Parent with Parkinson’s

[2lsinllama]

Looking for any advice/support from anyone who has a parent with Parkinson’s. I don’t know how best to support my mum

Hello @2lsinllama, how progressed is her condition?

She was diagnosed several years ago and had few symptoms but just recently she seems a lot worse. Hunched over, shaking more. Trouble remembering things and very emotional. On medication for depression as well.

Personally I think the last year and a half have made things unbearable. My dad (diagnosed 15 years ago) was coping before, now I feel he's waiting to die.

Is your dad around to help or is your mum on her own? Does she have carers in? Does she find comfort in you just being there?

@2lsinllama
My dear dad had Parkinson's & my heart goes out to anyone who has this devastating condition.

Definitely contact her GP. It sounds as though her medication needs a tweak. But there are other things you can do. Does she have a Parkinson's nurse? Parkinson's nurses are specialists and can give advice about medication & mobility issues. Your GP should have details of one who covers your mum's area. Also, is she getting her medication on time every time? For complicated reasons, my dad didn't. Not all medical practitioners realise how important this is, and it wasn't until my dad was hospitalised on a specialised ward that we saw what a difference it made to him.

You can also contact Parkinson's UK at www.parkinsons.org.uk/ for support.

Best of luck.

My dad has Parkinsons .

My experience has been that you have to fight to get any support. A lot of HCPs didn't seem to know much about the disease or didn't do much to help (my DM once threatened to wheel my dad down to the GP surgery and leave him in reception if they didn't call her back ). However every so often there would be one amazing HCP who would know their stuff and really help. If he doesn't already have a Parkinsons nurse then get one, my dad's was amazing and suggested loads of stuff we wouldn't have thought of e.g. weighted cutlery, charities that can help, support groups for carers, etc.
The other thing I would say is be aware of any signs of dementia. It is more common in men with Parkinsons than in women but still good to keep in mind. The dementia has proved to be worse than the Parkinsons for my dad and we had a real struggle getting anyone to take it seriously because any symptoms were written off by doctors as 'worsening Parkinsons'.

My dad has Parkinson's. Hugs OP.

DD and MIL (same age) both have Parkinson's.

MIL has fully engaged with support groups and exercise classes - these were offered for a short time on the NHS but the organiser encouraged everyone to continue afterwards. She seems to have kept her symptoms at bay for 6 years. She's a little more 'elderly' now, but how much of that is normal ageing and how much is the Parkinson's we will never know.

DDad on the other hand was diagnosed only a year of so ago, and he has resoundingly refused to engage with classes or exercise. We have tried everything.

It's heartbreaking his symptoms are progressing much quicker and he is a shadow of his former self.

DS is considering medicine and is volunteering at the Parkinson exercise classes. As he has a sporting background, he is really interested in the benefits regular (gentle) exercise. The differences in his two grandparents are clear to see ☹️

Who does she see about her Parkinson's? She should have a Parkinson's nurse that you can get in touch for a review as it sounds as if she needs her medication reviewed.

Sadly Dementia in Parkinsons does happen when people have had Parkinsons a long time so I would also ask for a Memory Clinic referral.

To all those suggesting Parkinsons nurses, how do you actually get to see/speak to them when they won't return calls? Despite repeated attempts by myself, dad's doctor and social services, he hasn't seen or spoken to anyone since before the first lockdown.

Over 18 months now and previous to that he had a 15 month gap between appontments. It's like they've just given up on him

Thanks for all the replies. Things have been hard recently as my grandmother died and it hit mum hard. We live 100s of miles away so don’t see my parents that often. We last saw them at the end of June and I was surprised and saddened by the change in her.
She does have a Parkinson’s nurse but I’m not sure I always hear the full story.
Going to have a cuppa and read these replies properly. Thanks again

If you haven't done so already, get power of attorney done while your mum still has mental capacity. You can do it yourself although there's lots of pages and you need to double check everything carefully. Much cheaper than paying a solicitor!

My Dad has end stage Parkinson's now, the dementia set in very quickly and he's currently in a home while they do a continuous healthcare plan. We don't know if he'll come home yet. Or how we pay for whatever care he'll need.

You need to push for help from outside. There is plenty of help out there but no one tells you where to find it. Occupational health can check the house and install grab rails etc.

Be prepared for it to be hard to deal with. You'll need looking after towards the end too. One thing that helps us is knowing that dad always said he wasn't in pain. He was frustrated and scared of how it would progress but not physical pain as such.