Parkinson's, and how to deal with it...?
Discussion
About 7 years ago, my mum divorced. She met someone else after a while which I was pleased about, as I was worried that she might struggle being alone after 30+ years of marriage. After a couple of years, she moved in with him, and things were great. However, over time she started to notice changes in his behaviour, and after investigation, he was diagnosed with Parkinson's.
Obviously Mum has been looking into it in-depth and trying to understand the impact that it can have on a person's life, and I'd never realised quite how severe it can be. My mum is a teacher (6-7 year olds) and works long hours. I think she's struggling to handle that and her partner who's succumbing slowly to his illness. He's on medication for it at the moment (a fairly mild dose as I understand it) as apparently once you ramp up the dosage, there's nowhere else left to go with it. He's 62 and retired, but I think he's struggling with 'not having anything to do' now being compounded by 'not being able to do the things he used to take for granted'.
His motor function is slowing dramatically, simple things like cutting up food are torturous for him, and often he'll sit there with staring, with a vacant expression; he doesn't even realise he's doing it. They have an appointment with a neurologist next week as he's also very tired all the time and falls asleep a lot. I worry about him driving as his reaction times probably aren't anywhere near where they should be; unfortunately this is still his only 'freedom' - to remove it would place an additional enormous strain on my mum. He doesn't drive at night though, he realises that he's not able to deal with that which is at least something.
Although he was diagnosed 3-4 years ago, it was only a year or two ago that he realised that other people had started to notice that something wasn't 'right'. I'm sure there will be others here who've been through - or are going through - looking after someone with Parkinson's and I want to be able to help support Mum as she's struggling to handle mood swings, diminishing ability for him to do things for himself etc. Even a few rounds of golf aren't do-able any more, something which he used to love and do regularly.
I recommended a couple of fora for her to look at (including parkinsons.org.uk) but she said that whilst they seemed to be well-intentioned, it actually panicked her a little seeing what's probably coming in the future. I think she's got enough on her mind dealing with the 'now'.
Can anyone recommend any good resources or ideas for me to point her in the right direction? I'm thinking that something that provides dialogue for her rather than just passively reading information might be better. It often helps to talk; indeed, that's what's spawned my post here as Mum's just had a bit of a 'need to talk to someone' moment on MSN with me (she can't talk freely, for obvious reasons).
Can anyone offer some advice? I don't really know how to help her in supporting him.
Obviously Mum has been looking into it in-depth and trying to understand the impact that it can have on a person's life, and I'd never realised quite how severe it can be. My mum is a teacher (6-7 year olds) and works long hours. I think she's struggling to handle that and her partner who's succumbing slowly to his illness. He's on medication for it at the moment (a fairly mild dose as I understand it) as apparently once you ramp up the dosage, there's nowhere else left to go with it. He's 62 and retired, but I think he's struggling with 'not having anything to do' now being compounded by 'not being able to do the things he used to take for granted'.
His motor function is slowing dramatically, simple things like cutting up food are torturous for him, and often he'll sit there with staring, with a vacant expression; he doesn't even realise he's doing it. They have an appointment with a neurologist next week as he's also very tired all the time and falls asleep a lot. I worry about him driving as his reaction times probably aren't anywhere near where they should be; unfortunately this is still his only 'freedom' - to remove it would place an additional enormous strain on my mum. He doesn't drive at night though, he realises that he's not able to deal with that which is at least something.
Although he was diagnosed 3-4 years ago, it was only a year or two ago that he realised that other people had started to notice that something wasn't 'right'. I'm sure there will be others here who've been through - or are going through - looking after someone with Parkinson's and I want to be able to help support Mum as she's struggling to handle mood swings, diminishing ability for him to do things for himself etc. Even a few rounds of golf aren't do-able any more, something which he used to love and do regularly.
I recommended a couple of fora for her to look at (including parkinsons.org.uk) but she said that whilst they seemed to be well-intentioned, it actually panicked her a little seeing what's probably coming in the future. I think she's got enough on her mind dealing with the 'now'.
Can anyone recommend any good resources or ideas for me to point her in the right direction? I'm thinking that something that provides dialogue for her rather than just passively reading information might be better. It often helps to talk; indeed, that's what's spawned my post here as Mum's just had a bit of a 'need to talk to someone' moment on MSN with me (she can't talk freely, for obvious reasons).
Can anyone offer some advice? I don't really know how to help her in supporting him.
Edited by Funk on Saturday 17th July 18:34
I'm sorry to hear this.
My Father had Parkinson's and it completely consumed my Mother's life for the 5 years he lasted from diagnosis until he died.
Having met many Parkinsosn's patients during this period it seemed to me that they fell into two categories. Those who succumbed to it and those who were determined to carry on as normally as possible. Obviously, the latter group seemed to have the longer lifespan...
I recently spoke to a lady who had electromagnetic field therapy, and whilst I don't know how successful it has been on her mental symptoms' her previously severe tremors were noticeably reduced and she said she felt much 'more alive'.
http://www.earthpulse.net/parkinsons.htm
It's easy to say this, but do make sure your Mum doesn't overburden herself and lets other take some of the load off of her shoulders.
My Father had Parkinson's and it completely consumed my Mother's life for the 5 years he lasted from diagnosis until he died.
Having met many Parkinsosn's patients during this period it seemed to me that they fell into two categories. Those who succumbed to it and those who were determined to carry on as normally as possible. Obviously, the latter group seemed to have the longer lifespan...
I recently spoke to a lady who had electromagnetic field therapy, and whilst I don't know how successful it has been on her mental symptoms' her previously severe tremors were noticeably reduced and she said she felt much 'more alive'.
http://www.earthpulse.net/parkinsons.htm
It's easy to say this, but do make sure your Mum doesn't overburden herself and lets other take some of the load off of her shoulders.
Edited by DocJock on Saturday 17th July 19:07
Funk said:
Thanks for the advice, I'll look into it. As for Mum, I'm trying to 'be there' for her, but I think she's struggling a little with it on a daily basis. She lives a fair distance from me, so it's not like I can 'pop in' and see her.
I know how you feel, I was 450 miles away.Make sure she takes advantage of all the Social Services help that her local authority offers.
It's little things like handrails, walking aids, a panic button and stuff that make things slightly less stressful on a day to day basis.
My Mum is in Scotland and they provided lots of help in small ways but the overall effect was a big help to her.
We run fitness classes for amongst others, Parkinsons sufferers to help with motor skills, propreoception etc and that act like "time out" sessions for their partners/carers, these are totally funded for the clients by Parkinsons UK. Your best bet would be to contact these as they will offer all the advice you could require. For both parties involved.
There is a lot of support out there with all the information you could require. Whereabout in the Uk is your mum? As I may be able to supply email addresses/contact numbers for you/her.
There is a lot of support out there with all the information you could require. Whereabout in the Uk is your mum? As I may be able to supply email addresses/contact numbers for you/her.
Thanks Swansea V6, she's in SW London. The mobility side of things has been stressed to them by the doctors and Mum does things that encourage him (let's call him 'D') to work at it. The problem seems to be that he gets frustrated that his body won't do what he tells it to. I would find that so difficult to deal with. One of the issues is that things have to be slowed down tremendously for him; for example, when we're eating together, we all ensure that we don't finish eating at a 'normal' rate, leaving D still eating for ages on his own. My mum and D went to a wedding a few months back and with everyone sat at the table, D couldn't eat because he couldn't cut the food. He also didn't want Mum to cut his food up for him in front of everyone; this is amongst friends and family who're aware he has Parkinson's and care for him deeply, yet he still felt uncomfortable with it. I can understand it must make you feel very incapable.
Whenever I've had them in the car with me, D's really struggled to plug his seatbelt in; whilst you or I can do it without having to see the socket, D's spatial positioning and co-ordination just aren't up to it. He'll often quietly ask me for help with it and it must be so disheartening for someone who's always been so self-sufficient. There's also a fine line to be struck between being over-helpful and letting him try and do it himself.
Just to clarify, at the moment his case is fairly mild compared to some, but it's progressing. It's more the emotional side Mum's having trouble with at the moment. He's been having mood-swings which I think she's finding hard to deal with. She's said that all the people they've seen for treatment and diagnosis have been brilliant and I'm sure they're doing everything they can. There are just some elements of it that are harder to deal with, mainly the emotional side of things. It's hard knowing that things will only continue to get tougher from here on in.
Thanks for the advice so far folks.
Whenever I've had them in the car with me, D's really struggled to plug his seatbelt in; whilst you or I can do it without having to see the socket, D's spatial positioning and co-ordination just aren't up to it. He'll often quietly ask me for help with it and it must be so disheartening for someone who's always been so self-sufficient. There's also a fine line to be struck between being over-helpful and letting him try and do it himself.
Just to clarify, at the moment his case is fairly mild compared to some, but it's progressing. It's more the emotional side Mum's having trouble with at the moment. He's been having mood-swings which I think she's finding hard to deal with. She's said that all the people they've seen for treatment and diagnosis have been brilliant and I'm sure they're doing everything they can. There are just some elements of it that are harder to deal with, mainly the emotional side of things. It's hard knowing that things will only continue to get tougher from here on in.
Thanks for the advice so far folks.
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