DF 84 Diagnosed with Parkinson's - what do I need to know?

[keithisgone]

DF is 84 and pretty fit considering (still plays 18 holes of golf 2x per week). He has just been told he has Parkinson's - apart from the obvious tremor, he has been having problems with balance (several falls that he has kept quiet about), beginning of memory problems and speech problems (he says he knows what he wants to say, but the words sometimes come out wrong) and I suspect he also has depression.

He says he wasn't given any information by the neurologist and I am finding what I have read online pretty scary.

What sort of plans should he and DM (83) be putting in place? We have reported his diagnosis to the DVLA and his insurance company - and so far they have said he is ok to continue driving.

It will be worth discussing POAs.

It might also be worth them considering the suitability of their current home and either planning adaptations or looking at an early move to something more future proof, with community/support for your mother as well.

My Dad was diagnosed 2 1/2 years ago (in his mid 60s). The best thing about Parkinson's is that (at least in the short term) it is treatable. My Dad is like a different man. His tremor has eased, his mobility is better, his voice is louder, he can do buttons again. He is quite active, he goes dancing at least once a week and does half an hour on his treadmill most days. It took 6 months to get the medication to the optimum level. He's been there for 2 years now. He still has to pace himself, it takes him a good hour to get up, showered and dressed in the morning. He'll nap in the afternoon if he's out at night.

Unfortunately he is likely to deteriorate in the future, decreased mobility, speech problems. Unfortunately some people with PD do go on to develop Dementia too.

Practical stuff we've done: my Dad lives in a bungalow so we are optimistic that he will be able to stay there for quite a while with support. He had his bathroom done with a walk in shower, no step to get over. He's made his garden easy to maintain and pays a gardener to do odd jobs so he's not doing heavy work himself. We've also done power of attorney for health and finance and discussed the future, he wants to stay at home with care as long as is practical but accepts he may need to go into a care home.

My Dad has found Parkinson's UK an invaluable support network. He attends meetings locally (although he's very well compared to most), he also sees the consultant or hospital PD nurse every 6 months for monitoring.

Hope this helps a bit.

I'm 10 years in with my dad (diagnosed at 63) and the best thing your dad can do would be to try and keep active. It makes a big difference. Unfortunately my dad had to give up his beloved golf and since then his health has gone signicantly downhill. He gave up driving about 2 years ago and is now using a wheelchair out as his walking is getting worse.

It's heartbreaking to see and knowing that nothing more can be done to help him. He's been through all the meds available in his health authority but there's no funding for a dopamine pump (our last hope).

On the plus side speach therapy has helped, he's still able to cope at home and i've finally persuaded him to out a POA in place!

What FaithAgain said - enjoy the now but plan for what's coming next. I work with the elderly. It may all be years ahead but the better the planning the smoother the transition (and the easier it is to be positive and accepting). He will need to stop driving at some stage (maybe sooner rather than later); will need to think about a walk in shower; think about domestic help (cleaner etc) if he hasn't already (Age UK offer this); think about stairs; get POA in place; consider an Advance Decision; keep an eye out for the nice local care homes with good food that can offer respite care. I also think it's an excellent plan to get elderly parents onto the internet and handy with a Tablet so they can video call their families and grandkids and see the family photos - makes a huge difference in reducing isolation and bringing the generations together.

Oh and depression is hugely under-diagnosed in the elderly and tends to be treated with drugs rather than talking therapy. See if you can get some counselling for him (elderly charities often offer this).

Enjoy the now but plan for the future this absolutely sums it up for us!

I worked in elderly care for years (nurse). My ward specialised in PD, in fact it was me that realised Dad had it. I've had to move jobs because I was constantly confronted with end stage patients, worst case scenarios and yet for now, my Dad is well. In fact the consultant reviewed him and said Your Dad - I am a miracle worker! Dad is doing the things he wants to do, going on the holidays he's always wanted, doing smaller trips, spending time with the grandchildren. I think he feels like he got his life back when the meds kicked in but he doesn't know how long he'll be well for. He does cheerfully say You never know, my heart might give out first! It does give you a different view of life, life is short and we make the most of it.

Thanks for the replies. We've declared his condition to the DVLA and his insurers and for now he is allowed to keep his driving licence which was a huge relief to him (although I have to say I was surprised bearing in mind both his age and his condition). He and my mother had already made Advanced Decisions before he was diagnosed and have a POA but name each other - I am hoping to persuade them to name me in addition.

Their house is totally unsuitable - I have suggested a stair lift and the possibility of creating a downstairs bedroom and bathroom. They could move, but that seems very daunting at the moment.