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, June 29, 2018

Parkinson’s Waits for nightfall.

Most are fortunate to go to bed at night, snuggle under the covers and gently drift off to sleep. I used to take a good night’s sleep for granted, but not anymore! We’re lucky if we get 2 or 3 consecutive hours of sleep. You wouldn’t believe what goes on in our bedroom at night! No, I’m not talking about that. I’m talking about the painful dystonia which haunts my nights. Through trial and error, I’ve found the best position for me, is to be flat on my back with my arms straight down by my sides, or laid across my chest, resembling an Egyptian mummy. I don’t have many options since I can’t lay on my stomach due to the PEG tube that connects me to the Duodopa pump. This tube disturbingly dangles freely out of a small hole approximately 8cm above my navel. For some reason I can’t breathe if sleeping on my right side, nor can I sleep on my left side as this puts painful pressure on the long piece of tube in my small intestines. Are you getting the picture? I dread getting into bed at night for it’s not comfortable and certainly not restful.

I am detached from the pump at 10pm, so this is when the fun often starts. I say “fun”, but be rest assured, Parkinson night time antics are far from fun. My poor sleep deprived husband often ends up massaging the cramped muscles, which can be anywhere from curling toes, thighs, calves, to shoulders and neck, or if I’m really lucky, they can all cramp up at the same time!

My right arm often shoots up into the air for no apparent reason, as if possessed or got a mind of its own. It’s incredibly painful as my arm violently pulls my whole body and sometimes my shoulder is black and blue from the amount of deep muscle massage needed to get my arm down.

My breathing becomes labored and I can’t swallow, which is very unpleasant not to mention, a little scary. If my torso goes into spasm, it feels like a Boa Constrictor has wrapped its body around my chest and unable to massage the muscles surrounding the heart and lungs, the only thing I can do is to get out of bed, stand up and do some of my exercises. I go up on my toes, walking on the spot, stretching and moving my body, generally trying to distract and confuse the hell out of Parkinson’s. This agony can go on for half an hour, two hours or more.

When the muscles finally calm down and Parkinson’s has had its fill of torturing me for the night, I slump back into bed exhausted. Dawn is approaching and a new day is here, and so i get to battle Parkinson's again with all its unpredictable tricks.

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