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To hate, hate, hate Parkinsons's Disease?

(60 Posts)
pointythings Wed 08-Jun-11 21:52:33

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.

canyou Wed 08-Jun-11 22:04:50

Your Poor family, My Gran Uncle had this awful disease and it was awful to see him go down hill, he was also a very active man who was a carpenter and used to make us wooden toys.
TBH he went down hill very fast after diagnosis and he could never really accept it but when he began the physio and adapted his life by accepting help things got a better for him and his wife, we always included him in days out and have lovely pics of him in his wheelchair with the dc on his lap, he went to Lourdes and France and travelled a lot with family so things will be different but at the moment still doable so plse make the most of it and build lovely memories and take lots of photographs
Plse look into respite so as your Mum can get a break as well.

canyou Wed 08-Jun-11 22:07:08

And come on here to rant and vent and say what you really need to say but can't in real life.
And remember anger is a great source to challenge to get things done

BikeRunSki Wed 08-Jun-11 22:09:28

Pointy My dad was diagnosed when I was 12 and he was 50 and on my mum's 40th birthday. I grew up with PD, later Alzheimer's too. we moved too. Mum took on more and more jobs to pay for his nursing (and had 4 kids to look after). I could have written your post. Except dad was never sporty, but - get this - he loved model making, although he was mostly cultured/witty/well read/cerebral/sharp minded.

It is a truly shit disease, and as you say, so long term. Dad degenerated for 12 years before he died - he just got weaker and weaker until his immune system was no good and he got pneumonia he could not fight. I am not sure if it was better when the intellectual degeneration started. Maybe, at least he did n't know what was going on any more. Hard for everyone else though. Dad's brain was what he was about.

I am 40 now, and still a bit angry that he didn't see his kids graduate, get married, have their own children. Actually scrap that, I am angry that he didn't see me do any of those things. I never knew him as an adult. My fantasy dinner party guest would be "Well Dad" circa 1975, and me now.

You have all my support and sympathy, and un MNy hugs. I live in fear of it being hereditary.

CeliaDeBohun Wed 08-Jun-11 22:09:43

YANBU

My dad has it too. He was only in his mid 50s when he was diagnosed. He's 61 now. It's so cruel - these are the years when he and my mum should be getting to travel and have loads of fun together after decades of putting their kids first and making all kinds of sacrifices for us. I won't go on, but can relate to so much of what you've said. So sorry that your dad is going through this, it's fucking horrible sad

smartyparts Wed 08-Jun-11 22:14:02

YANBU - my lovely aunt had it and it was a cruel and awful decline.

Trees111 Wed 08-Jun-11 22:39:18

I'm so sorry to hear about your dad. I may have some advice that could help, but he may have already accessed these services.
I'm an Occupational Therapist (OT) who works for a local authority (Social Services) and I visit people like your dad in their own home to assess, make recommendations and service provisions to maximise their independence and safety. If he's not already had an assessment make a referral to his local Social Services for an OT assessment. They will check his transfers and make sure he can move around his home more independently.
Also make sure he's seen a specialist Parkinsons doctor at his hospital - depending on where he lives he may have to travel to one of the larger hospitals. The key with Parkinsons is symptom management and getting the medication right. This will need constant review and adjustment as his needs change. So ask for a new referral if he's not been reviewed recently.
Lastly there are many support groups for both your dad and his carers (your mum and you). Ask his Parkinsons nurse, or use google to find local groups. The Parkinsons disease association is one of the main ones.
http://www.parkinsons.org.uk/
Wishing you all well, Trees.

maybells Wed 08-Jun-11 22:57:12

my nan lived with it for 16 years she passed away wen i was 8 so never knew her when she wasnt ill. such a strong women reduced 2 a small frail old lady. its only wot i can remember of her. such a cruel disease. sending my love x

CeliaDeBohun Wed 08-Jun-11 22:59:39

The key with Parkinsons is symptom management and getting the medication right. This will need constant review and adjustment as his needs change.

Oh yes, this is really important - my dad's meds get tweaked all the time, especially if there's been a sudden deterioration in his condition. He usually sees a difference within hours (although it is only holding the symptoms at bay). If your dad does feel that he's going downhill rapidly, he should demand that his doctors review his medication asap.

herladyship Wed 08-Jun-11 23:01:38

YANBU sad

I am an occupational therapist as well, i second the advice about finding a support group. Also people with parkinson's disease are at a high risk of falls, so an OT assessment at home could reduce some of the risk factors.

catkin83 Wed 08-Jun-11 23:02:16

pointy things - I really feel for you.
My Dad has a similar neurological disease and was diagnosed when I was 18 and has been deteriorating ever since. My Mum is in a similar position to yours.
It's a terrible grieving process watching their lives get so hard and seeing the horrible changes.
Keep posting, it's really good to get it out I think.
All I can say is that over the years I have never accepted my Dad's disease but the anger and fear has got easier to deal with. Look after yourself as well because it's important to keep your life going and your parents will get strength from that. xxx

LyingWitchInTheWardrobe Wed 08-Jun-11 23:02:57

Very sorry, OP. I sometimes think the debilitating, person-stripping diseases are so much worse than others. sad

I remember reading about Parkinson's disease when Michael J Fox was diagnoses and thinking how appalling and how very cruel. I feel desperately sorry for anybody suffering from it.

GreenEyesandHam Wed 08-Jun-11 23:06:06

No pointythings. You are not being unreasonable

working9while5 Wed 08-Jun-11 23:08:21

My grandfather also had this disease. I am really sorry for you and what you are going through.

crystalglasses Wed 08-Jun-11 23:11:24

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.

hellymelly Wed 08-Jun-11 23:18:48

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.

venusandmars Wed 08-Jun-11 23:24:35

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. sad

DirtyMartini Wed 08-Jun-11 23:28:59

(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.

venusandmars Wed 08-Jun-11 23:29:02

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 grin

CeliaDeBohun Wed 08-Jun-11 23:30:18

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.

Kallista Thu 09-Jun-11 00:18:56

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.

melpomene Thu 09-Jun-11 00:32:25

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.

ninedragons Thu 09-Jun-11 01:41:02

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.

lateatwork Thu 09-Jun-11 07:43:14

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.

Buda Thu 09-Jun-11 07:53:12

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

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