Parkinsons - Just a little cry

[Nothernsoulfood]

I don’t really know where to start, but I find myself in tears tonight after listening to the most beautiful rendition of a Disney song

My Dad was diagnosed with Parkinson's about 8 months ago after years of minor symptoms we finally persuaded him to see a Dr, over the last few months there has been a steady decline in his overall health, his mobility as reduced to now needing a wheel chair and he gets confused very easily, he has been given meds which were helping.

He had a fall about 4 weeks ago and since then there has been a massive decline in his health, I see him most weekends and there is a decline each time, speaking to mum there is a decline almost every day, he is now struggling to walk at all at kind of freezes and falls over, he is also getting more confused, calling mum my sisters name and getting worked up and worried about silly things like he is eating to much, even though he is stick thin, but eating normal amounts. Mum also says he is now incontinent at night and can’t manage the stairs.

Obviously I am trying to support them both while working and being a single parent.

I am finding it hard to concentrate at work, and it is horrible to say but I can;t see Dad lasting that much longer, he is obviously not Dad I knew and loved now and I hate to say it I a mentally preparing in my mind for when he does go and what I will need to do to support Mum.

I am just a bag of emotion at the moment, want to be there for them both, but just really worried as well. Sorry just sharing tonight as I havnt really got any one I can share with.

This sounds very much like when my dear dad had Parkinson’s & my heart goes out to you. Do you have siblings to share the burden of it all and does he have a care package?

No care package at the moment, until a few weeks ago he was Ok ish, he has just had such a rapid decline. I have suggetsed to Mum that she speaks to the Dr and PD nurse about what support there is.

I do have a sister who lives a couple of hrs away, Mum is reluctant to share to miuch with her as my sister gets upset very easily. I am not sure I agree with that , but not my place to go against it.

my dad also has Parkinson’s :(
im so sorry for your situation, it sounds very tough. Sending a virtual hug

Another daughter who had a father with Parkinson’s sending a big hug

It's a cruel, cruel illness and my heart really goes out to you. My dad was diagnosed with Parkinson's about 18 months ago and we lost pieces of him steadily which along with the physical symptoms seemed unbearable. Have you got any wider support? Social care assessment? Attendance allowance isn't means tested and could help fund a little bit of help for your mum. The constant worry is exhausting and I'm not surprised that you're worn out xx

My mum was diagnosed just over a year ago and it's shit. She was so fit and active and healthy and as soon as lockdown happened her symptoms started. There was zero clue before her life slowed down.

We couldn't even get an NHS appt until a month ago so paid privately and its just such an awful shit sad situation so sending a big hug. My mum is okay at the moment but very slow and stiff and I am terrified.

Do you have a parkinons nurse I think it is?

Another hug from me. My dad died in 2009 and his last few years were similar. He had amazing carers at home who supported both him and my mum.

Another one with a DF with Parkinson’s here too.

definitely ring his Parkinson’s nurse as they are there to advise. Sounds like it has progressed much quicker than usual - and they will want to know. At the very least they will review his meds.

i feel your pain - I’ve been through this. It’s shit.

Yes, he has a PD nurse, although they are somewhat overwellmed so Mum struggles a little to get help. It is getting to the stage where we need to think about care packages

PD could be masking other diagnosis. Has he been checked for UTI?

Was just coming to say the same thing.

PD doesn’t usually progress quite so fast. (My parent has been living with it for 12+ years and I know that it is a spectrum but 8 months to deteriorate that much is very quick).

Was gonna say he needs checking for uti. Utis in older people can be brutal.

Also please pay for a private consult if you can for him. It has been the best £200 we ever spent.

My dad passed away from Parkinson’s in March this year after being diagnosed in 2020. He had a very rapid decline and we found out that he had Parkinson’s Plus which is a more severe form and doesn’t respond to medication.

The thing that caused his downfall was losing his ability to swallow which resulted in aspiration pneumonia. The doctor’s inserted a peg feeding tube into his stomach but in hindsight this only prolonged the inevitable. It was distressing for him not being able to eat/drink and being kept alive by a tube.
I would recommend knowing your dad’s wishes if it gets to this stage for him especially if he is declining cognitively. It really is an awful disease with not much progression in the way of treatment.

Incidences of Parkinson’s seem to be rapidly accelerating. Everyone I know seems to know someone or have a close relative with the disease. I wonder why there is not greater concern as to what is causing such an increase? Agree with the previous poster that there seems to have been relatively little by way of medical advances in treatment/cure for this dreadful illness.

DF also has PD as does his siblings. No help but it is worth going back to medical leads to check there isn't anything else going on. Your DFs progression is unusual in its speed, and other diseases can be misdiagnosed and treated as PD in the early days.

My Dad has PD too. I agree the rapid decline, especially after a fall, indicates delirium on top of the Parkinson’s. Last time my Dad was like this he had a UTI. Definitely ask his GP to review him.
My Dad’s been diagnosed for 10 years and he has had ups and downs but with medications is living pretty well. Sometimes when he’s deteriorated they’re tweaked his meds and he picks up again. Monsters by James Blunt resonates 😢
I hope with the right treatment it’s the same for your Dad.

My Dad has Parkinson's. He's 14 years post diagnosis. The progression has been much slower for him but he's at the point of needing a lot of care. They have a continuing care package in place which covers 4 visits of half an hour a day.

Quite often what has seemed like a very rapid decline has turned out to be an infection that once treated effectively has reversed what we had thought was a sudden steep decline. Things like C diff. are worth ruling out if there's sudden bowel incontinence.

I'd suggest he sees his GP to test for infection just in case there's something else at play here.

Regarding the cognitive issues, Parkinson's dementia is a thing but it's worth knowing that some of the drugs to moderate the tremors/dyskinesia have side effects of things like hallucinations and confusion. It's a balance between treating the physical without making the cognitive side effects too difficult.

Hugs and solidarity @Nothernsoulfood

My dad had Parkinson's. He died, ultimately of pneumonia he was too weak to fight, 30 years ago (I was early 20s) after declining health for 12 years.

Can you get signed off work with stress at all?

I wish you and your family well.

When my mum saw the private consultant a year ago, he mentioned that cases were increasing but they weren't sure why and how and if covid affected it.

I am positive had covid and lockdown not happened that my mums symptoms would not have started yet. The world stopped and her symptoms literally started overnight.

Another daughter of a Parkinson’s dad here, although my dad died some years ago.

You should definitely be getting carers in place because this is going to wear your mum out, I can’t imagine how she’s coping with incontinence problems. He should at least be getting help to get washed and dressed, and possibly put to bed. Have they applied for Attendance Allowance? This would cover the cost of (some) care.

I agree that that sounds like an unusually rapid progression and it may be that he has a UTI. It’s possible that he might not have been drinking enough because he’s worried about the incontinence.

If you haven’t already, please ask your parents to consider a Power of Attorney. We had this in place for my dad and it made life so much easier. I had no idea in those days that the end stage of Parkinson’s would lead to loss of capacity. I don’t think your dad is anywhere near that from the sound of it, but getting a POA in place could be a huge help to you and your mum.

I do hope that his current symptoms can be resolved, unfortunately my experiences that you have to push and push for help. Wishing you courage and strength.

Same thing happened to my parent.

Nothing has accelerated their symptoms like the lockdowns have. The isolation, the fear, the worry, the lack of real world contact. Which makes me curious about how much in PD is psychosomatic. I think there’s a lot they don’t understand about PD and as another poster has pointed out there’s a huge amount of money going towards PD research/charities but very little in the way of new treatments or understanding of the disease. The main drug for it has been around for decades.

Thanks for all your kind words and advice. I really do appreciate it.

Yes my father had it too, although it was very slow in his case and didn't affect him cognitively. He died before covid came along.

My uncle also has it (mum's side of the family). He's also had it for a long time.