Experience with Parkinson's?

[Neoflex]

My mil has just been diagnosed with Parkinson's and my husband is quite distressed. Is there anything I can say to comfort/reassure him? I don't know much about the disease, only what is available via google.

We live in a different country to mil, she's in the UK, we are not. She lives with a "boyfriend" she met online, who basically uses her as a housekeeper. We're worried he could abandon her if things get tough.

Even worse is that mil got the diagnosis on a holiday abroad. She sent a picture of her letter from the doctor asking my dh to translate because she didn't really understand anything. He's on the phone explaining to her now

Any advice is really appreciated

Friend of mine had it. Not a close friend so I don't know the details. She carried on with a full life for 3-4 years, including playing in a music ensemble, despite being a bit shaky. She went into a nursing home, and died I think less than a year later. Don't know how typical this is.

Thanks Mere. I think that would be a scenario we could actually live with. Even if the time left is short, she hopefully wouldn't suffer long.
Mil seems to be taking it all quite well considering.

You have put it under the dementia category. Was there a reason? It's not dementia but saying that Parkinson's does sometimes become accompanied by a type of dementia called Lewy Body dementia.

I didn't really know where to put it (there's no Parkinson's board) and since she has been suffering from anxiety and confusion as one of her symptoms leading up to her diagnosis, I thought it was suitable. Maybe you can point me in the right direction?
The actual diagnosis came after she fell on holiday and the doctor in the hospital recognized some symptoms. then she saw several doctors in the same hospital which eventually led to her being diagnosed and returning to the uk with a letter.
The anxiety and strange behavior was becoming a nuisance but we put it down to her being bored/lonely.

My dad had it, and the associates dementia. Parkinson’s has several symptoms - tremor, rigidity, slow movement and instability, and a patient can have them all to a greater or lesser extent. Sadly, Dad has then all in a very pronounced way. He was diagnosed in 1983, went into full time nursing in 1989, and died in 1993. He did not respond well to drug therapy or occupational health/physio and his health and quality of life deteriorated very quickly after about 3 years. BUT this was over 30 years ago. Drug thearpy has moved on massively, i believe there may be some surgical options. A guy I work with was diagnosed about 4 years ago, and is still working, rides his motorbike, and goes ballroom dancing with his wife. The outcomes for Parkinson’s patients are very different to what they once were. Parkinson’s UK is a huge source of information and support. Parkinson’s UK.
I don’t know your mil’s domestic situation, but it can be a hard illness to manage, and I think you may be right to be worried that her partner may drop her if he’s a bit of a snowflake or really only wants a housekeeper. Would she consider moving to the UK if he health deteriorates?

I am so sorry. My mother in law had Parkinsons too. She was alright for a time but it was awful after a while and towards the end. Your poor mother in law sounds as though she isn't in a very secure place which won't help. Is there any way she can get a place of her own, eg a ground floor flat with walk in shower? She needs to think of her own needs now.

The first step is to get her to see her GP for a neurology referral (I'm a GP). She may not have Parkinson's Disease. PD-type symptoms can be caused by medication and some other illnesses.

My dad has pd symptoms (he was referred for assessment almost 3 months ago and still doesn't have an appointment so we don't a totally know whether he has Parkinson's yet). I was really anxious about it because my only experience if Parkinson's has been people who are very ill with it. I searched for past mumsnet threads about Parkinson's which was really reassuring as people are all affected by it differently and some people can have their symptoms really well managed for years.

If this helps anyone, a close family member has this. Diagnosed 7 years ago and still working.

Hello @Neoflex

We are in a similar situation: MIL was diagnosed with Parkinson's in 2018 and is currently being assessed for Lewy Body Dementia (we are pretty sure she has that). DH and I live overseas.

It's hard to work out the association between the two conditions, they are both neurological diseases. The key Parkinsons symptoms seems to be tremours, rigidity, stiffening of limbs, freezing in doorways, shuffling, weakness in hands. MIL had that for a year at least before being diagnosed. More recently she has been increasingly forgetful and confused, "losing" her words, hallucinating - seeing men / wee men in the trees, in her apartment, and making up stories that she thinks are true but aren't. When we mentioned these at her last Parkinson's review, the consultant went back to her brain scans and said there was possible evidence of dementia there, so she is in the process of having memory tests. So they are separate conditions - thought it is very, very common for Parkinsons to be followed by dementia.

Her domestic situation concerns me. You / DH really need to get a handle on the financial / legal nature of her relationship with her "boyfriend". Who owns the house that they live in? Who pays the bills? What assets belong to her? Does your DH have any other siblings and have they got Power of Attorney for her? For this, it needs to be organised and signed while she still has the capacity to do so.

Courage - it's a horrible disease.

MIL was 77 when diagnosed. She has declined quite rapidly: 2-3 years ago she was fully compos mentis, walking everywhere and swimming every week. Then she came to us for a summer holiday and we were shocked at how much she had changed. She was bent nearly double (osteoporosis eventually diagnosed), couldn't carry anything like a plate or pull her chair into the table, and she'd stop and freeze in doorways. She struggled to keep up with conversations.

BTW I agree with @XXcstatic - she urgently needs to get in the UK NHS system and will need to go through the diagnosis process here. It can take a while and her GP is the first port of call.

I also agree that Parkinsons UK is a great resource. The Parkinsons nurses visited my PIL after MIL was diagnosed. They organised an application for attendance allowance, and they kick started the process of getting aids and adaptations in place for her.

*The key Parkinsons symptoms ... freezing in doorways," A colleague of mine developed Parkinsons at a very young age. He explained to me how difficult for him were tactile strips on pavements designed to allow people with sight problems to feel where the crossing points were ... too much information for the subconscious bit of his brain that deals with walking. By the time his brain had worked out that the bumps were OK, and his legs started moving, the "green man" had disappeared and he had to wait for another cycle. Interesting how measures designed to help with one disability can make things worse for someone with a different condition.

I presume freezing in doorways is a similar thing, the brain taking a while to understand that you can walk through there.

Hi everyone, thanks for your messages.
Mil has been to the gp who has prescribed medication. She says the medication has made her even more shaky than usual though? There is a 6 month wait for an appointment with the neurologist so she will just have to wait until then...

We struggle to understand mils relationship with her bf. They met online and pretty short afterward she had moved out to the uk to be with him. That was 5 years ago. He owns the house and pays for everything but mil doesn't really have her own money. She worked in a nursery for a few years just to have a bit of pocket money but eventually got too slow and old (now seems illness related?) It always seemed like he enjoyed someone to have cooking and cleaning for him and she liked that he took her on nice holidays.

Personally, I don't think he's a nice man. I asked him why his last marriage failed and he didn't even flinch when saying that his wife had been spending too much time with her sick mother instead of looking after him, and so that was when he went online and met mil. He also doesn't speak to his disabled daughter because she " wanted all this money toward a mobility scooter and it was time she started paying her own way"
He seems nice to mil in general, but he's not going to care for her is he?

Oh dear, op. Your mil is not in a good situation. Does she have any family / children in the UK? Has she got any assets of her own - pension, anything? He doesn’t sound like a keeper once she can’t fulfil the role of domestic servant anymore.

It does affect everyone differently and the rate it progresses can be very varied.

I have a close relative who was diagnosed in their late sixties. They are now mid seventies and can still walk albeit less steadily, and have no sign of dementia at all. It's not a great situation but my relative has had 9 years post diagnosis retaining a reasonable quality of life.

It’s a rotten condition. What sort of Parkinson’s is it? My MIL had Dystonia which started gently enough but became frankly terrible.
Her local Parkinson’s Group were lovely in the early stages, when she could still live independently. But that wasn’t for long tbh. I’d encourage yiur MiL to seek out similar. She died in March and I’m sorry to report it was a relief to everyone - even, I believe, to her.