Ann and Mike participated in the Fighting Fit weekend in Leeds from 8-10 November as partners of Matthew and Jane, people with Parkinson’s. In this article they give a partner’s perspective of the Fighting Fit programme.
Firstly, Ann says:
We found out about the Fighting Fit weekend quite by chance when looking online for support and advice. Serendipity.
Matthew was diagnosed 9 years ago and recently retired on medical grounds. I took early retirement to spend more quality time with him. The question on both of our minds was “So what do we do now?” We knew we wanted to make some positive changes but weren’t entirely sure what we should do or how we should go about it; we hoped the weekend would point us in the right direction. It certainly did that, and more.
There was so much on the schedule covering lots of topics we didn’t know we need to know about! There was a good balance of talks from speakers, discussion groups and practical activities. Throughout all of it there was a sense that we were in a safe space with people who understood because they have a shared experience of PD. It was particularly beneficial that there was time to reflect on the impact of this condition on partners as well as our PwPs.
So, we came away feeling really positive and with a plan for how we are going to go forward with this in our lives. Not only that, we met a fantastic group of people who we know we will keep in touch with – a support network of new friends with a common goal, to live well with Parkinsons.
Next, Mike shares his thoughts:
At the start of this programme, we were asked to write down our hopes and fears for the weekend. It wasn’t something I had really considered.
My wife, having been ‘medically retired’ at 50, as a result of her progressing Parkinson’s disease generally plans all of our trips. My excuse: I throw myself into work as the sole breadwinner and eschew all responsibility for any social planning.
It works for me!
So, when she mentioned the Fighting Fit weekend, I went along with it. I encouraged her participation and intended to support her in any way I could. I took my laptop and outstanding work projects hoping to spend some time catching up and perhaps enjoying a beer or two with the expected two or three other Parkinson’s partners.
I grossly underestimated the emotional, physical and psychological impact that these two full days would have on me. There were seven partners, both spouses and family members who attended and had the opportunity to discuss issues away from their partner.
I found the taster sessions of PD Warrior, Boxercise, Pilates, singing and dancing all extremely challenging but also really enjoyable and rewarding. The opportunity to talk frankly, or just listen, to others who have had similar experiences and lived alongside Parkinson’s disease has been emotionally uplifting and very challenging. The unique combination of those diagnosed and those providing the psychological and physical support has been gratifying. This combination has been the perfect setting for the bonding of strangers with a shared goal; that of coping with, normalising, coming to terms with and learning to live full lives with Parkinson’s disease.
My hopes and fears? I feared an emotional and tearful release, and narrowly avoided it and hoped for a few sly beers, which I did not manage but I am confident that friendships forged on this weekend will last into the future for many years and I am pleased to have a new network of like-minded individuals who understand what its like to live with or alongside Parkinson’s disease.
Do not miss the opportunity to be a part of something truly life affirming both for you and your partner.
With thanks to Ann Sullivan and Mike Phillips