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 23, 2015

Travelling is Difficult

Like a good bottle of wine, I don’t travel well, and am taking things easy for the next few days. Where have I been? My husband and I have just returned from speaking at a Gaucher Conference in Poland. This time my husband also gave a talk, from the caregivers perspective. We are very much a team; both have positive attitudes and are proactive.

Now in my 8th year of living with Parkinson’s, fellow sufferers can no doubt relate to how difficult it is travelling abroad. For those who do not suffer this rotten disease, to fully understand how it effects a person, is probably near to impossible. An airport is most definitely a non-friendly environment for someone with Parkinson’s. The chaos, loud noise everywhere, thousands of people milling around, it’s all too much when you suffer from Parkinson’s disease.

We always take my wheelchair with, for just getting from the entrance of the airport to the check in desk is a mammoth walk for anyone in poor condition, and then waiting in line, going through security, all of which involves considerable walking and standing before even getting on the plane. I take my wheelchair right up to the door of the plane, and manage the short walk to our seats. We remove the foot rests and cushion from the wheelchair and take these with us onto the plane. My wheelchair is then taken away and put in the hold.

Once seated on the plane, trying to sit still for an entire flight, with the occasional bathroom visit is far from easy. This is when Gaucher disease decides to join in the party that’s going on inside my body. The barometric cabin pressure always effects my joints and long bones, which become extremely painful during a flight. Not all Gaucher patients are subjected to this symptom, but those who suffer bone involvement, probably experience something similar.

I may not travel well, but I will continue for as long as I’m able. I am grateful for the opportunity to speak at conferences abroad and help spread further awareness about Gaucher disease. Everyone needs purpose in life, a reason to get up each morning, and the ability to contribute to society. No matter where you go, "there’s no place like home”!

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