To be worried about my friend and her partner with Huntingtons?

[Stanwyck]

My friend J has huntingtons. Lovely man, not a bad bone in his body before the illness.

Through him I met S, and they started dating. Two weeks after they started dating, he revealed to her he had huntingtons. At the time I hoped she wouldn’t stay with him because while I sympathised with him, it was early days and I knew how bad it would get and would be a carer at 40ish.

Now he lives with her and he is deteriorating. While she sought medical advice, they said they didn’t think he was depressed and provided no medication.

Yesterday she admitted she is sometimes scared of him. He is pouring water in her shoes to stop her going out, hiding her belongings, having tantrums, being nasty, smearing food on walls and she is struggling.

I don’t know what to suggest or how to help. Does anyone have advice?

Is the house in her name only? If so she needs to chuck him out and change the locks. Having a disability doesn't excuse being an abusive prick.

His twattish behaviour isn’t anything to do with huntingdons. Plus there’s no reason why you shouldn’t date someone with huntingtons! Or even marry them if that’s what you want!

Sounds possible the behaviours are symptomatic of his progressive illness. She can contact social care but she should consider if she wants to continue in this relationship. Does he have a specialised nurse involved. I have worked with clients with Huntingtons and due to the damage it causes to the brain the behaviour will get worse sadly.

@DenholmElliot11 this is something she mentioned early on. How can she tell the difference between his shit behaviour that isn’t Huntingtons related and what is? She said if this was an abusive man she would leave but she is putting this down to the disease.

I know there isn’t anything wrong with it but she is a vivacious outgoing woman in her early 40s and this is her life. I support her no matter what but wish I could help her/them.

A big part do the problem here is he is an American and she is from the UK.

He never wants to go home again and essentially just moved in with her after his diagnosis.

Huntington's does cause damage to the brain which can cause extreme behaviours not saying she should have to live like that but it isn't going to get any better only worse.

@Louisetopaz21 she just keeps saying she can’t leave or abandon him and will see it through to the end.

but that was before she saw the full reality.

No, he has no nurse. They have regular appointments with a medical professional but that’s all.

Huntingdons is a vile and cruel disease. The behaviours are part of the illness. It will get worse. I have no words of comfort here.

Having worked with a couple of individuals with Huntingtons, I would say that this behaviour is entirely consistent with the disease. It is a very sad disease and incredibly distressing for both the sufferer and their family/friends.

Adult social care would be my first port of call. She needs respite. Also look for any local support groups/charities.

Huntingdons can cause behavioural disturbances and neuropsychiatric problems as well as severe physical problems. I've nursed people with this disease and it is extremely challenging and he will need specialist care at some point. She needs to know what she's getting into. It is also a terminal disease so he is likely to be experiencing psychological difficulties due to this as well. I suggest she looks into all the possible ways this can go before committing to him. There is virtually no prospect of her being able to experience a relatively normal relationship with him and she will effectively become his nurse, with a certain amount of having to cope with psychiatric illness and behavioural problems as well, depending upon the effectiveness of medication regimes and who is managing his care etc.

She needs a referral to social care but she could ask if a huntingtons nurse can support.

I wonder if there is more than she has admitted?
It sounds awful and clearly she should leave as soon as possible, I'm thinking there is some sort of trauma bonding going on here?

Yes it probably is linked to his disease. Huntington's sufferers can develop psychosis. My friend's husband turned into a completely different person because of Huntington's. It was psychosis, not "twattish behaviour".

Surely if he is American, he won't be able to access social case support, unless he has indefinite leave to remain?

@Mrsbloggz im not sure.

Essentially what happened was they didn’t live together before Covid. Then Covid happened and they quickly bubbled. He now lives with her in her hometown where her family are.

Personally I feel some anger towards him. I feel he has been selfish and taken her life away. Also didn’t tell her about the diagnosis until some weeks in.

Huntington's unfortunately turns people into "abusive pricks" as you so nicely put it. It isn't their fault, it's the damage the disease does to the brain.

About 2 years ago she confided to me and another friend she was thinking of leaving but didn’t want to abandon him.

we said she could still help him and get support for him as a friend.

But she’s said she can’t leave him. They’ve been together for 6 years.

Chances are, he was completely in denial about the realities of what lay ahead. I have known of parents who have chosen to have children after diagnosis.

Back in the day Huntingtons was often misdiagnsoed as Schizophrenia because the symptoms are similar. They used to be put in mental institutions. Huntingtons is a nasty one. These can easily he caused by the disease since it can change your personality. This is just the beginning. Not ruling out that he's acting out but impossible to say unless he confesses himself.

We lost a family member (through marriage) to Huntingtons a few years ago. He was in his 70's. His aunt is in her 90's and she's still alive with it. An example of the misdiagnosed Schizophrenia. Everyone at the village knew this "crazy" family.

@DonningMyHardHat Yeah, maybe.

his sister was also diagnosed last year. She totalled her car in an accident and fiancée left her. I remember my friend saying how could you leave, I could never leave etc…

but what we can all handle is different. I imagine she has the cognitive dissonance of this feeling like abuse but having to remind herself it’s due to the illness.

I’d encourage her to get individual therapy and hope the therapist helps her come to the right decision herself

Even a brief Google search would have prevented you from making this ignorant and offensive remark. Severe personality changes are a symptom of the disease and are incurable. Let’s hope no one you love ever gets it, eh?

I think at this stage it doesnt matter whether the abuse stems from him or more likely his diagnosis, but either way this poor woman is being abused and it will likely only get worse.

While it doesn't happen to everyone with Huntingtons, severe personality changes and aggression certainly can be part of the disease.

He needs an urgent review by his Huntingtons team, in the UK this should be a neurologist at a specialist centre. Ideally your friend should go with him to give a clear history of what is going on.

My experience is that the Huntington's Disease Society is very helpful.

Unfortunately if he is seen by Healthcare professionals with no experience of Huntington disease (which is most people as it is rare) he is unlikely to get the right treatment.

I'm a Palliative Medicine Consultant who used to see a lot of Huntington disease patients.