Parkinson's

[jamiecooks]

My dad is almost 70 and has recently been diagnosed with Parkinson's. We have noticed a decline in him for the last couple of years really - being unable to open jars, struggling with knife & fork etc, very slow with his walking and also forgetting/repeating things a lot. But there has been a formal diagnosis now by a specialist.

He isn't yet on medication and is very very determined to stave it off as far as he can (he does numerous exercises each day and plays golf several times a week) but I think he is declining pretty rapidly. I don't see him very often as we live a flight away so I guess I notice it quite a lot each time I see him.

Mum and dad have both prepared POA's for my brother and I to sign (I am just waiting for my new passport having recently changed my name after getting married) but I guess I just don't know what to expect going forwards.

I think once he can't play golf anymore that will finish him off as he will just be devastated.

He has already said if he starts to get violent then he wants to be put in a home as he doesn't want to put my mum in danger.

It's so hard seeing this bright and fiercely independent man decline like this. He worked hard all his life, retired at 65 and then he gets this. It's just crap.

Has anyone any experiences they can share? I feel so scared for him and for my mum.

I’m so sorry OP. There is lots of help out there if he will accept it. Parkinson’s UK is a good start. I’m an Occupational Therapist with a community neuro team, with a special interest in Parkinson’s. We also and had a specialist Parkinson’s nurse.
There is so much that can be done these days with the right medication and loads of techniques and aids to help in overcoming symptoms. There are also support groups. There is a good Nordic walking group where I live, as the rhythmic movement is particularly suitable for people with Parkinson’s.
Of course it may be too soon for all of this, but I just wanted to say, there is help out there. Best wishes.

Thank you chives, it’s good to know there’s support out there. He’s a very proud man so not sure if he will seek the support he should - that said, if I can show him evidence it makes a difference he might just go for it.

Never thought this would happen to him - he was so fit and healthy and playing county level tennis well into his 50’s

My mum was diagnosed last year at 77, she'd had the tremor a while but nobody said anything, it was like the elephant in the room... There was a familial link as her father had it too but was quite a lot younger in age when he showed symptoms.

Anyway, she was formally diagnosed and didn't need medication at that point but the consultant has now suggested trying medication which seems to be helping her.

Mentally she is still quite with it but physically her symptoms are evident. We did discuss PoA last year but nothing has been done, I really must try and sort that out.

Like you OP, I wonder what's ahead of us but they are making medical discoveries all the time, so we have to hope it will happen in her lifetime.

Meant to say it's great your dad is doing lots of exercise, that can only be a good thing. That's something my mum doesn't do much of, unfortunately.

My Grandad started with a tremor 7 years ago and it took until last year for us to finally get a Parkinson's diagnosis. I'll be honest, his physical symptoms are bad, they have worsened over the past 6 months. His mouth has now started to move when not talking, it all stared with one finger, now his whole right arm and leg, and it's starting on his left side now too shake severely all day. His memory has slowly but surely got worse as well, I know this is not exactly what you wanted to hear and I'm so very sorry for you and your family. My Grandad has been on medication for a few years now to help him sleep and to ease the shaking a little bit but only recently have they provided medication for the Parkinson's itself, he is under a specialist hospital in Liverpool who keep an eye on him every now and then they told us yesterday he's still ok to drive! I hope and pray for your family that everything is ok, it is hard to stay positive and not get frustrated some days but they're still the same person inside x

I should also say, my Grandad went the gym every day of the week for a few hours, more social I think however he can't do that anymore, he feels embarrassed and struggles. x

My father has Parkinson's and (I know this is easier said than done!) but the more he has engaged with medication, the better he is. It's taken about 5 years (diagnosed 10
Years ago) for him to really tell his Parkinson's nurse about his symptoms.

Amazingly (sarcasm) she knows what she's talking about and can help at least control, almost all of his symptoms. So hang in there. Much love.

Thanks ladies and sorry to all and their families also going through this.

Interesting re medication as my dad I thibk is quite opposed to that but it might be worth investigating. @tillythedog my dad is near Liverpool so they could well be under the same person.

Trying to see him as much as possible now especially as we have a 10 month old who is his first grandchild. Thankfully my brother lives round corner so at least know he has him and my mum

He really needs to think hard about the meds. It's life enhancing. Otherwise the risk is he will deteriorate and lose function that will Never return even after he starts taking them

M’y MIL was diagnosed a couple of years ago. My understanding if the meds is that it’s important to get in them sooner rather than later: they can’t curez Parkinson’s but they can slow or stop it progressing, and the longer he’s not taking them, the further his decline will be before its halted IYSWIM. But I may have misunderstood that.

Courage.

Thanks Bog and sorry you are also going through this with MIL. I think I'll have a chat with my mum and brother and possibly my uncle (he is a doctor and knows what's going on - there's lots of people my dad won't tell) and see what they say. Between us, we might be able to convince him to start taking them.

@jamiecooks my DGF was diagnosed with Parkinson's in his mid 70s. It started with a twitch in his hand and escalated over a period of ten years to where he couldn't walk unaided and sadly ended his life in a nursing home.

Through that whole time however, his mind was as sharp as ever and he was never violent. Right up until the end we were still having regular conversations. Occasionally it took him a few seconds to process what was being said but that equally could have been the result of old age. The disease does rob the body but often the mind stays intact. I hope this is the same for your dad

I'm sorry this is happening to your family.

My mother was diagnosed last year.

She is now on medication and while it has helped she is still very unsteady on her feet. This knocks her confidence so is very reluctant to go out. There is a local support group which I convinced her to go to once but since then she's shown no interest in going again when I mention it.

The meds have visibly reduced her tremor, she says she feels "shaky inside" her legs mainly. Probably why she's unsteady. My understanding is the same as bogstandard's the sooner they can get them the better and at the correct dose.

Her Parkinson Nurse is amazing, listening with helpful advice and reassurance. She has his telephone number if there is anything she wants to talk over.

Her memory is atrocious. She no longer drives, her decision. Physically I think she could manage her automatic car but doesn't recognise familiar roads or how we got there, so I'm glad she's off the road. I'm constantly reminding her about things, she has a big calendar (family organiser one) that I write down things so she can look to see things without ringing me numerous times to ask about dates/appts etc.

My main problem is that she's very controlling and manipulative, before diagnosis this was manageable with boundaries and to a certain extent distance, which is obviously impossible now. I share her care with my brother, she tries in a nasty way to play us off against each other as he is the golden child.

We both know its toxic so take it in turns to distance ourselves every so often. I'm away atm, she rang last night with her latest attempt at control, what she didn't realise is that I was one step ahead of her and had organised my brother, she still got a dig in though. That side of her is more difficult to deal with than all her ailments put together.

My elderly father (now 84 yrs) was diagnosed with Parkinson’s about 3 years ago. He was super fit for his age when diagnosed but had to giving up cycling and golf because of poor balance. He has found joining a local Parkinson’s exercise group and a Parkinson’s choir really beneficial (health wise, but also for the support he gets). He still goes to the gym 3 times per week. He has had a few incidents where he has had difficulty swallowing.

Short term, he found cannabis oil really beneficial for his tremors but has been advised to stop this because of new medication. He has declined cognitively over the last 6 months - on occasions, he cannot process what people are saying and sometimes cannot find the words for what he wants to say, but most of the time he is fairly sharp. We have had one episode where he got very angry and frightened my mother - I am hoping this is a one off.

I can’t say anything to make you feel better but I can give you a brief account of FIL just for info.

He was a very fit and active man into his seventies. Owned his own garage and was still working up until his diagnosis. Also cared for MIL who had/has Lymphoma. From diagnosis to his death it took six years. I would say he was in okay health for probably 18 months, then become unable to walk and spent the last four years of his life bedridden with carers twice a day and MIL caring for him.

It was extremely distressing I will admit. I know there are some new medications out there which might offer more hope. The medications FIL was on seemed to make him comfortable, they couldn’t reverse the illness though.

How is your Dad doing, OP? My mum's been on medication for a couple of months now and has had no side effects luckily.
I haven't seen her since she started it but she seems to be better on it from what she says.

You've done the most important thing - or say you're going to - by getting LPA in Health and Welfare, and Finance.

Failure to do this, esp the former, and at a later date the State - comprised of Social Services, the local NHS CCG, pretty much anyone except you in fact - assumes control over your parent. It will be the decision maker, not you. And the State saves money from your parent's death, even if your parent is self-funding.

Order from Parkinson's UK the free Parkinson's handbook, and the Advanced Parkinson's handbook, also free, too. Check out the forum as well.

Personally we got nothing really of use from Surrey's Parkinson's Nurses, indeed one suspects they are glorified Social Workers who use the matter to get over the threshold and case the joint. Yours may be different, but beware that if you are in a county or local authority with a high elderly population, they may have ways of working through that backlog.

For some reason, Parkinson's seems to be treated differently to other illnesses, in a more ominous way. Maybe the medication is very costly, I don't know.

On the subject, the drugs can adversely affect one and you might think wrongly that it is the Parkinson's suddenly taking hold when in fact it's just the drugs that need tweaking, esp if they send the taker crazy batshit, seeing things that aren't there, getting paranoid and so on. It's just the drugs most likely, so address it. Watch out if they are also taking painkillers.

Do a bone density test. A stumble due to poor walking can easily lead to a fracture that goes unnoticed for two weeks then worsens because old people don't always notice the pain at first. Check for osteoporosis and if it's there then Adcal D3 and weekly Fosimax (sp) may be prescribed.

Two things: keep walking with a Zimmer if necessary, the use of steps has been shown to have a big neurological advantage.
Also: high fluid intake also can ward off mental erosion it seems, start with 300ml in the morning, aim for 1.5 litres daily, more in a heatwave.

Care homes are a racket, and often work in conjunction with a corrupt local authority to hush up any wrongdoing.

My dad was diagnosed in his early fifties, he's now 75. He's never particularly had tremors, his manifests more in the speed at which he does things and his (lack of) balance. The last few years his falls have really gotten worse, so much so that I don't like him being out alone with my 4yr old. He has however in the last few weeks got himself a walker, which will really help. Although his worst falls tend to be when he's moving around the house, negotiating changes in direction etc. But luckily in general the progression of the parkinsons has been pretty slow. I presume that's down to an early diagnosis and the subsequent medication to delay the progress?

It may well be due to medication, that said Parky's is different with everyone, it is hard to really say for sure how it will play out.
Your dad seems to be doing pretty well compared with my late mother who was diagnosed at 69, so it just goes to show I guess.

My dad has Parkinsons. He has been living with it for about 10 years and is still living independently. We lost Mum last year and he's managing well, but just about to move into a flat near me, so that I'm nearer at hand. We don't know what the future holds either, but take each step as it comes.

Exercise is important for Dad - he was always a great hiker and golfer and still gets out for a walk most days. A whole golf is now beyond him, but he has friends at the club who he meets up with for a few holes and then rather longer in the bar. Life goes on!

Dad does take medication, including something which is intended to slow the progression of the disease. Be aware that, by putting off the moment when he starts taking medication, your father may actually be allowing the disease to progress faster.

My mum was diagnosed with Parkinsons earlier this year, aged 66. It's been very tough, she's on medication and getting the support with physio and Parkinsons nurse, but she's still really struggling emotionally with the diagnosis. She has become an old lady very quickly. A year or so ago she was an independent, no nonsense kind of a woman. Now she's lost all of her confidence, can't make a simple decision without help and seems to have written herself off. I'm trying to keep active with her, but between the difficulties walking (and tripping) along with bladder control problems, it's harder to get out and about.

We have sorted POA for her and my dad (who has dementia...) I don't know what the next few years hold but it really scares me.

I know you were probably hoping for more positive stories OP, so apologies for the glumness, but wanted to let you know you're not alone with this. It's very tough. I've been meaning to post on this section for ages but with both my parents ill, I feel if I open the floodgates I won't be able to close them again....

((Hugs)).
My mum is 87 and is now in a care home.
She was diagnosed with Parkinson's about 2 years ago.
Despite the meds she has deteriorated recently and has got associated dementia problems.
She struggles to retain things she has been told and gets upset as bad news (even if it is old) is fresh to her and upsets her again.
The carers have told me only to say things once and I'm trying to remember to do this but it's difficult as sometimes she seems quite lucid so it's a bit like treading on egg shells.
Physically she can no longer stand without the help of a hoist and she finds this very frustrating.
She also has problems with double incontinence and relies on the staff for all intimate care.
I noticed yesterday that she now has her drinks in a sippy cup, which to me, underlined how rapidly the disease is progressing.
One thing that she has enjoyed is that I have made her a photo album of current family photos so she can look through them with me or her carers and it helps her a lot as she feels more connected.
Get as much support as you can, others have already mentioned the help from Parkinson's nurses etc.
It's a terrible disease but meds can help a little.

Hi, my DF was diagnosed 8 years ago at 70. He was quite sprightly until a year before that and had started to drag his feet and shuffle.

He is now in a nursing home and very immobile. He has Lewy Body Dementia (more common with Parkinsons's) and vascular dementia which kicked in very suddenly a year ago.

Things that are really invaluable with Parkinson's - the support of a Parkinson's nurse. Do find his local one - there will be one and they are amazing people. They will point to all the local services, liaise with consultants and are an intimate part of the management of this horrible disease. They can also tweak medicine and this is important.

Meds for Parkinson's are really essential to slow the disease. They really aren't something to wait about until you 'need' them - they will make a genuine difference to how long your DF is active for. It's really important to take that on board. Also important to remember is that its a continual tweaking of meds the whole time (hence need for Parkinson's nurse) because there are a cocktail of drugs and they affect and help people in different ways.

Also a word of caution: some of the meds cause hallucinations. The disease itself causes these but they can be made more prominent. Some of the meds cause obsessive behaviour like gambling, compulsive shopping or (sorry to say but its not talked about) increased libido and less inhibition about this. Your DM may not feel able to mention this (I know from personal experience) but its important for her that its addressed.

Don't let that put you off the meds. They will prolong his activity by years

Also there are groups for Parkinson's but it can be scary. One thing that is good is singing and dance as it bypasses some of the brain functions that inhibit walking and speaking. someone with difficulty talking or walking can still dance or sing sometimes with Parkinson's

Best of luck