THE BLOG

Educating Rita

14/11/2013 13:04 | Updated 23 January 2014

Those of you following my personal blog or reading articles I've written for The Huffington Post are presumably either fellow sufferers, have similar chronic diseases, caregivers, doctors interested in hearing a patient's perspective, or maybe you know someone who has Parkinson's. However, reaching and educating people who have no connection to anyone with Parkinson's is extremely difficult. I have been to several events recently where I was shocked to learn just how little the general public know about Parkinson's. I overheard a lady (we'll call her Rita) say in a hushed voice to her husband, as she looked my way: "She looks too young to have Parkinson's and I can't see her shaking." Can you visualise how I felt hearing this all too familiar irritating comment, that comes basically from a lack of knowledge. I battle through each day and experience a myriad of debilitating symptoms. You can't imagine how badly I wanted to stand up right then and there to give a talk, explaining what Parkinson's is; how young some people are when diagnosed, that shaking is not the begin and end all of Parkinson's, and through trial and error the right medications can to a degree, stop some of the shaking. Many of the unpleasant symptoms I suffer 24/7 are not visible, yet Parkinson's is a serious and degenerative disease. Thankfully my British sense of decorum kept me in my seat and tactfully my mouth shut, for I was in someone else's home and had not been invited there to disrupt a party by giving a talk about Parkinson's. It wasn't the time or place, but it did get me to thinking.

How do I reach those who need to be educated? I suddenly had a brainwave and it occurred to me that people sitting in a dentist's waiting room, at the hairdressers, local libraries or public areas, would be places that a person unwittingly might pick up a book for lack of something better to do. If my book was distributed to such places, it may reach my targeted uninformed audience. My book of poems is written with humour, and explains succinctly in simple language what is Parkinson's disease. The whole idea of me writing a short book of rhyming poems was to catch people's attention. It's brief enough for someone to read in a short space of time, without complicated medical terminology, yet gives a clear and concise picture of what it's like to live with Parkinson's.

Although my book is available through Amazon and Smashwords, this is for e-book readers and with a special application it can be downloaded and read on a regular computer. However I had hard copies printed which can be purchased through my website using Pay-pal. As I have mentioned before, I do not get paid for any articles I write, nor public speaking engagements (apart from travel expenses).With limited funds I paid for printing so a hard copy of my book would be available. Now this is where I need your help, so please indulge me and read on. If you would be kind enough to purchase a hard copy of "Parkinson's, shaken, not stirred" through my website, the book will be mailed to you immediately, which you can then take to your hairdresser or dentist next time you go, leaving it there for people to read. If you would like to donate the book to your local library, I'm sure they would willingly accept it, once you explain the purpose of this project.

Getting my message out to the general public is not easy. I cannot do this without your help, so ask you to join my campaign in educating those like Rita who do not know, and help spread further awareness. Up to this point, I have been an advocate for Gaucher and Parkinson's disease, doing everything myself, but I am just one person, in poor health and unable to fund distributing my book around the world. I am appealing to you to spend a moment of your time and a small sum, in the hope that maybe through shared efforts we will reach an audience who know nothing about Parkinson's. I'm sure that fellow sufferers, like myself would be grateful not to hear another stranger say; "She looks too young to have Parkinson's and I can't see her shaking!"

http://www.elainebenton.net/

2013-11-13-bookcover.jpg