About me

PROFILE:
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.

Tuesday, August 7, 2018

Home safe and sound


My husband has returned safe and sound from his week away. Being my primary caregiver, the last two years have taken their toll. I want to say a huge THANK YOU to all those who took care of me during this long overdue break. Until you step into his shoes and get a clear hellish look at Parkinson’s disease up close, you cannot begin to imagine the raw cruelty, festering like an open wound, gradually that eats away both the sufferer and caregiver. A caregiver must have a break from the tyranny that rules endlessly, to recharge their internal batteries, from the ongoing emotional and physical demands, otherwise they will eventually burn out and not be able to function.

My family and friends rallied around and a rota system put in place ensuring that I wasn’t alone at any given time. The nights were particularly hard as I’m disconnected from the Duodopa pump, and this is when the painful muscle spasms start and can go on for hours. Who needs an expensive membership to a gym when you've got Parkinson's to give you a personal workout at home? If I’m really unlucky – these antics can continue the entire night and only when I’m totally exhausted and its time to reconnect to the pump at 05:00 do I find relief. Every patient is different, and experiences are not the same. It’s a matter of trial and error. Other patients on the Duodopa Pump may not suffer during the night as I do.

I am so grateful to have the caring support around me, and realise it may have been a shock for them to see what my husband and I have to endure, and how very important it was for him to have a break from it all.

No comments:

Post a Comment