I would like to share my experience of the ‘Fighting fit’ pilot – a residential weekend programme for working age people with Parkinson’s – which took place this weekend. There was packed programme*, however in this blog, I’d like to focus on just a few aspects of the programme.
While I have made connections with people with Parkinson’s online, this was the first time I had spent in person with a group of people with Parkinson’s…
‘We’re in the same boat’
It was so great to be with others and feel ‘normal’, because while Parkinson’s is a very individual condition and affects people differently – many of us: were taking meds throughout the day, have small writing – as well struggling to write (which made doing the usual post it note writing a challenge but we worked well as teams), have dexterity issues, are slower at every day tasks such as cutting up food, have fatigue, quiet voices – the list goes on. That’s ‘normal’ for us. Which meant that everyone was empathic and everyone understood without having to explain. It was also great to chat to a few partners / friends of people with Parkinson’s and understand their perspective. Because Parkinson’s doesn’t just affect the person with Parkinson’s. It affects our loved ones too. It was also good to share our experiences of diagnosis, medication, living with Parkinson’s, hopes and fears… again the list goes on. It made me feel less alone.
Singing: my comfort zone
Singing is one of my favourite things. I sing in a choir and several of my previous blogs relate to singing. I always try to encourage people who tell me they enjoy singing, but think they can’t – to give it a go. So it was right up my street that there was a singing session. I really enjoyed it, partly because lots of the group joined in – even those who said they couldn’t sing, and even more importantly, everyone seemed to enjoy it. Everyone was certainly smiling when we sang together. A few people who had never thought of singing are thinking of joining local choirs. Which is great because singing is good for people with Parkinson’s.
Spinning right out of my comfort zone:
It’s five years since my diagnosis and while it’s certainly not easy, I think now I’m generally doing ok with the living the best life I can with Parkinson’s – acceptance, adjusting, growing resilient. And this weekend I shared some of the lessons I’ve learned through chats with others and in some of the sessions as appropriate.
But one thing I know I need to do is push myself to exercise. There was a lot of emphasis on exercise. In fact one suggested way of thinking of it was ‘like a form of medication’.
I do quite a bit of walking most days, but it’s not enough for someone with Parkinson’s. I learned that I need to be doing specific types to exercise to target my symptoms. I’ve always found exercise difficult. I’ve always felt uncoordinated and lacked confidence and this only got worse with my Parkinson’s symptoms.
However, I made a choice before I came, to push myself right out of my comfort zone and try all the exercise sessions this weekend. Having all these sessions designed for younger people with Parkinson’s was the perfect opportunity to take part and not feel self conscious about having Parkinson’s! On day one there was Tai Chi. It was gentle and slow and I didn’t feel too self conscious.
Day two, a lovely lady called Jackie had offered to do a couple of early morning demonstrations of using Smovey rings which is something which really helped her and which she is very passionate about. So I made an effort to get up early and was in the gym at 7am to give it a go. Thank you Jackie! The next exercise session was PD warrior – another lovely lady called Lizzie (also part of the Fighting Fit team) knew I was scared and so came to be my partner during this session and really helped me. I still found it very difficult but it really was easier with Lizzie’s support and encouragement. Lizzie also suggested that I might have a go at spinning in the gym, so added this opportunity at the end of the last session of the day.
Now spinning I found extremely challenging, but I actually sort of enjoyed it (well bits of it). I pushed myself as much as I felt able. When I stopped, my tremor started and a wave of emotion hit me and I cried. I was just so tired, but proud that I’d given it a go.
Well by the time it got to social activity for the evening – dancing – I was exhausted – given that I don’t normally do any exercise other than walking. I gave it a bit of a go, but I decided not to beat myself up for not joining in all of the dances.
The final exercise session was boxing the next morning – which is one thing I never thought I would try. Never say never! I surprised myself and I really enjoyed it and had fun laughing with my boxing partner Sue.
Thanks so much to Lizzie for helping me with exercise which is my biggest challenge and for inspiring me and motivating me. I’m not sure what exercise I am going to do yet, but I am determined to do something.
Like all things, you get what you put in. I certainly feel I gave as much as I could, and I’ve got so much from the weekend which I know will help me to continue to live well with Parkinson’s.
I have to say a massive thank you to all of the Fighting Fit team (Pat, Peter, Laurel, Sue and Lizzie) who put a tremendous amount of hard work, time and energy into preparing and running this weekend. Thank you also to all those who ran sessions and to Parkinson’s UK for supporting this. Finally thank you to everyone who took part. I learned so much from all of you and it was a privilege to share the weekend with such inspirational and caring and supportive people.
*Note: The programme included sessions on working with Parkinson’s, how technology can help, living well with Parkinson’s (medication, nutrition), psychological wellbeing, research and more. For more information visit the Fighting Fit website.
Living with Parkinson's 