I was asked who I lived with by a specialist the other day and the response when I said I lived alone was a prolonged silence then on to the next question. I also constantly read about the importance of involving friends and family and carers in all aspects of living with Parkinson's.
Now (apart from the simple advice sheet on living alone with PD) I wouldn't guess it from reading the current literature, but I know, in reality, that there are people other than me living alone with Parkinson's so I'm just wondering how people manage the expectation that everybody has a spouse/ close family/ strong support network? Or maybe it is just me :-Z
I live alone and when attending appt's with someone new yes the question "do you live alone ?"
I reply "yes"
Sometimes I hear a "ahh" sound as they look at me in a sympathetic way, then write it down, then just carry on.
Yes I think its great to have a supportive family and friends, partner but not so great if you happen to be with someone who shows you no respect, does not have your best interests at heart.
My own doctor views it as positive he says it keeps me going , keeps me active, as I have no one to make that cup of tea, dinner etc so whilst I have struggled a bit with the pain issue but thats getting sorted after being diagnosed in 2008 still coping at home.
Not sure that helps but not everyone lives in an ideal world and living with a partner having a family nearby does not necessarily mean you get more support.
You make total sense and I think I know that what you say is true in my less grumpy moods. The challenge, I suspect, is to ban myself from morning moaning via the forum - or at least make sure I think for a while before I click.
yes, I too live alone and struggle a bit with the responses and expectations of others. I am older than you and now live in a retirement village, which is good as others here have similar issues. I have a few close friends but no family in touch. I still miss my husband though, I was diagnosed after he died so I don't know how he'd have coped, but just having someone close to share it with would be good.
I just wanted to say be gentle with yourself. Life has dealt you a cruel blow at a young age. I know all about trying to keep positive and how important that is , but I sometimes find the remorseless positive thinking on the forum a bit oppressive. That's not a dig at Tee Hee who's post I also found helpful. But there is grieving to be done too. If you find that an occasional moan lets off some steam and sadness I hope the forum is a good place to put it, many of us will be right behind you
A friend (who has Parkinson's) lives alone because her husband sadly died a few years ago, This was before she was diagnosed and while she misses him dreadfully, she also feels that he could not / would not have coped with her diagnosis and that in some odd way, living with Parkinson's while trying to protect her husband from the knowledge that she had the condition would have been more stressful than living alone with it. I suppose that's the thing, everybody's situation and experiences are their own and trying to act out and live up to society's idealised expectations (whatever your circumstances) is exhausting and even destructive because you end up living an emotional lie (if there such a thing).
I agree, the concept of unrelenting positivity also suffocates me - but we're all different I guess. I also genuinely appreciate the current and previous posts from people such as yourself and Tee Hee. Your comments somehow normalise things and I don't feel so alone or so bad for moaning - I just need to learn when to stop :) balance in all things (even eating cake as it turns out :-/)
Take care,
Someone once said to me if you cannot moan on here where can you, I agree. I try and be positive some ? most of the time but its equally as good to hear no ones life is perfect or all bad.
Post what you feel there is always someone out there to support you and always someone who is going through the same low spot.
I live alone and my PD nurse always starts her report with " .....came alone" which is similar to the pregnant pause others experience. I feel like someone's doctor that the plus side is that you can't go down the path of dependence without a fight whereas it would be so easy to when the random symptoms strike requiring yet another change of game plan. My mother-in-law had PD and ran her poor old husband ragged.
You certainly wouldn't realise from these reactions that single households are in the majority
My experience is that the o ne thing you must do with PD is to keep moving which is the plus of having to do it yourself
I'd love to say I drew the picture Fulmerbucks, but I found it somewhere. It seems to reflect me embarrassingly accurately :) - grumpy and a little rounder than I was a few years ago with an alarming new-found ability to speak (or write) first, then process what I've said with varying degrees of mortification sometime later.
I can't find any information about the wonderful combination of hormonal fluctuations and Parkinson's, but following the thought processes of a few of the posts here, I'd have to say that if I had've been in a long term relationship a few years ago, it would have taken a saint to stick with me even this far - so probably best that things are as they are.
I appreciate all the posts here, I was beginning to feel like the odd one out but clearly the 'pregnant pause' following an admission of singledom is widely practised.
And while I'm having a midnight ramble, my second least favourite reaction is ... 'at last you haven't got...'.
So many awful things are happening right now and I really cannot imagine how it feels to be in so many situations. The fact that others' lives are in a state of utter devastation, however, doesn't make me feel better or not better. To need others to be suffering to the degree that I feel comparitively lucky seems very wrong. I figure it's not 'top trumps' - that thought process doesn't seem to help, or even respect, anybody.
Anyway, I'll stop (I'm practising restraint) thank you for the replies, take care, Jx
Absolutely with you there Jackson. I sometimes hear myself saying "there are worse things" to preempt such comments, but that doesn't really help either. I've found there are not many people who can hear and accept how i feel without having to try and minimise it or add some "positive thinking". They are precious and I have to try not to overburden them.
i see in your pic a warm cuddly creature that's hurting and angry. It's managing to stay upright on some spindly pins too! Beaming metaphorical hugs your way. FBx
Thank you fulmerbucks- your reply made me laugh - always a good thing :-)
I was thinking about your 'ps' strangely enough. So many of us do it, we almost apologise for our opinions by declaring them to be our own. I do it all the time! I give an opinion and then say that it's only my opinion. But it goes without saying that it's my opinion by virtue of the fact that I said it. Ahhh, mid-night ponderings. Good old PD. Anyway, agreed, it's important not to overburden friends who really listen. I get so fed up with PD that I don't want to talk about it. I find it hard though, to get a balance between pretending it doesn't exist and becoming a PD bore. Any way, thank you for the smiles (if that makes sense). Take care. J :-)
Well you two,three? just to jump in with my view yep it is so annoying when people say things like," well at least you haven't got leprosy and live on an deserted island?" " yes, so should I be grateful I've got Parkinsons then ?" is my new reply...sorry? pardon, was that an apology, glass of Prosecco ? yes please, thanks.
However, as inappropriate as it may seem, I was sad when my ex hubby died 55yrs old but kinda felt elated I was still alive, but I am 55 so maybe should not celebrate too soon.
Anyway hope you are animals are in good spirits and not ready for the Abattoir just yet.
In fair spirits, though sadly given up spirits - and prosecco - due to my new found habit of sleeping anytime / anywhere if I imbibe (not sure that's the right word).
Still working (just) A small child I was working with laughed at me the other day - said I was shaking, then said he liked shaking too, he briefly mused that we could sit and shake together before moving on to his next topic of conversation.
Children's reactions are so much more straightforward and easier to deal with than most adults.
but in the context of so called motivational statements its obvious to get to the top of a mountain ( top of your game, or succeed) you would probably have put considerable effort in to achieve this. hence you did not fall there but you had to climb the mountain.
I put ??? really !!!!! as its obvious and hardly motivational in my view. Just my opinion voiced to J.
Yes can see that now and was wondering hence blue message. I realise from other posts, you funny, me a bit slow :) thanks for letting me know, now I know your humour , have fun. x
Agreed - my current bug bear (I have many :S) is gifts with motivational sayings. I have a tea towel that I can spend time seriously disagreeing with. Think I need to get out more :-) j x
