About me

I have been writing poetry and stories since I was a child, and a love of reading was instilled in me from an early age. I am passionate about writing, and hope you enjoy the books I have written. Whilst most of you sleep soundly in your beds, like many Parkinson’s patients, insomnia dictates, so during those hours that sleep eludes me, the house is tranquil and quiet, an atmosphere perfect to immerse myself in writing. My life has been a series of strange events, which have without doubt contributed to my creativity. To publish anything is to bear one’s soul to the world. It is to stand naked and let everyone see who you really are. I have poured my heart and soul out on paper and I hope to share this journey, immersing you in a story, capturing your attention and firing the imagination. Through my writing and public speaking I hope to bring greater awareness to the general public about living with chronic disease.

Friday, January 29, 2016

Dystonia Revealed

 Of all the diseases that are known to mankind, I think Parkinson’s stands out a mile simply for the bizarre way it lends itself to humour, albeit rather dark humour. Having the ability to laugh at yourself and make light of a serious situation that’s unlikely to improve, is a distinct plus when your world is falling apart and the future looks far from rosy. Many people adopt this very attitude with a fighting spirit as a coping mechanism when living with Parkinson’s.
Although hiding behind a façade and putting on a brave face is a necessary tool enabling you to carry on, absurdly it can eventually be ones downfall. Family, friends and amazingly even some doctors, may not realise the full debilitating nature of Parkinson’s, and the severity of this life changing disease. How can we then blame people for not knowing the true terrifying extent of a disease if we have only ever shown them a false picture? It’s not their fault, but don’t you think it’s about time we educated them? So let’s put down the happy smiling mask for one moment, and reveal what’s really going on.

If you have the stomach to read on I will elaborate, but I would like to reiterate that I am just a patient, sharing personal experiences, so please remember that every individual may have a different combination of symptoms along with side effects from medications. No two patients are the same and what works for one, may not work for another. I would urge any patient to speak with fellow sufferers, whether in person or through the net, to keep abreast of all the latest news and articles available and consult with their medical team, and glean from these various sources the information that is applicable for their particular situation in order to find what works best for them.

As the disease progresses I have been introduced to more exhausting additional symptoms that bring with them a whole new meaning to the word “suffering”. Dystonia, a highly painful aspect where the muscles are contorted to such a degree that one’s body is pulled this way and that, stretching and pulling the skin taut. When this happens to my left leg and foot,  I find myself walking on the inner arch only, instead of walking on the whole foot. When my neck muscles contract the dystonia throws my neck to the right jarring the vertebrae. But dystonia doesn’t stop there, for it frequently grabs hold of my entire torso, preventing me from breathing normally. This causes me to breath in a shallow manner and results in me becoming breathless to such a degree that I can barely string a sentence together. As a result of the constrictive band of muscle around my chest, the heart palpitations and sensations simulate signs of a heart attack. These signs should not be made light of or ignored for obvious reasons and must be checked out immediately by a doctor to clarify that it is dystonia and not a heart attack.

1 comment:

  1. Elaine people need to hear what you are going through. You are amazing for continuing to write at such challenging times. Sending you many good vibes to keep sharing.