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Life-limiting illness

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Original poster

Parkinsons Disease

48 replies

imoanruby · 01/03/2012 20:18

My mum was diagnosed last year and is still coming to terms with it, having ups and downs as to be expected..

Just wondered if anyone on here is in the same situation...it's very difficult..

OP posts:

Poudrenez · 22/03/2017 16:43

My Dad has Parkinson's, late stage. He was diagnosed young (aged 52) and is now 20 years in. Initially, I consoled myself that at least it wasn't cancer, but I take that back. Parkinsons is an awful debilitating disease. Up until 5 years ago my Dad would go into town on his own, and was generally pretty much with it. Now he has dementia and his world has shrunk down to nothing. You can't have a conversation with him so he doesn't see his friends, and he can't go anywhere without my stepmother, who he seems to find very annoying. I get the sense that the only fun he has is when he plays ping pong at the dementia group, and when I come round once a week. He says the same thing again and again and I find myself dreading his company. My sister who lives with him is horrible and shouts at him all the time, we've had arguments and now seem to have fallen out. It's incredible how much of a strain it is; everyone involved is basically devastated. I should point out though that first 15 years weren't too tough - if he was diagnosed now, in his early seventies, it's unlikely his condition would have degenerated to where it is now.

to everyone dealing with this.

2014newme · 22/03/2017 16:47

My dad has itand my grandfather had it but I don't see it as life limiting 🤔

It seems to run in our family o am concerned I may get it

Welshmamma · 23/03/2017 11:49

My mum is a shadow of her old self... she says she wishes she could be herself again.
I wish I could make it better for her. Even her mood has changed which I guess isn't surprising really.
I don't think it runs in families does it? It was one of the first things she asked when diagnosed and was told it didn't. I hope not!

Poudrenez · 23/03/2017 16:59

I think there's some increased chance of developing Parkinsons, but it's insignificant. That's what I'm clinging to anyway! It is undoubtedly a common disease in the general population, sadly.

Welshmamma · 25/03/2017 16:24

Crikey I would hate it! I join my mum for weekly swimming sessions for people with Parkinson's and there seems to be lots of younger people diagnosed. It's scary stuff!

Ohmywow · 30/03/2017 13:46

One in twenty people diagnosed with PD will be under 60...the definition of Young Onset PD. It is more common in men than women and to have PD while still planning a family is unusual. There is a genetic type but there is a blood test for it.

I know this because I was diagnosed at age 37 but my symptoms began before I had my first son. I have my second son after the diagnosis. I like to be different! You're right, it is a horrible disease and I would say it is life limiting although I would not say it is life ending.

Dementia is a common characteristic but is not necessarily inevitable. I hold onto that one. Also, there are lots of ways you can manage the Parkinson's as well as the drugs that they give you. The main one is exercise, followed by stress management and sadly, not drinking! While having Parkinson's has definitely been something I wouldn't choose, it has brought me so many amazing experiences as a result. To be honest it would be hard to say whether I would choose not to have it now. Because, if I did have it I wouldn't of done all the lovely things I've done so far. It has to be said however, that it puts strain on your family relationships and that is something I'm still coming to terms with.

As with all things in life, there's positives and negatives. I just bloody mindedly ignore all the negatives

Welshmamma · 30/03/2017 20:07

Ohmyhow so lovely that you have a positive mindset x My mam always says she doesn't need us to help she will do things until she can't do them anymore. She is one stubborn woman but I think she has the right attitude x
I think I find it hard because I grew up with this energetic, busy woman and sadly she just isn't that anymore. We do lots together and she is active. We walk and swim and do classes. She feels better for it and she makes me so proud x

Ohmywow · 31/03/2017 21:52

You also have to factor in the fact that time passes for everybody by which I mean even if you remember your mum is being this active person, ageing gets is all in the end and some of it might just be that. Parkinsons is one of those really odd diseases Some days you can't tell I've got it at all, other days I can't move or function properly. It's a bit like roulette. I completely understand your mothers attitude with respect to doing things herself. It's hard to give up independence even if it's only a tiny thing. Sounds like you are being lovely and being there. And quite frankly, having somebody there is the most important thing.

Mu123 · 31/03/2017 22:03

welshmamma im not saying its the case at your mums swimming club but in general its also worthy to note that a lot of doctors arent very aware of essential tremors so quite a mis-diagnosis is common too.

Christinayangstwistedsista · 03/04/2017 18:23

My mum has recently been diagnosed at the age of 71. She isn't coping with it very well as she has always been so fit and healthy

Blossomdeary · 03/04/2017 18:50

My DH has Parkinsons - we believe that it started before the age of 60. He knew what he had long before he chose to alert the medics to this - he is himself a doctor, so knew straight away what it was. He has been on treatment now for about 8 years.

The saying with PD is that you "die with it but not of it."

It has made a huge difference to our lives, particularly in wiping out most of our fun plans for our retirement. Over the years he has deteriorated and the number and range of drugs that he needs has increased. I spend most of my day saying "Have you taken your tablets?"

People do not realise that there is a lot more to PD than the tremors: loss of taste and smell, general weakness, hypotension (leading to sudden collapses), slowed down gut (severe constipation), depression and anxiety, difficulty in swallowing, weak voice - I could go on!

Some of the drugs carry their own problems: obsessional behaviours (sex, gambling etc.), blocked nose, nausea, sleepiness, acting out dreams (he once attacked me in his sleep!) etc.

But we just bash on - adapting to each change as it comes along. I would not recommend PD as a life choice, but, as with everything, you just take what life throws at you and get on with it, concentrating on what CAN be done and not on what can't.

Welshmamma · 03/04/2017 19:55

All we can do is love and support our loved ones xx Not easy sometimes xx

Christinayangstwistedsista · 03/04/2017 20:36

I'm worried sick about her

Blanky · 04/04/2017 07:08

My dad was diagnosed at age 55, 5 years ago. My grandfather also had this horrible disease diagnosed quite young and like poudrenez I'm living in hope this is a coincidence. I can't bare to watch him suffer and know I'm probably going to get it too. We were told to expect /hope for 10 good years and I just keep thinking gosh we're halfway through already. So glad this post is active again.

Welshmamma · 04/04/2017 22:28

Christy does she have a Parkinson's Nurse? My mums is brilliant x I would ring the Parkinson's UK have been great too xx

Welshmamma · 04/04/2017 22:29

Ten years isn't long!! I have read about people who have lived with it for years x Pray for a cure x they are working on it x

Christinayangstwistedsista · 04/04/2017 22:31

She refuses to talk to anyone about it

victoria60 · 24/08/2021 15:42

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk guidelines.

MostlyOk · 21/02/2022 03:47

This is an old thread but it popped up in my feed anyway. My dad has had PD for about 5 years and has quite a severe tremor in his jaw and also his arm. The tremor in his jaw causes headaches so he gets Botox every 3 months for that. We did actually look into (legal!) cannabis and it turns out that you can actually get it through a private prescription. There are clinics in London and Manchester which do it and it costs around £35-50 per prescription. Within 30 minutes of taking it, the tremor completely stopped. Unfortunately for dad, when it wore off it made him feel quite depressed, so he came off it. For anyone struggling with tremors, it's worth a shot. The clinic we used was featured in a C5 documentary and was called Sapphire.

Gillypip · 08/03/2022 15:18

Hi everyone,
My father died of PD last year. He fought it for 10 years. He had PD dementia. My one piece of advice to anyone that has PD or has a parent that has it is to have an end of life conversation. Please find out what the PD patients want ie peg feeding, Ng feeding tube, etc as we didn't so we ended up making decisions for him. I still don't know if the decisions we made for him were the right ones.
Please don't put yourself through the heartache that I had and have the end of life conversation with your loved ones.

SunniG · 13/03/2022 08:11

Hi all

We need to realise PD is not life limiting you do not die from it. Some may have other complications that causes death or could actually be nothing do with PD.
Getting a diagnosis of PD can be very upsetting for anyone just like any other kind of diagnosis. However once tr initial shock is over it is important that you try your best to live your life, PD doesn't have to mean your life is over. You can still live a normal active life. If anything being active is so important with PD you breed to keep moving and exercise. This can slow the progression of the disease. Not only that exercise will make you feel better in yourself. Giving up and thinking your life is over will only make it feel like your life is over and put your life on hold. Treatment today has come on such a long way to help with symptoms. Having the attitude of not letting the disease beat you will help you get on with your life.

MistressWeatherwax1 · 25/06/2022 16:58

I know this is an old thread but it came up on active.

My dad's just been diagnosed with Parkinsons in his mid 60s. He has mild symptoms so far, mainly a slight tremor in his hand and sleep issues. The doctors have said they don't want to medicate him yet due to the side effects.

Can anyone give me advice on where to read up about this? The medical side, what we can do to help him and any books/blogs on living with it that might help us understand a bit more.

Hairyfairy01 · 25/06/2022 23:02

Well said Sunnig. The Parkinson's society is a good resource for further info.

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