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.

Tuesday, September 24, 2013

The Sound of Music

If Parkinson's were a child, I would tell it off sternly and make it go and sit in the corner whilst thinking about what it's done. It won't let me rest, nor sleep, is under my feet the entire time, and like a continuing nagging spoilt brat, demands constant attention. Some days are better than others, and generally my mood is upbeat, positive and I remain cheerful. Other days are not quite so good, and like a Duracell bunny without its batteries, I barely function, stiff and rigid, fatigue takes over. On these occasions, frustration sets in as I am unable to achieve anything constructive and it feels like a waste of a day.

I have an alarm set on my mobile phone that repeatedly goes off when it's time for me to take my pills. I stick rigidly to my medication regime, and try to not over do things, but despite doing my best, now and then Parkinson's simply takes over for no rhyme or reason and if I'm really unlucky, Gaucher disease will decide to join in the party and add to my misery. When both diseases are playing up, there is little I can do except tersely succumb to their debilitating symptoms.

A fellow Parkinson's sufferer who has become a dear friend said something that struck a note as only someone with Parkinson's could truly understand and appreciate. She said: "I even have to work hard at having a good time, it doesn't come easy." This sentence really caught my attention, for no one would imagine how much effort is involved in simply enjoying an evening in company unless you are suffering Parkinson's. My husband and I were invited last night to friends who we are very fond of, are so hospitable, we always enjoy their lively company, and wonderful spread they must spend hours preparing. However with so many different conversations going on at once around the table it was extremely difficult for me to follow, and the late hour as anyone with Parkinson's will attest, one is not at one's best shall we say. Mornings or lunch time are best, for as the day wears on, it's as if my batteries are running out. So sadly last night we had to break up the party and be the first to leave. 

Most days I fight tooth and nail to keep this Parkinson prankster in its place, for I am stubborn and wont give in. I'm not about to let it ruin my life and that of my family. I'll continue to stay hopeful, and count my blessings. It is doubtful that I will see a cure for Gaucher disease in my lifetime, but I hope and pray that a cure be found for Parkinson's very soon. It would be a dream come true, to bid Parkinson's so long, farewell, auf wiedersehen, goodnight. That would be the ultimate sound of music to all our ears!

No comments:

Post a Comment