Hello there. I would like to introduce myself. Sounds strange, as this is something I would never have dreamt of doing until I came across the world of Parkinson’s with the help of a little technology. It’s true! I’m normally a ‘suffer in silence’ kind of girl. So when I first began sharing my life and feelings, I wondered how it would help not only me but also other people in my situation. That’s a real bonus if it does.
I’m so happy to be blogging for Move 4 Parkinson’s, as I was first introduced by a friend with Parkinson’s who now lives in Ireland. What a lovely community to be a part of. So positive and forward thinking and so much talent there too!
My name is Shelley, I live in the UK and am 51 years old. I’ve been married for 28 years. Wow, that’s a long time! I have three daughters and five grandsons. My family is my world and I know they are with me all the way. I’d first like to take you back many years. I can’t say I ever remember being ‘normal’ (whatever that’s supposed to mean!), I always had aches and pains. I also had a slight shake in my hands. But for me, that was ‘normal’. My mum used to say that I actually shook as a baby in my crib and as a child, I was always being taken to the doctors for various aches and pains but mum was told it was just ‘growing pains’.
Then fast forward to when I was in my late twenties. I was married, just had my first daughter and was working part time. I started to suffer with pains in my hands and arms, my legs and feet. I was finding it very difficult to cope. I was sent to see an orthopaedic surgeon, who then sent me to see a neurologist. I had various tests and an operation for Carpel Tunnel syndrome. Then I was diagnosed with CMT (Charcot-Marie Tooth disease). I was given medication and told to “go live my life!!”, which I tried to do as best I could. Finally, after much deliberation and sadness, I had to retire from working as I simply could not go on any more.
Then about five years ago I had a bad bout of pneumonia and my heart had to be stopped twice to reset it. A few months after that, I developed a very bad tremor. It came overnight, down my right side. Thinking it had something to with my CMT, I just carried on coping, until my family forced me to visit the doctor again.
The first time I went to see the neurologist about my tremor I saw him for about five minutes and was told that it was probably ‘essential tremor’. I was put on more medication but had to re-book an appointment because I wasn’t responding to treatment. I was then sent to another neurologist who carried out more tests. I had an MRI, some further blood tests and was then sent to London to see a top neurologist, who suggested I should have a DaTscan. It was last year in August that I was finally diagnosed with Parkinson’s after being told that three neurologists I’d seen weren’t convinced of the diagnosis until they had seen the results of the DaTscan.
Wow! I really couldn’t believe my luck. Not one but two diseases!! That’s probably why it was so difficult for them to diagnose me earlier.
I must admit, to start with I went very much into myself. I’m one of these people who likes to get things sorted and then move on, which personally, I believe I am now doing. Being able to speak to so many people on Parkinson’s forums and hear other people’s stories has helped me so much. I always think of my glass as being half full. Smiling through is the only way to go.
Sorry, no more clichés. 🙂
About the Author:
Shelley Edwards Shelley is from Norwich in Norfolk, has been married for 28 years, is a mother of three and grandmother to five boys.
After being diagnosed with Charcot-Marie Tooth disease in her 20’s and
diagnosed with Parkinson’s in August 2012, she is still smiling with the support and positivity of her family.