My Parkinson’s journey – chapter 1

In Oct 2016 it will be 3 years since I was diagnosed with Parkinson’s disease.

At that time, I had very limited knowledge of Parkinson’s – I thought it only affected old people and the only symptom I knew about was a tremor. I’ve always been a fairly reserved, private person, so if you’d have told me then that as I approached my 40th birthday, I would a) have Parkinson’s, b) be helping to run a Facebook group for people with Parkinson’s, c) be writing a blog, honestly, my reaction would have been “You must be joking! Never in a million years!”

I was 36 when I was diagnosed. Like many others (I’ve since discovered), diagnosis took a while – 10 months in my case (the longest 10 months of my life). I’d had other symptoms for a while (such as my writing getting smaller and finding it hard to write) but I hadn’t really thought anything of them. When my right hand started shaking when I tried to pour something out of a bottle, that’s when I knew something was wrong. That’s when I went to see my GP who referred me to a neurologist.

I’d been feeling more tired than usual for a while. Eventually, I started feeling exhausted and I didn’t know why but I just didn’t have as much energy to do the things I used to do. There were several appointments, scans and blood tests. I knew I wasn’t myself and I found it extremely frustrating and difficult not knowing what was wrong.

By the time the day of my diagnosis arrived, all I wanted was for someone to say “This is what is wrong with you and this is how we’re going to treat it.” That day, I distinctly remember being convinced that would be the one thing I wasn’t going to hear. I honestly thought I would be asked more questions and sent away for more tests and that I would come away none the wiser.

I couldn’t have been more wrong. Parkinson’s had never even crossed my mind (due to my mistaken belief that it only affected older people). So to say I was completely shocked is an understatement. However, in amongst my feelings of upset, confusion, fear and shock, was relief. I wasn’t going mad! There really was something wrong with me. At last an explanation for all my symptoms.

I was prescribed medication that very day. Previously, I hadn’t been able to wave my right arm/hand. I remember not long after, being excited about the fact that I could wave!

I can honestly say that the first year after my diagnosis was the most difficult period of my life, but eventually I started the acceptance process. I was desperate to skip that part and just start getting on with my life, but for me, it was a slow, painful process. I remember three months or so after my diagnosis, I thought I had come to terms with it. Again, that couldn’t have been further from the truth. I went on a resilience course at work and we worked in pairs on various exercises. Luckily I was paired up with a really close friend, as I ended up sobbing my heart out!

I learned the hard way, stress really aggravates my symptoms. The year after my diagnosis coincided with a time in my life which was challenging and stressful for other reasons – aside from being told I had an incurable, degenerative neurological condition. At one point all I was doing each day was going to work, coming home so exhausted I could barely lift my hand to put my fork in my mouth to eat my dinner, before going to bed, then getting up and doing it all over again. Then one day I started to take control and asked to reduce my hours at work. In hindsight I think that’s when I started to realise I had to accept things had changed and I had to do whatever was necessary to look after myself. It was the beginning of a long and challenging journey of acceptance.

More about that another time. I’d like to end my first blog (still can’t quite believe it!), by sharing some lessons I wrote about six months ago. I think this will give you an idea about where I am now on my Parkinson’s journey.