Next Steps – One Foot at a Time

Beach walking in Australia - January 2013

Beach walking in Australia – January 2013

Yesterday I had my first visit to the Parkinson’s Nurse at the Neurological Centre within the local hospital. Everyone I met from the Receptionist to the Nurse was pleasant and helpful and put us, my husband came with me, at ease. The main purpose I felt was for us to be able to ask any questions that we had thought of since the diagnosis, it’s difficult to think things through when you are hearing some rather scary news. We agreed that the disease was not making my daily life change yet and that I did not need to take medication. It was helpful to become aware of the variety of drugs available as that is something I do feel anxious about; I don’t like taking pills. The pattern of hospital appointments is every 3 months, the consultant at one and then the Nurse at the next.
I have joined Parkinson’s UK and look forward to keeping up to date with what is happening now and what may happen in the future, there certainly seems to be a lot of research currently underway.
I have completed the Pilates Induction course and can now enrol at classes in the local leisure centres. I felt that the lessons I have had have been particularly helpful with stiffness in my neck and shoulders. I did experience a few tremors during certain arm movements which was a bit unnerving but I need to get used to that!
One of the things I have noticed is that my toes on my left foot have a tendency to clump together. I am continuing to do exercises recommended by the neuro physio and have tried hard to use a small, spiky ball to roll under my foot to keep it opened out.
Foot exercise

Foot exercise

I have noticed that putting my left flip flop on after a pedicure is quite challenging! While in Australia I enjoyed walking barefoot through the sand as that seemed a good idea.
All in all I think the parting words from the Parkinson’s Nurse were very apt – “just get on with your life”.

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.