Parkinson’s with a Twist, from Sussex

Me on the Dorset Coastal Path

Me on the Dorset Coastal Path – July 2012

This is my first blog – February 2013

About me – married with two grown up children, a daughter in Australia and a son in London. I live in Sussex, England, enjoying retirement after working as a primary school teacher for many years.

Two months ago I was diagnosed with a “dystonic presentation” of Parkinson’s. I decided that I would like to have a blog, partly to keep a journal for myself and, hopefully, to help those who receive a similar verdict and think “help, what happens now”.
I realised something strange was happening when after swimming half a mile each week for decades it was becoming much more difficult and there was a feeling that the water was pushing me more sideways, just getting older I thought. Then I became aware that my left arm didn’t seem to know what to do when I was walking, I began to copy the person in front of me and ridiculously my left thumb and little finger kept joining together. People began to ask me if I had hurt my leg as I seemed to be limping. Initially no-one else really noticed and I became expert at hiding any problems. It was only when my daughter was home from Australia that she began to voice concerns. After that I developed a slight tremor so decided maybe I had better go to the Doctor. A whole battery of tests, MRI scan and lots of questions from a neurologist eventually led to the symptoms being given a name, not one I knew anything about but I realised I would need to find out more quickly as I was due out to see the lovely daughter in Oz two weeks later. I decided that I didn’t need to take any medication yet, there would be time to consider that more when I was back in the UK.
With fear and trepidation we phoned our travel insurance company, we were delighted that the additional premium was quite small, we could go! I luckily found a brilliant neuro physio who gave me some exercises to do and photographed me doing them on my iPad so I wouldn’t forget them.

One of the recommended exercises. One of the recommended exercises.

We had a wonderful month away, based in Melbourne but travelling to lots of places including Tasmania, Sydney and friends in Echuca. The sun shone, I felt well and we did everything we planned. The only thing I was a bit wary of was swimming in a 50 metres pool which was more than 2 metres deep!
Since the diagnosis I have told my family and friends about the Parkinson’s, all were quite shocked but incredibly supportive. It’s a bit of a conversation stopper so I have started to send a brief email before I meet someone that I haven’t seen for a while.
Since my return home I have started pilates and a body balance class plus keeping up with walking, badminton and a bit of swimming. I have only read information from the Parkinson’s UK website as some of the others are a bit depressing and I don’t think I am ready for that!
Next week I have my first visit to a Parkinson’s nurse when I hope to have lots of questions answered and find out more.