Admin
Mar 30, 2018

Need to share your thoughts with others who understand ...

7 comments

Edited: Apr 1, 2018

 

 

 

Margaret
Apr 2, 2018

To get the ball rolling with this thread I'll contribute and would love to get your thoughts?

How do you balance the pre PD you with the person you now are who may need assistance from your partner within your relationship? I do worry if I'm honest. I don't like the way I must look when I can't pick my fork up to eat and my husband automatically feeds me. I don't like that there are times when I can't get dressed easily so he automatically helps me. These episodes although not daily yet give me a terrifying flavour of our future. When we met a long time ago I was a vibrant, determined young woman and that is an element of my sense of self that is very important to me still 20+ years later. To lose my independence must change the very essence of who I am surely? I am reassured regularly that my fears are unfounded but I can't help but feel like I'm relinquishing an integral part, one might say the attractive part of me to PD and feel sad for how this will make my husband feel going forward. How has your diagnosis and experiences of PD changed the dynamic of your relationship?

Admin
Apr 3, 2018

Thank you Margaret for your fabulous contribution and insight. I’m absolutely convinced that everyone’s relationship evolves as the journey with Parkinson’s continues. You’ve raised so many interesting points and questions. It will be fascinating to see how we can support each other by sharing our personal experiences and thoughts. Take care and best wishes.

Lor5
Apr 3, 2018

Hi Margaret, i understand your dilemma completely! since progression really began to bite 4 years ago I can feel the shift in our relationship; not that we’re not as close and tight as ever, but he is the one who sees me at my worst, in fact the only one, as I still try to put on a show for others! I hate having to ask him to do things that I can’t, it kills me to have to sit while he cooks tea, because my legs don’t allow me to stand and my coordination’s all over the place, but he does it willingly. He waves off my guilt but I know its an extra pressure on him! When I shuffle around in my dressing gown because getting dressed is impossible when I’m off, how can he look at me the same as he did?; again he dismisses my fears but I can’t help but ask the question! The times when I’m on and ok are much as they always have been and I have no qualms about us working through this together, but it hurts that so much of our life has changed and that I’m so different to who I was. I hate being so dependent on him, emotionally, physically and financially but he shrugs that off too! Tjose time when PD takes over I cant help but feel he’s losing out but thankfully he doesn’t agree!

 

Margaret
Apr 3, 2018

So interesting to hear other pwp perspective on this. PD challenges us in so many ways. It would be good to hear how those that live with us perceive the change and how they cope emotionally as well as practically with that change. Also how do they manage our fears and concerns? I would be unhappy if I thought my husband couldn't be honest for fear of upsetting me. I am reassured all is well but nevertheless PD has brought about changes I could never have previously envisaged.

Lor5
Apr 3, 2018

following my post earlier today, it was amazingly cooincidental that my husband arrived home this evening full of plans for his birthday in June. They involve a trip to London to see a show we have long awaited. Such trips to London have been a part of our relationship for 32 years however; last December I had kind of decided that I couldnt do it again, certainly not the underground anyway, as I had been scared stiff and very anxious! Anyway he sat me down and before explaining his plans, asked me how I felt about our June trip to London...... at which point I began to cry! I think this perfectly underlines the changes to our relationship.....he now,leads where with such trips I always did......he does the research etc.....he plans for my needs and considers me every step of the way.....BUT I DONT WANT HIM TO HAVE TOO! Anyway, to cut a long story short, we will go but do it in a different way, a far more costly Way but one not including the underground! I will struggle, I will be anxious beforehand but I will do it!

Margaret
Apr 4, 2018

I can totally understand your fears with this. It is one of my issues too. We have been discussing something for next year. Since my diagnosis I haven't flown long haul and I can't help but feel the panic in the background. Equally I don't want to not do these things. What you have said about a new way although more expensive is more than worth it. I hope you both have a great time.

Mary
Apr 11, 2018

My husband was diagnosed with PD 19years ago at the age of 49. As time has gone on we’ve been less able to socialise as a couple, although Phil has always encouraged me to continue meeting up with friends for a coffee and chat. This has been important for my own well-being and in turn for our own relationship.

Phil had DBS surgery last July and since the stimulator was switched on six weeks later he’s been much more active ( we play tennis at least twice a week!) and he goes to the gym. His quality of life has definitely improved and at present has been able to reduce his sinemet by half.

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