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Parkinsons Disease

(43 Posts)
imoanruby Thu 01-Mar-12 20:18:41

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's very difficult..

Christinayangstwistedsista Tue 04-Apr-17 22:31:44

She refuses to talk to anyone about it

Welshmamma Tue 04-Apr-17 22:29:16

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

Welshmamma Tue 04-Apr-17 22:28:25

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

Blanky Tue 04-Apr-17 07:08:04

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.

Christinayangstwistedsista Mon 03-Apr-17 20:36:46

I'm worried sick about her

Welshmamma Mon 03-Apr-17 19:55:58

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

Blossomdeary Mon 03-Apr-17 18:50:20

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.

Christinayangstwistedsista Mon 03-Apr-17 18:23:24

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

Mu123 Fri 31-Mar-17 22:03:37

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.

Ohmywow Fri 31-Mar-17 21:52:10

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.

Welshmamma Thu 30-Mar-17 20:07:45

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 Thu 30-Mar-17 13:46:25

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 Sat 25-Mar-17 16:24:16

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!

Poudrenez Thu 23-Mar-17 16:59:53

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 Thu 23-Mar-17 11:49:38

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!

2014newme Wed 22-Mar-17 16:47:12

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

Poudrenez Wed 22-Mar-17 16:43:07

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.

flowers to everyone dealing with this.

Welshmamma Fri 10-Mar-17 13:03:45

Hi my mum was diagnosed about four years ago. She was the liveliest and busiest woman I know!
Last three years has slowed down so much! It's awful. She doesn't have typical Parkinson's, no tremor. She has more big movements. Which are bloody awful 😕 She gets really embarrassed and it's affected her emotionally. She used to have so many friends and have a busy life but this is no longer the case.
We go to aqua aerobics twice a week as she feels better for going. I think she is amazing, she is always exhausted as she sleeps little but is always pushing herself to keep doing stuff.
Not a nice disease ..... I feel like I'm losing my mum xx

HokeyCokeyPigInAPokey Fri 20-Jul-12 11:10:59

My mum is quite a nervous person though wrinkly and wouldn't want to hold anyone up.

She is coming to terms with her diagnosis slowly but is still finding it very difficult 18 months on.

Stitchthis Tue 17-Jul-12 07:42:34

I'm due to see my pd nurse soon. I'll ask about that course. Sounds good. Thankyou.

wrinklygran Wed 11-Jul-12 11:02:48

It is best in my view to be up front with Parkinsons, everyone knows someone with it, and so if you admit that this it is why you are holding up the supermarket queue while you fish for change in youer purse, you will get a sympathetic response rather than an impatient one, and often an offer of help pushimg the trolley to your car.

I recommend trying the Expert Patient Programme (in our area it is called Living With Long Term Health Conditions) which is a 6-week, half a day a week free course for people with Long term conditions such as Parkinsons, MS, COPD etc., and their carers.

I did the course and subsquently trained to be a volunteer tutor. It helped me come to terms with my condition. I learned how to cope with the symptoms, deal with my medical team and communicate with carers.
All the participants felt physically better and more positive. Contact your NHS community health team or your GP may have details

Stitchthis Thu 05-Jul-12 23:45:52

I'm still here. Hope you're all ok. Can I make a plea for not Ignoring tremors etc? Acknowledging them is better - it means you don't worry about anyone worrying about you. Trust me.

Pd is shit. Definitely. But it's not the end. I hope your parents are coping. It takes time I was dx in 2008 and I'm still getting my head round it. But it's nothing to ignore, it's so all pervading. Talk about it rather than try to ignore it. Rant overblush

agora1 Mon 18-Jun-12 06:45:37

No problem, hope it's useful.

HokeyCokeyPigInAPokey Thu 14-Jun-12 18:17:33

Thank you agora1 i really appreciate your response, i will google LSVT this evening.

agora1 Mon 11-Jun-12 06:56:14

I'm not in the same position but do work with people with Parkinsons.

In regards to the drooling and speech issues a speech therapist can help. There are a couple of behaviour modification techniques for saliva control, essentially the person with PD becomes less aware of the saliva in their mouth and doesn't swallow as much as they should, SLTs introduce techniques which encourage them to swallow more.

For speech the gold standard is the Lee Silverman Voice Therapy (LSVT), lots of information online if you google. It's an intensive form of therapy designed to work on the speech system and it does work. It is actually better to start this form of therapy early rather than waiting for any possible deterioration of speech. Speech therapy is open referral so your mum does not need to go through consultants etc. to be referred, she can do it herself. Where I work there is a waiting list of a year.

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