86 year old dad has Parkinson’s

[Caterpillar41]

Hi I just wanted to hear some ‘light at the end of the tunnel’ stories. My Dad has just been diagnosed with Parkinson’s which the consultant thinks he has had for a bit. We all feel guilty that we didn’t consider he had it sooner and we put his mobility issues down to his arthritic knees and spinal stenosis. The last month has been really bad - he has been freezing resulting in falls and his mobility is awful. He has no tremor but slightly slurred speech.

He has been given one tablet a day with a gradual built up to three. He has been on them a week but feels worse than ever. The occupational health team came today and the house is being adapted. I feel so sorry for my poor mum who is doing everything for him at the moment ( she is 82). Both my husband and I work full time but we help when we can. We are a close family.

She doesn’t want him to have a carer yet.

Is there any hope at all that the meds will improve his mobility? I can believe how rapid the decline has been- 6 months ago he was going shopping with my mum and now he can barely move.
It’s all just so heartbreaking and he is quite down.
Has anyone been in a similar situation? X

My dad was diagnosed with PD when he was 69 but was told at the time that as a disease it’s typically very slow moving. He’s now 80 and has significant mobility and freezing issues (as well as some speech issues) but on the whole he’s just gone with it and adapted his life around it. Drugs made a big difference initially and definitely made him feel much better. He’s on madopar and they want to try him on something new (to help with the freezing) but they’re just waiting for him to fully recover from a hip replacement first.

In short, it’s not a nice disease but there are good drugs and adaptations to be made - a stair lift, grab rails and raised toilet seats will also help. My dad also got his taps adapted into push levers rather than screw tops.

Hopefully your dad will get access to both physio and speech therapy (speech therapy helped my dad loads!). Parkinson’s can also cause issues with low mood so if he struggles with that, defo get quick access to anti depressants. I think the anti depressants are what keeps my dad in a mostly even state of mind.

Mum has PD - diagnosed at 70 and she’s now nearly 80. She’s had bad times and better times and it seems to hinge on how well her tablets are working. Even a small adjustment to her meds can make a huge difference. Her mobility had got worse, and we discovered that Dad wasn’t allowing her to do very much so we’ve been working on her staying active and not allowing him to do everything. She has started a yoga class and that’s really helped.

My mum was diagnosed a couple of years ago after going to her GP repeatedly who said she had anxiety despite her very obvious symptoms. She’s 81 and manages pretty well on her current drug regime but she has had to change her lifestyle quite a lot. She can’t drive any more and one of her tablets interacts badly with alcohol so she’s had to give up her occasional glass of red wine.

It took a while to get mum’s drugs right, not helped by her original consultant not telling her what she should be taking and when. Fortunately she had a subsequent appointment with the Parkinson’s specialist nurse who has been amazing.

As @2lsinllama says, it’s important to retain as much mobility as possible, mum goes out for a walk most days and still does her gardening and light housework.

If you want to find out more about what to expect, I can recommend Terry Rummins books which are available on Amazon.

Thanks all- it’s interesting that you’ve mentioned keeping moving as he currently spends most of the time on the sofa. It’s as if he can barely walk at all. How long did the meds take to work for your parents? Sorry I’ve not figured out how to reply to individuals on here!! X

That’s not going to do him any good at all if he’s just sat down all day. My dad did similar when he was diagnosed with COPD, his health deteriorated rapidly to the point where he needed oxygen 24/7 far sooner than he should have done. Even if your dad only gets up for a couple of minutes every hour, it’s better than nothing.

Attitude also helps, mum is determined to stay as independent as she can for as long as she can.

Her medication won’t make her better but it has slowed the disease progression. She still shakes quite badly and her walking is a little unsteady but she is sleeping better and isn’t having awful nightmares any more. I think it took a couple of months to get things in the right order.

My very basic understanding is there are drugs to almost get the brain functioning in the morning, then another drug to switch it off a little a night. If mum goes out for the day, then she takes extra meds to cope.

We go to a Parkinson’s support group which is helpful in some ways, but difficult in others when you see people whose illness is more progressed than mum’s.

If he’s got the contact details for the specialist neuroscience nurse for Parkinson’s, I’d strongly suggest he rings her.

It took a few months for my dad to properly feel the effects of the drugs but once they kicked in, he felt so much better. He started using a wheeler to get round the house and he got one with a tray so he could transport things and make himself lunch/get drinks etc. These days even though his mobility is decreased, he still walks up and down the long walkway 3-4 times a day just to keep himself moving. And yep, your dad defo needs to be up and moving - a wheeler might help him too if he’s feeling unsteady.

It’s a case of move it or lose it with mobility really towards the end we stopped hassling dad to get up and walk and he started to sleep in the afternoon etc - you’ll find the balance and adapt but being 100% honest I wouldn’t set your heart on the medication making a massive difference

my Dad is 86 and was diagnosed approx 3/4 years ago. To be fair he’s doing pretty well. He plays golf a few times and week and being active is key to helping him. He’s been very lucky with the support via physio & speech and language. I would urge you to push for these for your Dad. They’ve made a massive difference.
we do find if he is ill with a cold or something it knocks his meds off and he struggles a bit more. He does fall occasionally unfortunately which he gets frustrated with. I’ve seen a bit of an advance in his symptoms the last month or so but hopefully this will settle.
Definitely access as much support as you can for your dad & the rest of the family who will be looking after him. My mum has really struggled with the load so we are helping her as much as possible with that…the Parkinson’s clinic will be able to offer your mum support too.

I'm sorry to read what your dad is going through. I am worried my 87 year old dad is showing signs of Parkinsons too but has not mentioned any worries to me himself. He walks quite a lot around our village and I sometimes pass him on my way to work. I've noticed he has a typical ' textbook' Parkinsons walk, he is stooped, his arms are rigid by his side etc. Also slurring words very slightly and this week has pulled a muscle in his back just bending down. This of course could be nothing but could also be related ? It's really hard to broach my worries with him as he has expressed no concerns about his health at all. I guess I'm just mindful that if it is early Parkinsons he should get medication etc asap ? My brother is visiting this weekend for the first time in a while so going to see what he thinks.

My grandad was diagnosed when he was 72 and it got bad very quickly so my parents let him move in, once the medication started working his tremors did get less but he did keep spilling hot drinks and food so needed help as time went on, eventually got to where he couldn't dress and the hardest thing was keeping him moving around but that also got to the point where even the physios that visited couldn't do more than leg exercises so he got a lot of blood clots in his legs etc..He made it to 81 and passed this year after he got pemonia and the one thing he would have been over the moon about it was the first and only time he had ever spent a night in hospital in his whole life the night they took him for treatment but he passed

My Mum was diagnosed at 69, weeks after being recommended intense chemo to zap any cancerous lymph nodes by an enthusiastic consultant at the Royal Marsden; on a private note the GP said it 'probably' caused her Parkys.

She died aged 84, the last few years of her life non-speaking and in various care homes but very much 'on it' we took her to see the last Bond film at the time and she enjoyed it.

So how individuals react to the drugs is very variable and some of it depends on whether the agonists work or drive them mad with hallucinations and so on.

Also, do from time to time check they really do have Parkinson's, it's an annoyance that I do wonder if the drugs didn't bring it on more, or whether Mum had something like 'restless arm syndrome' or something.

Most important advice - ffs get your dad to grant you and his other sons and daughters and wife Lasting Power of Attorney in Health and Welfare while you still can. You cannot get it when he is deemed to have lost mental capacity and the bar is set low for that - and in any case, if he is out of it in temporarily in hospital, that amounts to the same thing anyway. Without LPA in Health and Welfare, you will not be the decision maker for his care, the State is - and the State profits from your parent's death, to put it brutally and bluntly.

Maybe get a bone scan test, if they are weak a fall can lead to a breakage. Powder laxatives because constipation is an issue. Use a Zimmer with wheels to go up the road - I used to tug my mother along the road, she was very much up for it, but a row with my Dad made me go non contact and that was it really, no one else did that with her... This was some years after diagnosis. Make sure he gets proper hydration, oh and the piss pot or commode by his bed for nights - an empty beetroot jar is good, it's the fall that gets you.

Be sparing about calling the ambulance out - my Dad did it when really he just needed to get her up off the floor, after a couple of times your card will be marked and they will keep your parent in hospital to manoeuvre for them to go into a home, to get you on the conveyer belt... That's about £2K a week.

We got Mum out to Paris for the first time twice after her diagnosis, she went on the Eurostar, once the drugs settle there is lots of stuff to enjoy. I may post a few photos later on...