Anybody know about Huntington's Disease?

[Blabbermouthy]

A friend of mine might have Huntington's disease 😔. She has decided not to get tested. She has a 50/50 chance of having it. She does not want to talk about it and is living her life for the fuller now (or so it appears on SM), which I fully respect. I'm not so stupid though to not understand behind closed doors she is suffering massive loss.

In my opinion she is showing signs aleady. She lacks empathy and her logic is way off. She gets very envious of others and finds it difficult to manage those emotions or even hide them. She didn't used to be like this. Even though she is being very difficult to be around she is still my long time friend who I want to see cared for. She lives on her own, has no partner or children so understand she will be feeling very alone with this as she isn't talking to friends about it either. She will also be facing the reality that she will never have children, because of the way the disease passes on. That will also be a grief she is suffering and she has taken aim at mothers as a result in really unattractive ways, self included.

Has anybody had experience of being a friend to someone with Huntington's Disease? How can you help somebody through a diagnosis like this when they don't want to talk and are shutting people out.

I've left her alone 😔 and just hoping she is processing the news in her own time and will work her way through it in her own way. However, I don't feel comfortable either just dumping her because she has difficult traits as a result of her possible diagnosis.

Any words of wisdom?

Unfortunately I do have experience of this. How old is she?

40

That's the exact age my friend was diagnosed

What makes you think HD if she hasn't been tested?

Because I read an article writen by a journalist that described how her disease progressed, before she even recieved a diagnosis. It's almost identical. I wouldn't like to think these traits are her as she was never like that.

Emotional blunting was the first symptom we noticed in our friend but I think there were other physical things that led to her seeking a diagnosis. There are lots of other things that can cause those emotional symptoms in your friend, Is there a family history?

Yes her father is currently in the late stages of the disease.

It is awful because she is being self centered, self absorbed, envious, no empathy, shallow, cruel even and totally illogical. 😢

I just want to make sure she is getting the help she needs, but how do you do that from a distance.

It's a very difficult situation. I don't feel in a position to call her and discuss any of this, because she appears to be in denial and with no insight or care into how her behaviour effects other people.

Maybe she already knows and that's why she's decided not to have children. My friend didn't want to discuss it after diagnosis although she did share it with us, she just wanted to carry on as normal for as long as possible

Did you watch your friend decline?

I just feel like once her parents go she will have nobody to ensure the best for her, but she has pushed the one person who would have absolutely done that away.

Is there good support for people living alone with Huntington's Disease? Will her GP proactively monitor the situation? I just don't want the disease progressing with her becoming increasingly isolated, because of her difficult behaviour. She will have no next of kin before long.

How old is her mother?

76'ish

Is her dad a similar age then? 40 is typical age for diagnosis, I'm surprised he's still around at mid 70s

The median age for appearance of Huntingtons symptoms is 40, but it can be much earlier or later. And some people live for 20 years following the appearance of symptoms. I knew someone who had symptoms for 10 years, and she eventually died from cancer, not Huntington’s.

There is a Huntington’s association which may be able to advise you.

I didn’t know her well, I should say. She was a former employee who had left (retired on ill health grounds) before I joined the organisation but used to come in to visit occasionally.

Her friends found it very hard. It’s an especially cruel disease.

They can also be traits of somebody who has undergone a huge trauma and ongoing stress.

I managed care services in which service users with Huntington's lived. It's a very cruel disease. It usually manifests around 40. The first signs are often personality changes-emotional bluntness , impatience and anger-and also frequently loss of inhibition so a client might behave in a sexually inappropriate way in public etc, for example. Later comes the issues with movement. Sufferers can appear 'drunk' and often times that,coupled with the at times inappropriate behaviour (and at times they actually do start taking more risks with drugs and alchohol) ", means that it gets confused for substance abuse sometimes. They will often fall out with their support networks as they begin to act in ways that are normally unacceptable.
The loss of control over the body increases in my experience relatively quickly-so in the case of my two clients, they were probably mildly symptomatic for a few years before diagnosis, then finally diagnosed, and within 10 years they were unfortunately very disabled both physically and mentally.

It's bloody awful. In the case of one of my service users she went from being a successful estate agent with a fiancé and a lovely life of travelling and buzzing about London, to living in my care home with no one except her sister visiting her within 8 years-and by the end of the 9th year she needed full time care.

The worst part was that as their parents had died young, probably of the disease in one case, no one had realised they had it, so diagnosis was late. The sister already had children. She had decided not to get tested and nor would she have her children tested as she felt it might be a death sentence. So so sad.

I think all you can be is be there for your friend. Try and keep her safe if you think she is acting in risky ways. Offer help if she needs it.

Lots of love to you OP. It's not an easy condition at all.

Thank for such a thoughtful and insightful response. I think I'm also experiencing grief 😔 losing a friend and feeling completely helpless in the process.

She distanced herself from me when I had a baby, which I totally understand in a position like hers. I thought she would come round in her own time, but now it seems she is suffering some of these personality traits you describe. It's such a sad situation and I think she is coping in really unhealthy ways. 😔

If you want to understand the disease and how it manifests OP I can recommend this book. It's very readable, but I think realistic about what it's like to live with Huntington's Disease: https://www.amazon.co.uk/Inside-OBriens-Lisa-Genova-ebook/dp/B00ND4ARJ4/ref=sr_1_1?crid=18PB3P6A9HUH&keywords=inside+the+o%27briens&qid=1686224064&sprefix=inside+the+o%27briens%2Caps%2C70&sr=8-1

I have Huntington's disease I don't have symptoms yet. I'm like your friend I don't want to talk about it I just want to get on with life until it's too late. I'm around your friends age. I would try and have a gentle chat with her and say you've noticed some things.

I used to work in respite care, and looked after 2 people with HD - one older lady and one very young lady (early 30s).

Both were very challenging if I'm truthful.

How would you react if your friend spoke to you about it? I don't feel able to for fear of being roasted.

likewise i have worked with patients with HD within neuro-behavioural and psychiatric units......you are being a good friend even by broaching it with her to see if there is anything she wants to talk about. My worry is that she has declined genetic testing ,she could be negative for the gene and that she may actually have something totally different going on......the stress of seeing a parent go through what she is worried she may later go through can be huge and could be responsible for her current emotional picture. I'm used to having difficult conversations, i would never be this overt as a professional but if she was my friend i would take that tack in suggesting that she may be worrying about something that isn't going to happen and suggest genetic counselling(if shes never done this)......but equally i would have to be prepared to have my approach rejected . i really feel for her not having a partner, does she have any siblings? If she does have the gene and is starting to be symptomatic ,theres so much that really she could do with putting in place now in terms of her wishes for the future ..

No siblings and no other family as far as I'm aware.

It’s a tough one. Personally I’d back well away. With how she’s acting and her distancing I think she knows she’s most likely got it. You can’t say anything to her. She needs to accept it and it takes time. Nothing you or anyone says can take it away. Please give her all the space she needs.

It's hard because if her personality has changed then she's likely not going to take it well. I would probably cry and then get an appointment with my genetic team to see if I am symptomatic. It's so hard to face up to it.