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.

My dad too has this awful awful disaese, he was diagnosed 15 years ago just as he retired at the age of 65 when him and mum had so much planned. Luckily for the first couple of years they were able to live some of their dreams but now my dad is housebound unless I take him out. My dads passion was fishing and for a while we took him but now he cant even hold the rod as his shaking and grip is so bad.

I would urge your dad to reconsider the rise and recline chair, they are brilliant, my dad would not be able to move without it and on very bad nights he even reclines it fully and sleeps in it as he finds that easier than us trying to get him into bed (he now has an electric powered hospital bed in a different room to my mum). He has someone to come in everyday to shower him and apart from being able to just about make it into the bathroom most days he is confined to his chair/wheelchair/electric scooter. Just about the only thing my dad can still do is feed himself (once food is cut up) as just about everything else he needs help with.

YANBU I hate it too, my mum has it along with ulcerative colitus (which has lead to a stoma), rhumatoid arthritis and a long list of others. Whilst on holiday this week, probably the last time they will go to the little flat in Weymoth that they have been to for the last 20 years due to the PD, she has developed a hernia to top it all off and ended up in hospital for 2 days. We have our eldest DCs in a boarding school, we move a lot due to DHs job often abroad, near to her so she could be their guardian whilst we are not there and she now gets so upset as she cannot go pick them up at weekends or look after them for too long without it making her worse. It is one of the worst diseases in the world and every time I see a collecting tin for it I empty my wallet. She is very active in the local support group and has also just taken up african drumming to help with the symptoms. We all know it will get worse but for now she is just plodding along and joking about jelly and her being similar :)

knighty My parents are Dutch and live in Holland, I live in the UK and so does my sis, so there is little we can do. Moving them here would be completely counterproductive as they would end up in at best patchy NHS systems, whereas they have the best of everything in terms of support at home. They wouldn't be eligible for NHS use anyway, being foreign, and their health insurance would not offer the same cover here as it does at home. Financially they want for nothing, are very well off and sis and I are encouraging them to get every gadget they need to help my Dad - as well as enjoying holidays while they can.

They are just back from 3 weeks in Canada which they have really enjoyed - my mum did all the driving and loved it, they now have a good idea of my dad's limitations and are planning more, smaller trips over the next years to enjoy while they can. People were very nice and helpful, including Canadian locals, airport staff, cabin crew - there are still a lot of decent people around. My mum sounds happier than she has in months so sis and I are going to encourage them to take more short breaks so that they can be away from it all in the physical sense while it's still possible.

I guess I just have to hope that the disease progresses slowly and that my parents get the maximum joy out of life that they can.

I'm really grateful to all of you who have posted, I don't feel alone with it anymore.

(deep breath) well, I've got Parkinson's and have been dx for almost 4 years. I'm 41. YANBU but....it could be worse...I'm still working, I had another baby, I know who my friends are, the NHS support is pRetty good, ESP. the parkinsons nurse.we are planning to enjoy life.

Feel free to shoot me down but i think it's almost worse for the family. Your posts are a testament to that. I spend my time working out solutions to the practical difficulties i have. I try not to think about the future. The drugs are ace. My family and friends do the worrying. I may sound flippant but to be Frank, you have to be. It's not ideal but i don't feel like it's a tragedy. My family might disagree. Do I hate PD, oh yes, but there are other things that happen to people i hate more.

YA definitely NBU! My DH's dad had it (was diagnosed in his late 30s when DH was 4 but died when DH was in his mid-20s) and was cared for by DH's mum and it hit the whole family really badly - DH & brothers even got teased at school because of his dad's speech :-(. Hang on in there - glad he's got such a caring daughter!

moominthecorner - just wanted to say that I also had a great, great uncle who had Parkinson's dx quite early in middle age (IYKWIM) and it progressed VERY slowly for him - he died at a good old age and died WITH Parkinson's rather than OF it (or any of its complications). I really hope your case turns out similarly (I sometimes wonder if the uncertainty of things like PD and MS and their progression is the most difficult thing to deal with - fear of the unknown being worse than the reality and all that). And I think you're right - many chronic/degenerative/terminal diseases are worse for the family - my dad had cancer and I kind of had to keep checking that he realised how serious it was as he carried on with life in what seemed to be a brave effort - he swore he knew perfectly well how bad things could be, but he took his treatment, lived as healthily as he could, had a good specialist and decided he was going to enjoy life as much as he could regardless, while the rest of us were wrecks - delighted to say he is in remission thus far.

Silver6 - i can agree, i've cared for people with PD (having surgery) who've had very slowly progressing PD for years - so to them it's not so bad.
Pointy - any change in dose of neuro meds for eg. PD or epilepsy (which i have) can take weeks to take effect. Any new side effects take weeks to wear off too. (Frustrating!)
Talk to a pharmacist to check your dad is taking his meds correctly. I did that & was shocked to hear what makes a difference.
Eg: not to have hot drinks, fruit, milk, alcohol, fizzy / fruit drinks or hot food at least half hour to an hour of meds. So now i have plain biscuits & water before my pills.
Also he MUST take them dead on time & persevere with this. Your dad can keep a simple daily record of when meds taken, side effects noted, & any PD symptoms. This will help the PD team.
Your mum needs to socialise at least once a week - you or a carer can stay with your dad. Also try to think of ways to make him feel needed (eg boost his ego).
Your mum musn't let him get away with anything just because he's ill btw. If she wants to cook fish it's her house too!
My aunt has learnt how to deal with my (alpha male) PD uncle - it took a while but now she's more independent, he accepts physio & OT assistance, & their relationship is actually better.

Also, anyone with a chronic disease / disability needs to be needed.
My PD uncle still has ex-employees asking for his help & advice.
My cousins don't treat him any differently either.
They just need to be patient when his speech is bad.
My uncle also collects his fave music & comedy DVDs for down days.

pointy I am so sorry. My Dad was diagnosed with Parkinson's about 6 years ago. He must have had it for longer than that though, as he had been suffering from stiff shoulders and a slight quiver in his left hand for about 2-3 years leading up to the diagnosis. We think my mother's death may have triggered it.

He has a hard time doing simple things like putting clothes/shoes on and taking them off, walking, eating....It is extremely heartbreaking. Sometimes he forgets things I have told him a few hours earlier and also has scary hallucinations during the night like people creeping out of his wardrobe or touching his feet in bed due to his medication.

He still likes to have an active lifestyle (limited as it is), and spends 6 months living abroad with my brother or sister, and then around 6 months with me. I think he likes to keep himself busy as possible and still likes to cook and taking strolls in the park. I have become very protective of him and don't like him going anywhere far by himself, so drive him everywhere. I am his carer when he is over here, so can sympathise with your Mum.

I agree with what some of the posters have written about tweaking the medication. My Dad was started off on a high dose of sinemet, which gave him sore gums - they then limited the dosage and added 2 other tablets. It was alot of trial and error over 4 years that gave him a dosage that began to control the symptoms better. At the moment, his hand tremors have all but disappeared - although other non-noticeable symptoms like indigestion, trouble swallowing and stiffness in the shoulders are still there.

My husband gained about 60 lbs. he ended up having PD-5 formula, which I know isn’t recommended in this group. It was his choice. He has lost 50 lbs since July . His high was 300. he also had terrible sleep patterns even before his dx.he now sleep all night with PD-5 formula from limitlesshealthcenter. Com well wishes

My Mum had PD.
It was dreadful watching her deteriorate.
Agree about the hallucinations (and I expect early dementia)- she was in a wonderful care home as her partner died of covid and I lived and worked 300 miles away.
I moved her near to me so I could see her often.
She was convinced her partner was still alive and was having an affair with one of the nurses.
She used to scream his name thinking he was hiding in the next room.
It was awful and I am eternally grateful to the staff for their kindness and support.
On a lighter note she was convinced my son had got married and had a son ( he was single) and remembered taking his son out- probably confused bless her but my son played along and agreed with her.
I miss her.

It's an awful disease. 4 years ago today, my younger sister died from it at just 54. It's her daughter's hen weekend this weekend and wedding next month.
I went with her daughter for wedding dress shopping, I am going on the hen weekend, I am with my niece for all the wedding morning prep.
But my sister should be here and this horrible disease took her too soon and at the end, she was a shell of the person she had been. I hate Parkinsons.

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