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

Also sorry if this is the wrong talk topic given my dad's age - I thought people here most likely to have experience of parents with Parkinson's.

I should add that my dad and his wife moved 90 miles away from me by choice when he was in full health. Between my f/t work, 2 kids (one with autism, therapy appointments etc) and not having the best relationship with his wife, I'm not going up there as regularly as I should. I don't feel good about this at all, especially as he's declining. He isn't happy about this but understands, I think.

He would love to see more of me and my kids and I would love to see him more too. His wife is letting me know how hard she is finding it. I just don't know how to make it all work.

Sorry he's had this diagnosis, it's a horrible disease, I have recently lost my dad to it.
When he was at the stage you're describing he used to go regularly to a sort of parkinsons day clinic, where they did movement exercises, voice exercises , and it was a bit of a social too; I think they got a lunch. This was at a local small hospital run by the NHS parkinsons team. There was also a group run by the parkinsons charity but he didn't like that as much. Has he had access to anything like that?

Around here..in lreland there are exercise groups for those with Parkinsons. I wonder would he find exercising in a group easier even though its hard to have the energy. Also cannabis is supposed to be very effective and if he is up for going skiing he might be up for that!!

@FiftyNotNifty I'm very sorry for your loss.

Thanks for your suggestions.

My dad is unfortunately very resistant to anything like that. I think he looked into it and went along to a group a couple of years ago. He said he was the youngest there and found it very depressing. Such a shame as the movement and social support would be brilliant for him.

@junebirthdaygirl I'll look into it again and suggest it, but imagine he'll say no. He's in quite a rural location and doesn't drive so would be dependent on his wife to get there - which he wouldn't like!

He did try cannabis oils for a little while - maybe it's time to revisit them...

A relative has found cannabis oil amazing for Parkinsons.

Does he have a wheeler ? Once my dad started using one he was more confident on his feet and used to go for a spin around the small estate they lived on , eventually though he just didn’t want to do it and slept more and while we pushed him for a while eventually the doctors made us realise it was just part of progression.

Your dad sounds way off that stage if he’d been well enough to fly etc so the key really is to push / encourage him to be active even if it just to go out in the car for a drive. The less active he is the worse his ability to move will be so it really is a vicious circle

They have dogs and live in a beautiful rural area but his wife tells me she struggles to get him to join her for a walk more than once a week.

It's like a stubbornness - he's almost defiant about not doing any exercise - I wonder if there's a self sabotage aspect to it.

My dad was diagnosed with Parkinsons at the same age as your dad. He lived with it until his death at 86. So if your dad starts doing what he can to help himself he should have many more years ahead of him. Sunshine and warmth helped my dad a lot. We had a villa in Portugal at the time and he would spend months at a time there. He always perked up a lot whilst he was there,was much more active. Dont know if that's an option for your dad?

@CampervanKween I'm very sorry for your loss. Can I ask what else did your dad do to keep himself going? And did you use to join him at the Villa or did he go with another relative?

Do you know that apathy is a symptom of Parkinson's Disease? They just don't care

It likely isn't that he refuses to exercise or that he doesn't care, but that his Parkinson's won't let him.

Parkinsons doesn't just affect your mobility, it affects a lot of other functions of the brain as well. If he is sometimes getting confused then he has quite advanced Parkinsons.

It causes apathy - so he just can't initiate any activity or get motivated. Unfortunately some people with Parkinsons also develop dementia. Early signs of this would be being more forgetful and having hallucinations.

I am so sorry for you and your Dad, he is so young.

@BlueRaspberry7 My dad refused the social group for the same reasons, full of old sick people, depressing etc! But the day clinic thing was an "appointment" so I think he felt obliged to go (and my mum certainly dragged him as it gave her a few hours off!)
Does he have an allocated Parkinsons nurse?

Could I ask how cannabis oil has helped - what aspects has it helped with and how is it used? My MIL has Parkinson’s and I’m looking into anything that could help.

My dad 77 doesn't have Parkinson's, but he does have a spinal condition that affects his ability to walk and he was having frequent falls. He refused an operation and any physio treatment. My mum was able to get him to go on a daily walk. It was a chance conversation with another retired neighbour who told him to get referred to the physio at the Council Gym. Shock horror he's been going twice a week since the summer to do this physio programme at the gym using the machines. It's made a big difference to his strength and balance. Although he still stumbles he can mostly stop himself from falling and he can stand better. If he hadn't I think he was close to needing a wheelchair.

I think in his case it was pride and laziness getting in the way of seeking help. Does he have any friends or family who might be able to encourage him?

My mum had to buy him the clothing and trainers, otherwise he would have gone in his shirt and trousers. Don't give him an excuse to not attend.

My mum used to go with him to Portugal and we did too. He loved the kids so that definitely gave him an incentive to keep going. He was a very fit and active man before the Parkinsons and never drank or smoke so was in general good health. I think all that helped. My mum looked after him so well, kept him going, made sure he ate healthily. Would take him out every day and made sure he did a bit of walking every day. Usually to the Trafford Centre as warm and inside, or abroad in the same kind of place really.

@CampervanKween thanks for sharing. It sounds like your dad was a loved and loving man, with your mum supporting him. It's heartwarming to hear how he lived out his years with loved ones despite the condition.

My dad has never looked after his health and following the divorce from his first marriage early death of my brother, he never sought the right support. His marriage hasn't been the most emotionally supportive. It's a sad story. I feel very distant from him both geographically and in all ways. Need to think deeply about how things will look going forward.

Is he being seen regularly by his PD consultant? Or team, does he have a local PD nurse specialist.

It sounds as though his meds may need a review and like he would benefit from OT / Speech Therapy and PT referrals again.

Parkinsons UK have lots of useful information and you can search for groups in the local area. If there is a local hospice etc they often do day sessions that aren't condition specific if he doesn't want to be around other people with PD.

I'd avoid buying walking aids without support from a professional and it could cause more harm than good.

If his mood is low which often happens in PD even the GP may be able to help.

But if he's just not keen there's not really anything you can do apart from gently suggest / encourage.

Its a really difficult situation,

My dad is older than yours and has Parkinson's but he too dislikes groups etc as he says people treat him like he's stupid. His brain is absolutely fine, he's a big reader and can tell you anything about anything but sometimes people in the services talk to him like he's deaf, dim or has dementia (his words, not mine!).

In terms of self care...he registered with a private clinic in Manchester and was able to get cannabis. It worked a treat on the tremor but had other side effects he didn't like so he stopped. But it was really good for tremor control. If you Google medicinal cannabis you'll find the clinic (all perfectly legal and the clinic is run by doctors, costs around £60 per month for a prescription).

Speech! My dad did an intensive speech therapy course and it changed everything for him. But also being the proper level of medicated is really important. My dad is currently on Madopar (both pills and patches) and it's had a definite impact on speech and mobility.

Has your dad seen a specialist? We were told that keeping active at this stage is important. It builds up muscle strength and is good for the depression that often comes along too. Its understandable that as he's quite young, he'd be in denial but early intervention is going to make a big difference to his quality of life now. PD doesn't always follow the same path for everyone so he should take everything that's offered and enjoy quality of life now.

Nordic walking is very beneficial for people with Parkinson’s as it is rhythmic. There is a group near me specifically for Parkinson’s. Also exercise groups.
I think referral for an Occupational Therapy assessment would be a good idea, as they can suggest all sorts of hints and tips for coping at home. Also as a PP has suggested, Parkinson’s UK have lots of helpful information.

My grandma has Parkinson’s disease, she is about 75 years old it was detected 7 years ago. Right now it’s getting more difficult to live for her, because of stiff muscles she can’t even move. L-dopa and carbidopa medicines are given, but won"t give much relief. She can"t eat food and the skin is damaging forming ganglia. I thought this might be the last stage and the medications she was given did not help at all, so I started to do alot of research on natural treatments, I was introduced to Health Natural Centre and their Parkinson’s Herbal Protocol. She started on the Parkinson’s Treatment last year, her symptoms gradually diminished including her Tremors, Body Weakness and Muscle Pains. Reach them at healthnaturalcentre.org , She is getting active again since starting this treatment, she is able to walk again ( down the street and back ) and able to ride her treadmill again! God Bless all PD Caregivers. Stay Strong, take small moments throughout the day to thank yourself, to love your self, and pray to whatever faith, star, spiritual force you believe in and ask for strength. I can personally vouch for
these remedy but you would probably need to decide what works best for you.

So many helpful suggestions here, thank you very much everyone. Wishing you all the best with your own parents

Sending love to you and your dad. It's tough, make sure you look after yourself and your own mental health. He's an adult, you can only do so much.

@CampervanKween thank you for your kindness

This!

As hard as it is there's only so much you can do to motivate your dad. If he doesn't want to do his exercises or attend group sessions, you can't make him.

My dad is further along with Parkinson's (16+ years and only 62 when diagnosed). He has now totally given up and recently confided in me that he's started reducing his medication, presumably in the hope that it will speed up his demise.

My mum is blissfully unaware. I think he purposely waited until we spent a rare afternoon alone.