hi, iv found this sight very helpful my partner has had pd for 5 years and only recently has it become worse and she is struggling find my self asking are you all the time sometimes don't know if helping or taking over should be letting her get on with it and take a step back till she asks me for help ? she is only 48 years old and know its getting to her not being active our social live is being affected she wants to do things but then looks in so much distress then get frustrated that iv made her go out i want to be there for her. im younger than her and worried she may leave me because she thinks she will be a burden to her.
Do you think your partner has reached a stage where she may need a change in her meds?
Do you have a PD nurse you can talk to? How long until your partner sees the neuro again?
Don't forget the helpline number on top left of page.
Wishing you luck
I can only say how it is from the perspective of a PwP and an o/h who is my carer. I think I have put him through a full gambit of emotions, the intial diagnosis, the why me's, the horrible time trying to get used to the medication and of course any subsequent changes to them. The decision that I wouldn't let this 'thing' beat me/us and we would carry on as usual. But of course you don't, PD is with you all the time and soon makes its presence felt. What I would like to say to you is please don't go, you will never know how much you are needed and wanted.
My o/h has been my rock and put up with all of the moods that we PwP go through and like you, has been at a loss to know what, when and how to help. I can understand your partners frustration (oh so well!). The mind says you can do it but then the body goes and lets you down and who do we take it all out on, why you of course. Just be there for her when she needs you. The fact that you have posted here proves that you care and want to continue to care.
Carers are in the most difficult of positions, I can see that. All I can say is that you are much 'put upon', appreciated, needed and wanted. Make sure you talk about these fears that you have, I bet you'll find that she is just as scared that you will leave her!
Perhaps you could tell/show her your post here to start the conversation off?
Good luck and hang on in there. And also many thanks from a PwP to a Carer
thanks for reply very helpful her meds are being increased so hopefully it will help her ill always be her for her. i cant imagine what it feels like
no she doesnt have a pd nurse and nero is in jan feb time
Without a doubt the toll this condition takes on those you love is sometimes more than some relationships can stand. We are both very loyal and if anything it has brought us closer. However, it has been a very painful road, you must keep talking.All is better when you have shared. She is a lucky lady.
Remember that loss of independence and dignity is a nightmare.
Hi, I know everyone has different experiences but I can relate to your situation. I am about the same age as your partner and I know how difficult it is for my husband. I rail about PD limiting my employment, how people look at me in social situations, all of that but what I find most difficult is that I can never just relax, just sink into bed or a chair and feel all the knots leave my body, never. If I had 3 wishes, I would wish for a minute of that... 3 times. I feel on edge and I know I take it out on those I care for most. Thank you for your post, it has allowed me to see things from my husband's perspective. All the best.
Its not easy.One day in the supermarket my husband snapped at me because he thought I had put too many items in the basket he was carrying.He said "Ive got Parkinsons,you know".It wasnt that heavy.Later that day he went off to collect an office printer and when I offered to help him he said "I'm not an invalid,you know".
we tread a very fine line as a spouse/partner/carer/, and are Both affected by PARKINSONS )LOVE makes it a little easier cope with .Try and find things that make you smile ...
Hello careing partner .
You cannot possibly know what it is like to have Parkinsons I have tried hard to put myself in the same position but of course you can't .
My advice is to search the internet for as much information as you can . It is such a complex illness . Even when you love someone it can test you , but when a problem arises and you discover it is another one of the symptons of Parkinsons it helps to control your patience ...........
thanks i do a lot of research and always reading something im hoping to get on a course through my job as i am a carer everyone's advice has been very helpful