By Peter Cook, Trustee of Parkinsons.Me.
Like all medical diagnoses, Parkinson’s is a bit of a downer.
For me I went to my GP for something unrelated. She said I wouldn’t worry about that, but I am concerned about the tremor in your fingers, I think it might be Parkinsons. At that time it was a mild wobble on the 4th finger on my right hand, which I had hardly noticed. It was another couple of years before I had a diagnosis as initially the consultant I saw could not be sure if my condition was benign essential tremor or not. I pressed eventually for a DAT scan, which showed the conclusive lack of dopamine eliminating BET. In a sense it was a relief to know what I was dealing with and although my symptoms gradually worsened, I was given medication to slow the inevitable decline. I was unfortunate that two initiatives for early help failed. Firstly an appointment with the Parkinson’s nurse, and secondly a Parkinson’s UK information seminar called First Steps.
I did take up the suggestion of PD exercise classes at Bosworth clinic which educated me in the importance of physical activity for the condition. But as it was for me a 90 minute round trip to Cassington I cast around for something nearer to home. This was when I first met Ewan, who was doing the ground work for Parkinsons.me to venture into group exercise. I met him at the Engine Room gym which at that time was a likely venue as they were enthusiastic about the project.
I continued to attend Bosworth and really enjoyed the experience. Exercise in a group is so much better than exercising on your own. There is a group dynamic which is due partly sharing a common enemy and partly team spirit and encouraging each other.
During this time all the available energy of P.me was focused on the garden project. There was a grand opening event at which I was asked to consider becoming a trustee. I agreed to attend a few trust meetings to gauge whether I had a contribution to make. The timing was good and at forthcoming trustee meetings I was able to add my voice to the call for the embryonic MoveMe scheme to be advanced. After a few months I decided that being comfortable with the way things were approached it was time to sign up. I became the first trustee with the condition.
MoveMe is amazing. One main philosophy of P.me is family support and this has become an essential part of MoveMe. Whilst the need for specific PD exercise is met, there is also an added dimension, the opportunity for drivers, friends and family to sit and chat for an hour over coffee in an adjacent room. This has proved to be a great forum for sharing joys and frustrations of living with Parkinsons. When the class is finished, everyone is welcome to linger for more coffee and chat and the room fills up.
Move Me is run by Jo Preston who is an NHS specialist physiotherapist. She works us quite hard but always with a smile. We have had to hit the pause button for group meetings because of Covid-19, but Jo kindly created 4 videos for us to use at home to help us continue with our personal regime. Just today she has added two more videos. How kind is that?
In short the charity has proved to be a source of encouragement to all comers. PD has many different facets and symptoms and each person has a different combination to any other. What we all share is a search for ways of coping, or living well with Parkinsons, whether patients, carers or families. Having a charity which helps us share our individual struggles is a huge help in this quest.