I would like to invite you into my thoughts and feelings on a subject that affects my life on a daily basis. When I thought of setting up this blog, it was mainly to help me come to terms with the cards I’d been dealt in my life.
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.
Its 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 bonus if it does…. What a lovely community to be a part of. So positive and forward thinking and so much talent there too!
My name is Shelley, and I am 58 years old. I’ve been married for 35 years now.
Wow, that’s a long time!. I have three daughters and six 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 thats 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 a few 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 got a very bad tremor. It like 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.! The first time I went to see the neurologist about my tremor I saw him for about five minutes and I was told that it probably was ‘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, certain blood tests and was then sent to London to see a top neurologist, who suggested I should have a Dat-scan.
I was finally diagnosed with Parkinsons. I was told that three neurologists weren’t convinced of the diagnosis until they had the results of the dat-scan.
I believe my Parkinson’s began in my middle to late thirties. That was when I was getting symptoms of the disease. Unfortunately having Charcot Marie Tooth disease, I thought the symptoms were from that.
Wow! I really couldn’t believe my luck. Not one but two diseases.!! Probably, thats why it was so difficult for them.
I must admit , to start with I went very much into myself. I’m one of these people who has to get things sorted and then move on, which I think, personally, I have.😊.
Being able to speak to so many people and hear other peoples 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. 😊.
I’d like to share with you on this blog the ups and downs of being me.
N.B. I also have been suffering now for many years with Chronic Pain. It’s been attributed to my conditions I have had over the years, but just recently I have been diagnosed with Fybromyalgia , not only that, over the past few years have also been suffering chest infections , every three months . Until I recently was told I have asthma / COPD, and the menopause . What can I say ? Just taking each day as it comes, 🙂 OH AND I’VE JUST HAD DBS ON THE 9th MARCH 2020,………
Thankyou for reading 🙂