EPS
Jan 17
Discussion
Everybody’s journey with Parkinson’s is different, although without exception we all experience the same thoughts and emotions at some point.
By reaching out to gather information and by seeking support we are collecting the tools we need to embrace the challenge before us. By building this community @Parkinsons.me we want to help those affected by the ripples of uncertainty created when someone is diagnosed with PD. I am sharing my journey with the hope of reassuring just someone that they are not alone with their thoughts. I’m a talker, and I think the talking has helped me process the changes that PD has brought to our family’s lives. I’m also an incredibly lucky person who has always been able to reach out to those close and take them into my confidence. Even at the first sign of Ewan’s symptoms I had enlisted my family and close friends as my army. I needed them at that time as much as Ewan needed me. At first he couldn’t understand my openness but latterly he gets it. However you deal with your challenges is the right way for you. Mine is just one way. I would however advise you to find someone you can trust, someone who will listen and allow you to voice your fears and frustrations. If nothing else they can look back with you and see how far you’ve come. I gathered so much information in the early days that I had a diagnosis before the consultant did! It was the wrong one as it happens but when I was researching I was busy and doing something constructive. Ewan on the contrary never typed his symptoms into “Google”. He dealt with things by trying to ignore them, almost as though they might disappear. It was actually quite nice to pretend with him sometimes that everything was normal. His symptoms became much more noticeable around the time of his diagnosis. For two years he’d carried on as “normal” to the outside world. It sounds silly but it was almost a relief when we knew what we were facing. He was no different walking out of the hospital than he had been when we walked in that day but something felt very final. I guess it was the end of the wondering. We were lucky to have a consultant who delivered the details of the condition without drama. She offered huge support and gave us lots of information. Strangely though those brochures on Parkinson’s sat in the car for months and finally went into recycling! Ewan was still unable to discuss or acknowledge what he had been told with anyone but me. I think in early days I bullied him a little into telling people in certain circumstances. I find people are less curious if they know what’s going on. I hate it when people stare or come up and ask me what’s wrong with him… And they have! I do however understand how hard it is to disclose such personal information when you are still processing it yourself and have always supported his choices. And so our journey began…a mountain to climb with no map! I’m hoping to regularly contribute and welcome you to get in touch with me through the website contact page if you have anything you would like to share or discuss.
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?
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.
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!
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.
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!
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.
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.