To hate, hate, hate Parkinsons's Disease?

[pointythings]

My dad has it. He was diagnosed 18 months ago, has probably had it for 10+ years. He's deteriorated a lot since diagnosis, medication does nothing, physio helps a bit but he won't do as much as he needs do because he is struggling to accept what is happening.

My parents always had a relationship of equals, now my mum is his carer. My dad can't sleep properly, and so my mum doesn't sleep either. She has to supervise his exercises, can't leave him, drive him everywhere. He struggles to sit down and stand up and he won't get one of those chairs that stands you up and tips you out - and so he doesn't get up and move about as often as he needs to.

My dad always used to outhike all of us, now he move stiffly and tires within a mile. He has the Parkinsons's 'mask' - the rigidity means his face has lost its expression. Tremors make eating difficult for him.

He is losing his dignity and his independence and my mum has to support him as best she can and watch it happen. He has no cognitive deterioration at all, knows exactly what is going on and somehow that makes it worse. He could live like this for years, just getting worse and worse. Cancer would have been better, at least there would have been an end in sight.

They are going to have to leave the home they have lived in for 42 years.

And all this is in an area where support services are exemplary, my parents could not wish for better.

Nobody deserves this, it has to be one of the most shit diseases you can get.

Thanks for listening.

Pointy - its a bastard. My mum had it. The mask, the tremors, it made her so frail. She couldn't do the things she loved. She was once given drugs that made her hallucinate. She was scared to death practically before anyone fully realised what was happening. God awful.

There's no question about it, no one deserves this and you are def NOT BU.

My Dad has it. He was a composer and musician and can't even turn on the CD player now.

It is dreadful and appalling to watch the sufferer decline.

Get all the support you can, from everyone you can, because it is definitely needed.

OP YANBU

My gf was diagnosed 21 years ago, its horrible to watch the decline and his dogged determination to beat it. It's winning :(

My Dad also has it. But my Mum gets lots of help from the primary care trust who has done an assessment which means he is able to have carers in their home. They have someone every night so my Mum gets a proper sleep which means more energetic to face the day ahead. Also additional care during the day so that she can get out to shops etc. On top of that he is able to go into respite care for a week or so which he claims to not enjoy but does really! Hopefully you can see if something like this is available in your area. Also the district nurse from their GP surgery can provide other aids for around house. Maybe a third party offering a chair to help him stand will be accepted more than from a family member. I know this often is the way we get my Dad to accept new things.

My mother too. Not as far advanced yet; but every time I see her it is worse

It is a cruel, cruel disease. My dad has this and it is heart-breaking. He has deteriorated drastically in the past year and now he can't talk or walk. Before he got bad, he said that he rather not live this way, he is such a good man, always thinking of others and has helped so many people over the years.
I just pray for his sake that he does not live in this state for much longer.

Trees and herladyship - my parents live in the Netherlands and they are getting fantastic support. There is a massive Parkinsons cluster where they live, past statistical significance and into the realms of 'this is real, let's do research to find out why'. Best theory right now is toxins from the plant nurseries in the ground water, the area is well known for them and the growers do use a lot of pesticides.

The upside is that because there are so many cases, the services are there too. My dad has OT support (but is still not very good at accepting it ), has two different types of physio and a weekly exercise class specifically for Parkinsons sufferers. They have a specialist nurse on 24 hour call too, and access to advice on the legalities (like driving - he is at present still certified to do so but for how long...).

I do also think that he is suffering from depression - it runs in the family and Parkinsons sufferers are prone to it too, so double whammy. He is just so bad at asking for help after a lifetime of being healthy as a horse, guess it will take him a while longer to realise that there are things he can do to improve his quality of life if only he will take them... Sometimes I want to shake him, but I also understand how he feels.

Celia I don't think they'll ever consider sleeping apart, and besides my dad finds it extremely difficult to turn over at night because of the stiffness - this despite adaptations to their bed. So he'd still end up calling for my mum to help him turn over.

Thank you all so much for your messages of support, having a rant has really made me feel better.

I sympathize with you. My mum has Dementia (now in a home) and my father is paralyzed after a stroke 10 years ago. There is a cluster of Parkinsons and Dementia in our family. My uncles either have Parkinsons, or Alzheimers, my mum is on a sliding scale between the two with Levy body dementia.

Over the last few years, I have had tremendous support here on mumsnet, as I have vented and cried in frustration.

I read this thread last night and I couldnt post as I was crying too much. My dad has parkinsons, but he seems in a stronger place than many of your loved ones. He has been diagnosed almost 2 years, it was just heartbreaking to be told what he thought was a trapped nerve was far worse.

It is still trial and error with his drugs, he still runs the family business, but on a lower scale, stil drives and maintains a good social life, thier group of friends have been fantastic, and kept him going in spirit. My mum has him under her feet a lot more. The diagnosis was a shock to us all, but a wake up call that he needed to slow down.

I total fear what may happen. I fear for my mum and my siblings, I most of all fear for my proud, brave, amazing dad.

I know just what you mean, step Dad has MS, has done for the past 10 years, he's 67, it sucks everything that he enjoys about life away slowly, he's finding it hard to even get ouf of bed these days, Mum is his carer and helps him with everything, he tries his best, he's loosing his grip on both hands. It's shit.

my MIL has it. She can cope just about but it's very hard. And her husband has mesothelioma so she has to care for him. And they live bloody MILES away so we don't get to go and visit very often. It sucks. Am very worried about what will happen when she's on her own and getting worse.

YANBU.

My mam had it and it was horrible. She also suffered from the hallucinations, and paranoia, due to medication.

It's tragic that she was suffering from it from before my kids were born so they never had the chance to know her when she was well, and that she never got to do the kind of things that she'd always dreamed of being able to do when she finally had grandchildren.

A previous poster mentioned problems moving in bed with Parkinsons. My parents ended up getting satin sheets as that made things easier for my mam, don't know if that would help in your parents' case.

Pointy, im so sorry you and your family are going through this. I cant give you any magic hope, my fathers situation with parkinsons and lewy body was ended by him .
it is a sad cruel disease and is probably just as hard if not harder for your mum too.
My thought are with you all
Xx

Muddling that was me - they have tried satin sheets but my dad has night sweating as a symptom and it just doesn't wick as well as cotton.

At least he has no hallucinations, but the meds don't seem to be doing anything. Of course they probably are in terms of slowing the decline, but I just wish he could have a little while of being stable so that he could come to terms with it, instead of constantly getting worse and getting hit with new symptoms every time he starts getting his head around something.

Pointy

Ah, I see. Shame they don't help.

My mam suffered from the hallucinations and paranoia twice I think, each time was when she had a change to her medications and once they were changed from that she was okay. At least if your dad does start suffering from those you'll know it's most likely due to the medication and will be able to get it adjusted quickly.

Muddling part of me sometimes thinks hallucinations etc. would be better than nothing, at least the meds woudl be doing something!

I think the sleep disturbances are probably the worst thing in terms of my parents' relationship, I remember being sleep deprived when the DDs were little, esp. when they were ill and there's a reason why it's used as a form of torture. I think the rest of it would be so much easier to bear it only they could both just get a decent night's sleep!

My mam had to go into hospital at one point because she was seriously underweight and, to be honest, it was very necessary respite for my dad due to the sleep deprivation he was suffering, so I totally know what you mean. :(

At least my parents are still eating, my mum is a fabulous cook and my dad does enjoy his food still...

My mum is very healthy for someone almost 71, she had knee surgery a few years ago which sorted her out and has mild osteoarthritis (runs in the family, I've had it too, since age 17!) but it's all doable from her point of view.

I just hate seeing them turn into carer and cared-for, they were always equals in everything, both worked, both very highly educated. They're trying, my dad still plays chess competitively - but he can't go to club nights or competitions by himself because by the end he is so tired he is not safe to drive so my mum goes with him and does the drive him. I know the chess is brilliant for him in terms of warding off dementia, but that used to be time my mum could do her own thing (like eat fish fo dinner, which he hates) and so she's lost that.

I wish I could stop being angry and sad.

It is truly awful. My mum's partner has it and so does my uncle. My mum's partner is deteriorating so fast, it is so awful for them both.

Pointy (and others) So sad to hear your stories. My lovely granddad had it before he died and it broke my heart to see him decline as he did.

I have nothing to say that will help only that my thoughts and sympathies are with you x

My Mum was diagnosed on Monday. I looked at various websites which made me feel more positive than your experiences have.

YANBU, it is horrible. It's so sad to read all these stories, the thought of any of my relatives being in that position scares the shit out of me. OP, I hope you find the support you need.

I would like to ask everyone to consider donating to the Parkinson's brain bank, I know it sounds a bit gory but it could really help find a way to cure it.

We donated my fathers brain, they needed to do special tests for the PM but after that we agreed for it to be used for research.
We knew its what he would have wanted.

Pointy you have every right to feel angry, it's a natural response.

I have just spent the last two weeks helping a very vulnerable man of 64 yrs. He was diagnosed just 7 years ago but he is already suffering mid term symptoms including off periods, paranoid episodes with hulicinations. The drugs have some worrying side effects such as causing impulsive behaviour, in this man's case paying for prostitutes.

Two weeks ago he was picked up by the police for the 2nd time in two years. He was trying to rob a bank! because he is virtually bankrupt. He ended up in a psych unit. It is so sad. I have tried so many times to get a propper social work assessment for him. He has no family and he has fallen out with all his carers (making accusations) because of his mental health problems. The hospital allowed him home with no care, no named social worker and packets of the very drugs he is taking too many of. He over medicates.

Sending hugs, stay strong.

pointythings, your Dad could be my Dad. What help have you been able to give your parents? I only ask as I feel so helpless. We live an hour away from them and I've got 2 boys in school (will be full-time in Sept) plus I work from home, so I can juggle hours a bit if I need to. We have Dad to stay once a year so that mum can go on holiday for a week, but it's not ideal as we don't have a big house and my boys are too noisy for him when they get home after school.

Now Dad seems to be getting dementia, he makes up things about mum having a man in the house and plotting behind his back. Meanwhile she does all the housework, driving, gardening, paperwork etc etc. He refused to hold a bag for mum to tip the lawn cuttings in last week even though he could get up, he said he was retired and shouldn't have to do that sort of thing!

My mum cannot cope anymore and she said today she would be better off without him. It is a cruel, nasty, debilitating disease. And I don't know what to do to make it better.