Dad with Parkinson's - only 67 but declining and won't do physio/exercise

[BlueRaspberry7]

My dad (67 - diagnosed with PD about 5 years ago) lives with his wife around 2 hours away from me.

He is on various PD medications and has tremors and also makes a gyrating sort of movement much of the time. Speech is a bit weak. He finds many everyday tasks difficult eg. Cutting food, holding conversation, and is recently prone to tripping. Struggles with household tasks and is forgetful/confused. He also has some sight issues. He no longer drives for all these reasons. Yet he seems to be in denial. He and his wife went on a skiing trip recently (I couldn't believe they did this) and after one bad day on the flipped he decided to go back and try again. Unsurprisingly he had an accident - needed stitches around the eye - and I think this has set his confidence back further still.

He has lost a lot of weight and muscle over the last couple of years- all has been investigated. He also had a shoulder implant operation a few years ago which causes him pain.

He was seeing a physio regularly for a while, and is meant to be doing daily exercises. His wife tells me he doesn't do them except when I go up to visit, when he puts on a show for me apparently.

I suggested a physio should be going to the house to see him if they can afford it (they can). He was resistant to this idea. His wife is struggling and becoming despondent that he has given up.

I'm not sure what else to suggest. Is there any at-home motivating type help for those with conditions like Parkinson's that don't quite fall in the needing proper care bracket yet? Like a coach/P.T./ motivator?

Any experience from those with parents at this stage would be great. Thanks for reading

@WhatHaveIFound that's so sad, it's how my mum feels too, she's given up, she just wants it to be over :-(

How awful for you @WhatHaveIFound, I can only imagine how upsetting that must have been.

Parkinson's is all a bit new to us. DF was misdiagnosed with it a few years ago but it was definitely a misdiagnosis and now DBIL has been diagnosed at 52.

It's a terrible disease. Is there a local branch of Parkinson's UK in your area? They are a source of useful information and have meetups and meals out etc.

They are also doing a lot of important research into the condition. I have arranged for my brain to be donated to their Brain Bank when I die. I don't have Parkinson's but they need a supply of "healthy" brains to compare with those with the disease.

www.parkinsons.org.uk/research/parkinsons-uk-brain-bank

Have you looked into PD warrior? Local classes should exist but would he be willing to try them on you tube?

Hi, just writing as we're recently in the same boat as FIL (70) was diagnosed last year. Ten years ago he was absolutely fine, but seemingly decided upon retiring that that was that and he would now be 'old'.
Not sure now if any of this was actually Parkinsons before we knew about it. Also in FIL'S case I think the enforced covid lockdown inactivity has made the apathy aspect worse, so any helpful advice from those in the same boat is great!

Have been recommended Movers and Shakers podcast and it's rather good..

I’ve been where you are and I am sorry about your father.

He needs counselling to come to terms with his situation. My dad was good was very fit at diagnosis - life long sports player. But I don’t think he did the exercises enough. I don’t think he came to terms with the diagnosis and just kept going as normal until he couldn’t. Then he became crotchety and bed ridden.

He needs to engage. This is likely to mean a good counsellor - maybe with trauma experience (as it’s a trauma and a shock to be diagnosed).

In my area of Scotland Parkinson’s patients are being encouraged to play table tennis - when I took DM to see the stroke nurse I saw posters about this in the hospital. The table tennis club in my village has joined this scheme, and it’s for all ages - from children to pensioners. Maybe something like that would suit him, if available in his area.

I went through similar with my Mum who had MS. It feels like having a child who you can’t tell what to do. It’s a long tough road. My suggestion is really one for you, see a counsellor and work on your own reaction and boundaries. It’s not the same at all but I found the 3cs of al anon useful.

Apathy can be a feature of PD I think? Is it something to do with them not getting Dopamine as a reward?

This is what I'm wondering now, as looking back it's quite a personality shift. My grandmother had PD and didn't have the apathy until really very late (she had it for years and year) but she had a VERY determined stubborn personality anyway and also this was before covid/lockdowns.
Have seen what a couple of posters have said about counselling, so may try to discretely ask MIL what she thinks about it as something to try when an opportunity arises. They're very much not the sort of people who go for that sort of thing, but if it helps it's worth an ask!

It's difficult if he's not motivated, for whatever reason. A medication review would be a good idea.

There is really good evidence for speech therapy for quiet voice (It's a specific programme called Lee Silverman Voice Treatment) but it's very intensive and in my area it's only available privately.

My Dad is in his early 80s with it, but is still willing to do his exercises and keep walking. He also does a lot of emailing and phoning, keeping up with far-flung friends. He does the gyrating and slight bobbing up and down, but no tremors as yet.

My stepmum tells me that his insistence on doing something on a particular day when it would have been more convenient to do it earlier in the week is also a symptom of PD - slightly obsessive behaviour.

I’m very grateful that he has her. He doesn’t need constant care but I can’t see how he’d manage on his own. He’s still able to holiday if it’s easy eg cruising - as he’s happy to stay on board if he’s too tired to go on an excursion.

I’m sorry to read that your Dad won’t do his exercises - very self-defeating. I suppose he wouldn’t respond well to some firm talking?

I have a relative who was diagnosed in their late 30s. Lots of medication now, definitely obvious signs.

They refuse to do physio, but do have lots of physical hobbies that help. The skiing holiday is probably not a bad thing. Keeping going, pushing limits seems to be really beneficial to my relative. They are a runner, likes to sail, walker, climber. These sports and having young children to care for help where physio is being ignored.

Is there anything you Dad enjoys? Tennis, football, table tennis, walking clubs, dancing. Anything that is NOT because he has PD but because he enjoys it may help to stimulate a bit of action and all exercise is good for PD from what I understand.

A friend told me he finds the groups upsetting, seeing people who are in a later stage and thinking how it may progress.

@pattimanners98 thanks for sharing this great news about your husband. We'll look into it this end.

I was diagnosed at 45, eight years ago now and I tried my my local groups but they were full of much older people who had a different outlook towards the condition than I do and I didn’t want to face the negativity. If he listens to podcasts he might find something he identifies with by listening to The Movers and Shakers podcast. He might hear something that peaks an interest.

You can't make him do the right thing.
You also don't have to be his carer and support.
You can say 'well I've told you what I think you should do and offered to help - you disagree, that's your right, I'll leave you to get on with it'

My Dad died a decade ago, but he was diagnosed with Parkinson’s relatively young, around 50. He did go to a group and felt good about it, he used to say that a lot of people were in wheelchairs and he felt lucky to still be mobile, so just a different attitude I suppose. Your Dad is clearly struggling with things, it’s a horrible disease and he is not very elderly. It’s common to have apathy and or depression along with Parks, as part of the disease, not an emotional response, so this might be coming into play with your dad, it’s rough. I wonder if he might benefit from a medication review ? There might be tweaks that could help. Other than that you are right that keeping muscle tone is really important, exercise outside is good for serotonin levels , even walking for half an hour every day would be really good for him.

This is of course nonsense. Reported.