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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.

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8 thoughts on “Parkinson’s with a Twist, from Sussex

  1. Well done Mum! It certainly didn’t stop you walking 20kms a day from Burton Bradstock to Abbotsbury, including up Golden Cap (propelled by cream teas). I’m looking forward to reading your blog. Lau xx

  2. Stay positive Elspeth, focused & informed. Best foot forward! (literally!) look forward to reading more after your visit to specialist nurse.

  3. Well Elspeth, Maggie and I were very sorry indeed to hear your news but as we oldies creak and groan and complain, you are already the positive shining light to us all. Peter will be marvellous and we, with all your friends, will be rooting for you, giving you support when you want it and thinking of you – always.

    Love to you,

    Nick and Maggie B

  4. Hi Elspeth, I asked my pilates teacher why pilates is so good for people with Parkinsons. She said it is good for brain/muscle co-ordination. She runs a class especially for people with the condition and has seen some very positive results. You are on to a good thing there. Don’t forget Anne-Marie has some fantastic pilates equipment you could try.
    Love from Paul & Caroline x

  5. Love your blog Elspeth! You are an inspiration to us all. I’m proud to be one of your many friends.
    Love Anne x

  6. It was lovely to see you on Saturday Elspeth. We are so impressed with your good grace and positive attitude to your horrid diagnosis. I will watch your blog with interest and wish you a lovely visit to New York and the beautiful High Line garden. You will love it I know. Our very best wishes – Maureen and Alan

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