To hate, hate, hate Parkinsons's Disease?

My grandfather also had this disease. I am really sorry for you and what you are going through.

No pointythings. You are not being unreasonable

Very sorry, OP. I sometimes think the debilitating, person-stripping diseases are so much worse than others. :(

I remember reading about Parkinson's disease when Michael J Fox was diagnoses and thinking how appalling and how very cruel. I feel desperately sorry for anybody suffering from it.

pointy things - I really feel for you.
My Dad has a similar neurological disease and was diagnosed when I was 18 and has been deteriorating ever since. My Mum is in a similar position to yours.
It's a terrible grieving process watching their lives get so hard and seeing the horrible changes.
Keep posting, it's really good to get it out I think.
All I can say is that over the years I have never accepted my Dad's disease but the anger and fear has got easier to deal with. Look after yourself as well because it's important to keep your life going and your parents will get strength from that. xxx

YANBU

I am an occupational therapist as well, i second the advice about finding a support group. Also people with parkinson's disease are at a high risk of falls, so an OT assessment at home could reduce some of the risk factors.

The key with Parkinsons is symptom management and getting the medication right. This will need constant review and adjustment as his needs change.

Oh yes, this is really important - my dad's meds get tweaked all the time, especially if there's been a sudden deterioration in his condition. He usually sees a difference within hours (although it is only holding the symptoms at bay). If your dad does feel that he's going downhill rapidly, he should demand that his doctors review his medication asap.

my nan lived with it for 16 years she passed away wen i was 8 so never knew her when she wasnt ill. such a strong women reduced 2 a small frail old lady. its only wot i can remember of her. such a cruel disease. sending my love x

I'm so sorry to hear about your dad. I may have some advice that could help, but he may have already accessed these services.
I'm an Occupational Therapist (OT) who works for a local authority (Social Services) and I visit people like your dad in their own home to assess, make recommendations and service provisions to maximise their independence and safety. If he's not already had an assessment make a referral to his local Social Services for an OT assessment. They will check his transfers and make sure he can move around his home more independently.
Also make sure he's seen a specialist Parkinsons doctor at his hospital - depending on where he lives he may have to travel to one of the larger hospitals. The key with Parkinsons is symptom management and getting the medication right. This will need constant review and adjustment as his needs change. So ask for a new referral if he's not been reviewed recently.
Lastly there are many support groups for both your dad and his carers (your mum and you). Ask his Parkinsons nurse, or use google to find local groups. The Parkinsons disease association is one of the main ones.
www.parkinsons.org.uk/
Wishing you all well, Trees.

YANBU - my lovely aunt had it and it was a cruel and awful decline.

YANBU

My dad has it too. He was only in his mid 50s when he was diagnosed. He's 61 now. It's so cruel - these are the years when he and my mum should be getting to travel and have loads of fun together after decades of putting their kids first and making all kinds of sacrifices for us. I won't go on, but can relate to so much of what you've said. So sorry that your dad is going through this, it's fucking horrible

Pointy My dad was diagnosed when I was 12 and he was 50 and on my mum's 40th birthday. I grew up with PD, later Alzheimer's too. we moved too. Mum took on more and more jobs to pay for his nursing (and had 4 kids to look after). I could have written your post. Except dad was never sporty, but - get this - he loved model making, although he was mostly cultured/witty/well read/cerebral/sharp minded.

It is a truly shit disease, and as you say, so long term. Dad degenerated for 12 years before he died - he just got weaker and weaker until his immune system was no good and he got pneumonia he could not fight. I am not sure if it was better when the intellectual degeneration started. Maybe, at least he did n't know what was going on any more. Hard for everyone else though. Dad's brain was what he was about.

I am 40 now, and still a bit angry that he didn't see his kids graduate, get married, have their own children. Actually scrap that, I am angry that he didn't see me do any of those things. I never knew him as an adult. My fantasy dinner party guest would be "Well Dad" circa 1975, and me now.

You have all my support and sympathy, and un MNy hugs. I live in fear of it being hereditary.

And come on here to rant and vent and say what you really need to say but can't in real life.
And remember anger is a great source to challenge to get things done

Your Poor family, My Gran Uncle had this awful disease and it was awful to see him go down hill, he was also a very active man who was a carpenter and used to make us wooden toys.
TBH he went down hill very fast after diagnosis and he could never really accept it but when he began the physio and adapted his life by accepting help things got a better for him and his wife, we always included him in days out and have lovely pics of him in his wheelchair with the dc on his lap, he went to Lourdes and France and travelled a lot with family so things will be different but at the moment still doable so plse make the most of it and build lovely memories and take lots of photographs
Plse look into respite so as your Mum can get a break as well.