My Dad retired a year ago and in that time I’ve noticed him slowing down and last time I saw him he said that he’s been referred to to neurologist as he had developed a shake and his leg has been dragging a bit affecting his walking. Yesterday he told me that he’s been diagnosed with Parkinson’s. He’s feeling a bit p***ed off and is getting his head round it and I’m coming to terms with it too. Its hard as we live 300 miles apart but want to give him as much support as possible and want to know how we can help and what to expect. Does anyone have any experiences of this disease? I know people have lived with it for years such as Micheal J Fox. The thing is its hard as I always think of my Dad as invincible.

My mother was diagnosed 6 months ago. I spend half my time in austria and half my time in wales.
When in the uk I try and spend as much time with her as possible as I know it will only get worse. She’s in good spirits after the initial shock and still has quite an active social life. Medication helps and she has daily exercises to keep her flexible.I worry when I’m away but I know my family are there for her if needed.

Fascinating condition which has psychological as well as physical effects. Progression of the condition can take a hell of a long time before you get to the stage where it has an adverse effect on mobility.

Also, to go way down the line – the treatments available for the most severely effected patients are verging on the miraculous.

My Dad has had the diagnosis for a couple of years and is just beginning medication (dopamine supplements?). The way he tells it he was relieved when the Doc gave him the diagnosis as there’s plenty of worse things someone in their mid-60s could hear.

That’s the main problem, really, in that my Dad is from that generation of men where they never, ever complain about their health. He could literally be at death’s door and he’d say he was fine and did I want to go out for a pint? So it’s hard to know how he is really feeling. He claims to be doing great but he’s slowed down a lot, also in his thought processes (ISTM) which is worrying.

We’re just 50 miles away and have a lot of family around so he is well supported. My mum is going in the opposite direction – she seems to be getting younger, so is good at motivating him to get out and about and doing stuff. We try to spend more time with him, bring the grandkids over etc. Not sure what else you can do?

Just to add another thing – my friend’s stepdad had Parkinson’s when we were in school. 22 years later, he’s still going and doesn’t seem that different to how he was (relative to his age – he’s late 70s now). So there must be vast differences in how the condition manifests.

Also, to go way down the line – the treatments available for the most severely effected patients are verging on the miraculous.

Watching surgery on TV a while ago (NHS anniversary programme on BBC, my jaw was on the floor when they stopped a ladies arm shake by flicking a switch. Admittedly they did have her skull open and where sticking electrodes on her brain but it was still staggeringly impressive stuff. Hopefully this will be scaled down and more accessible to a wider range of people with Parkinsons.

My father in law had Parkinson’s. The doctor gave him three years before he would notice a worsening of symptoms. In the event, it was more like seven.

Sadly for him, he developed some quite rare complications that were associated with the initial diagnosis, but not a direct result of the condition.

He died about 18 months ago but it was not the Parkinson’s that did for him. He was in his 80s so had had a pretty good innings.

I’ll echo the comments above regarding up to date medication. They do seem to have amazing results.

Yes, My father had it – with a load of other stuff ( heart issues, skin cancer and dementia). In the end it was the skin cancer that got him ( due to slow diagnosis on the NHS.

The Parkinsons seemed slow to get diagnosed – he had all the classis symptoms for many years – dragging his foot, shaking had etc, but the actual prognosis and treatment seemed to take a long time to arrive.

Because of the advent of senility – and TBH, when it hit, ok to off to la-la land took about 18 monthsm, it was difficult to assess how the Parkinson affected everything. Ironically, it was the thing that worried him most.

My stepkids dad has just been diagnosed (at 66)- it was devestating news to him ( as it would be) but you could see it developing for may the two years before that. They are all having quite a tough time – but that is psychological rather than physiological. Acceptance seems to be the problem

Father in Law was diagnosed earlier this year.
As above ,he was glad to have the symptoms that he had been having explained.
He has had a few ups and downs getting the medication right ,but is now
at a very stable level ,and coping well.
He is back to playing tennis twice a week and now knows what he can and can’t attempt ( tennis wise ).
I think being and wanting to be active has helped him put things in prospective ,so we will wait and hope that it stays this manageable.
He is 75.

Retrogirl, my sympathies. My “invincible dad” passed away very recently with PD being one of the last things he was suffering from. Sadly he was mis-diagnosed and so treatment was delayed. I can strongly recommend the Parkinsons UK for support. A volunteer called me in the early days with lots of great tips.

In hindsight, his symptoms were obvious – loss of energy, absent mindiness, slow eating, starting to stoop, mild incontinence etc . But the docs missed the link to PD. So they/we treated it wrongly ie too much stick and not enough carrot at first.

Like any degenerative disease care, talking and preparation are key. People live and manage with PD for a long time and can have good QoL. For my “invincible” this was not the case and the symptoms came all together and accelerated at the same time which was v hard to deal with for all of us. Reduced mobility, a sense of apathy (for previously active folk) and incontinence are a test for all. Then there are things like freezing in doorways etc.

Sorry this is all v raw and I am not painting a positive picture. In short, get advice from P UK, read all their stuff to help you prepare, try to be positive but be prepared and sympathetic when symptoms show themselves. I am cross about the misdiagnosis but at least you are over that stage.

Who looks after your Dad now? My mum was great but found it hard to accept as well. Easier for me and my brother to be sympathetic as we were not dealing 24/7. I found myself having to remind my mum about dads PD to help her and to help him.

Best of luck.

Watching surgery on TV a while ago (NHS anniversary programme on BBC, my jaw was on the floor when they stopped a ladies arm shake by flicking a switch. Admittedly they did have her skull open and where sticking electrodes on her brain but it was still staggeringly impressive stuff.

Deep brain stimulation surgery – they drill a hole in your skull and feed a couple of tiny electrodes deep into a specific part of your brain using x-ray guidance – they then feed a cable under your scalp and neck to your chest where they put in a battery pack with a magnetic switch on it. – I’ve seen one of those operations in the flesh (something that i feel truly privileged to have seen) , only they did both electrodes at the same time and the person didn’t need to be conscious at the time. So the operation is already way more developed than the procedure on that programme. Operation lasted 9 hours and cost about £50k.

The difference pre-op to post-op was incredible. The patient came in to hospital in a wheelchair, walked out with a delta walking frame. I saw the patient in a clinic 9 months later and they had no physical symptoms left.

My dad lived with Parkinsons for 15 years. It got him in the end both mentally (Lewy body dementia) and physically (couldn’t swallow saliva properly leading to terminal pneumonia).

I wish I’d been more assertive with the NHS at the start as I later found out he was initially under the “care” of a geriatrician not a neurologist which meant his medication was far from optimal. After a few years once I realised what was going on and we got him to a proper neurologist and got his meds sorted out he improved but by then the damage had been done. I can’t emphasise enough that you need to make sure your dad is with a really good consultant neurologist and his meds are being constantly monitored and optimised.

The dementia aspect of Parkinsons is something you don’t hear about much and it doesn’t affect all sufferers but its every bit as nasty as alzheimers. Fortunately there are new drugs which can have a big effect on it.

I’d also advise joining Parkinsons UK and maybe getting along to one of their local groups.

Other than that keep him active and interested

Good luck. With proper medication he should have a decent quality of life and hopefully live long enough so that he dies of something other than Parkinson’s

On lighter note, Princess Anne visited my kids school last summer. We were all lined up with the Union flags and the little kids were waving them madly when a mates 4 year old came out with this gem:

It is a shame Grandad isn’t he, he would be brilliant a waving flags

Yep, his Grandad has Parkinsons and a very bad arm shake!

Generally it does take a long time before the symptoms significantly affect someones lifestyle. My dear old Nan had it and my Uncle currently has. In fact my Uncle is one of the lucky ones to have received the surgery and has electrodes deep in his brain, and a cable under the skin running down to a sort of pacemaker high up on his chest near his shoulder blade. The difference in his motion and balance really was phenomenal.

My gran had it when I was younger (Late 30s now, I’d have been early teens at the time), so my memory of it’s hazy.

She was in her late 60s/early 70s at the time; I remember her visibly shaking and shuffling when walking but mentally she seemed relatively unchanged.

After a few years she was offered the chance to trial some new medication – the change in her was obvious and almost instantaneous. One memory that sticks with me as clear as anything is that we took her shopping the following week and rather than shuffling, as she had for years, she strode across the the car park like someone 1/4 of her age!

Reading some of the other posts, I suppose dementia did affect her later on, but whether that was related to the Parkinsons or not or just old age, I’m not sure.

My dad has it – he had to retire early, and cant drive any more. It does affect every aspect of his life, but he is generally fine. Make sure he finds out exactly what he is entitled to (lots of benefits, notability car, etc).

My Dad has it and my great-uncle had it before he passed away (83 yrs old and had parkinsons for 20yrs).

Two things we have learned as a family about it;
1. Don’t rush to invalid the person with it. They can still be very independent for a long time, bring in the professionals from the NHS to see what can be done around the house and in daily life. We changed cutlery and wine glasses that dad found easier to use, two simple things that make life normal.
2. The drugs are key with Parkinsons. Some might manage symptoms better but can leave the user unhappy and depressed. We had this with both my Uncle and my dad. Having a minor shake can be more tolerable for the patient than being permanently depressed, argue and battle with consultants to get the best quality of life for your dad. If one drug cocktail isn’t working get them to try another.

It’s going to be hard but the best way to deal with it is to accept it’s there and work at making life as good as possible for your dad. Mine still goes out with his walking group and does 8-10 miles every thursday whatever the weather, he still has hobbies including fiddly technical ones, he can still do DIY jobs round the house. He just does all these things a little slower than he did before.

Uncle has it, as does a client and it’s manifesting itself in very different ways in each of them.

Definitely seek out the Parkinsons Assoc – brilliant people and meeting others in the same position has worked wonders for my Uncle. They can provide a wealth of information & support.