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.

Sunday, October 13, 2013

Too Heavy

I would like to say how heart-warming it has been receiving e-mails from so many Gaucher and Parkinson's patients around the world. Having contact with someone who intimately understands what life is like living with either of these diseases, sharing one's story, gives support and a feeling of not being alone. Thank you for writing, your messages are much appreciated. I apologise if I have not replied to everyone yet, who took the time to send me e-mails, but I'm rather snowed under, so please be patient, and I will get around to answering you all personally.
I was at a hospital recently and had to visit the ladies room, or as a dear aunt would say "to powder my nose". I never did quite understand what "powdering one's nose" had to do with a normal bodily function. Any way, I digress; I found much to my amazement, the door to the ladies toilet (I presume the men's toilet door was the same, but I confess I did not try it) was so heavy, I could not push it open. I had to stand and wait for someone to come along and open the door for me. Once inside, the doors to each cubicle were light in weight and easy to open with large locks perfect for Parkinson's fingers with little dexterity. However, once I had washed my hands and wanted to exit, I again couldn't open the heavy door and was trapped there till a lady came along and opened it for me. Of all places to find a toilet door that is too heavy for someone disabled, feeling unwell or weak, a hospital is the last place I thought I would discover this problem.
I have been in many restaurants and shopping malls where I have come across doors too heavy for me to open, but to have this difficulty in a hospital is incomprehensible. I'd love to know who was responsible for ordering the doors. Did anyone think or check before ordering such unsuitable doors? Has anyone complained? Maybe its not occurred to any of the staff, but next time I attend this hospital, I shall bring this to their attention, and hope something can be done about it. Maybe it's simply a question of changing hinges that will allow the door to open easily.  
It's small things such as this that can make life difficult for people like myself. Planning any public building, doors that are wide enough to take wheelchairs and don't require Herculean strength to open, should surely be a basic requirement. If the person in charge of designing and ordering items for a public building, such as doors, door handles, and chairs in waiting rooms, to mention just a few items, has no experience with disability, then they should call upon the expertise of someone who knows what is required.

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