My journey with Gaucher & Parkinson’s

If you are reading this blog, no doubt you share something in common with me. Whatever the reason, I’m glad you dropped by. So pour yourself a cuppa and pull up a chair. We’ve all got a story to tell, some of amazing feats, accounts of wild adventures and personal accomplishments, but many share a similar tale to my own.

When my husband first suggested I write a blog, I didn’t know what a blog was, but I soon caught on to the idea and understood it was a great way of reaching out, offering support to other fellow sufferers and caregivers. For the first two years I wrote almost every single day, and found I was being followed in over 70 countries around the world. After writing at such a pace for two years, I reduced to blogging once a week for it was becoming a strain as my typing began to get very slow. The dexterity in my fingers is effected by the Parkinson’s, where once my fingers deftly flew across the keys, my typing skills would now shamefully put me at the bottom of the class!

At first I wrote enthusiastically finding many funny situations to relate since Parkinson’s can lend itself to humour. But the humour was short-lived as the disease progressed. I wondered how I’d continue to write honestly, yet in a humourous and positive light, and if unable to, should I consider possibly stopping altogether? After all, who wants to read about what really happens to patients diagnosed with Parkinson’s?

As time passed, my story clearly took a path of its own. I realised, were I to continue being honest, I would have to address some of the more serious issues I experience, courtesy of Parkinson’s. I assumed if the topics became too bleak for others to read, in particular people who have not yet reached this ‘stage’, they may very well not want to continue reading my blog. Strangely the numbers did not dwindle for anyone with Parkinson’s realistically knows what lays in store, and I suspect I am far from alone. I will continue to campaign, public speaking and writing for as long as I’m able. Creating a clear picture may not be pretty, it’s not what any of us expected our lives to be, but it is the truth. I see this blog as a journal of progression not dissimilar from a true life ‘in real time’ documentary following my journey, which may be the same as millions around the world – it may be yours too. So for now I wish you well, a good weekend, and hope to catch up with you next Friday. Perhaps you’d like to read what I have to say this week in The Huffington Post.