can find out more if you like.

My friend's daughters don't want to be tested, one is my goddaughter, she is fine about it but the older one has a big problem with testing and her fathers illness. She is 24.

I have seen my friend's husband deteriorate, she has gone part time to care for him and spend more time with him, although he still works part time himself.

He refused to acknowledge that he may have it, although his wife knew long before it was diagnosed just from the signs. I have known them 23 years, so have seen the changes in him and the family.

I don't really know what else to say, or even if this is useful, but just to say, you are not alone.

It does help alibubbles, to know that this is happening to other families. Not in a sadistic way, I wouldn't wish it on others, But it does help me to feel less alone in dealing with this.

i wound up in tears last night as i went to bed. i think i remembered why i stopped the last thread i started about this. it's hard to talk/think about and as there's nothing positive about it, it's too much.

when i talk about it like this it feels much bigger. i don't want to go around pretending this isn't part of me, but i need to be able to function every day. life goes on and i have to get on with it.

meh.