To hate, hate, hate Parkinsons's Disease?

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

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.

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.

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.

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 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.

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.

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

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.

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 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.

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 and I agree with you that it's cruel. There's a man that has looked after himself his whole life... fit, active, didn't smoke, hardly drinks, all the things you're supposed to do. Plus he had parents that were still going strong in their nineties so genetically the odds were in his favour. And then this appears out of nowhere with zero warning - totally indiscriminate. Unlike you, however, I'm furious with the lack of care being shown by the NHS in his case. They seem to forget he exists from time to time.

My mum has it too. With dementia. Horrible horrible disease.

YANBU. its awful. my mum has it too. my dad is her carer. i wish i could go home and help (they live in aus) but I have a 7 year old step son and we cant leave because of him. i would have left ages ago- to give dad a break and so that mum and dad can see their grandchildren.

It is truly a dreadful disease - I find it hard to think of anything worse.

A relative of mine was an Oxbridge physics professor, and ended up a trembling shell. It was one of the saddest things I've ever seen.

YANBU. My mum has this horrible disease too. She has a lot of difficulty moving. She can't visit my home any more as we have a step at the front door and no downstairs toilet (the last time she tried to visit us, last summer, her leg seized up and she couldn't make it over the threshold.) Lately she has been confined upstairs in her home as she can't safely get downstairs, and they are investigating getting a stairlift but are not sure if it's feasible.

She loves playing bridge but had to give up going to the bridge club because she couldn't physically keep up with holding/moving the cards (despite having a card-holder). She also writes poetry, and fortunately can still do that - she has had poems published and won competitions.

YANBU. My fave Uncle has it. His mobility has been affected so he's had to give up his job, and has moved to a bungalow with my aunt.
The worst thing is his speech - for a loud funny man to become almost mute is a nightmare.
Luckily he is getting the best care from the local Parkinson's team.
His cocktail of meds is constantly being updated.
He attends physio and group speech therapy classes - and is actually getting good results.
My uncle is 63 and has always hated admitting to weakness.
He resisted group therapy at first, and refused to eat even with family.
But he forced himself to attend the groups, and met men like himself.
He has now accepted the illness and with all our support he is far more motivated to fight to remain stable.
He practices (sp?) his speech exercises daily and has taken up birdwatching - which is a hobby my aunt does with him.
OP - i recommend having a serious talk with your dad.
Tell him he needs to accept the diagnosis.
Then to have the therapy, special equipment (inc. The armchair!) and meds he needs.
Tell him that it is unfair on you and your mum if he gives in, so he has to man up and face things.
Make him regularly feel important and needed by asking for his opinions / advice.
His self-esteem and confidence will have been eroded by his loss of independence, leading to the lack of motivation to carry on with therapy.
It will all be very hard for him and you, but don't forget - the medications are improving all the time.
Do remind him of this, good luck.

Pointythings, you mentioned that your mum's nights are disturbed because of your dad's sleep problems. Well, this may sound awful but my mum and dad have separate bedrooms now, for that very reason. It means my mum gets a decent night's sleep and my dad doesn't need to feel stressed about keeping her awake. Maybe worth mentioning the idea to them, any little thing that makes life more comfortable for them has to be worth a go.

Oh and YES to the Parkinson's Society. Through them my Mum & dad have been to relaxation classes, they have a good support network and my Mum has been to art classes.

The art classes have renewed her love of painting - she has even sold things in exhibitions

(hug) It is rotten, I'm so sorry. My grandfather had it; he had been a history professor, but by the time I was ten or so he was hardly able to speak. He'd watched his own father go through it as well. I dread the possibility that my dad will be next; my memories of Grandpa's last years make me cry and that's without having even known 'well Grandpa' properly myself.

Dad always says if he gets it he will 'take a long walk off a short pier' while still able to do so. Kind of have to agree.

pointythings I understand. My Mum too has Parkinson's. Her great love in life has been food - tasting things and cooking and entertaining. One of the early thing to go was her sense of smell and taste, and now she is unable to do anything practical in the kitchen. My dad (in his mid 80's) has become her full time carer and after 55 years has had to learn to cook! The most difficult thing for me at the moment is that my Mum is becoming confused, and she knows that it is happening. It distresses her a lot becuase she is aware of her mental deterioration. I am torn between wishing it was slower (so she could adjust) or faster (so she wasn't as aware that it was happening).

But through all of that, my Mum and Dad face each day with amazing courage and resiliance. They laugh at my dad's cooking attempts, they problem solve on a moment-by-moment basis, they make adjustments to how they wash, dress, cook, clean. They are proud of their independence.

Yes it's shit. I hate it. Tonight I cried because they were telling me that it took 90 minutes for my Mum to crawl from the kitchen to her chair.

My dad also has this,he was quite young when he was diagnosed,50 or a bit earlier,I'm not sure how long he'd known when he told me.It has been hideous,my lovely funny chatty dad with the truly brilliant brain,hallucinating and having terrible nightmares,he can't talk at all well and its very difficult to understand him,which as he's also rather deaf is totally isolating for him.My mum is barely coping,she is nearly 80 and he is nearly 76.He can still walk a bit but often crawls about,it is deeply distressing,I feel for you,really.

I'm so sorry. Make sure you contact the Parkinsons Society, especially local support groups. They can be a great help to the whole family.