About The House of Thoth, Photography, Progressive Bulbar Palsy, and My Cause
For those of you who follow L&L Photography Blog, I have a special message that I wish to share with you that really doesn’t pertain per se with photography, but it does pertain to sales, I want to tell you in case you haven’t figure found my link to the book I have written a novel titled, the “House of Thoth.”
For you who have not yet begun to read the book and are merely surfing or our readers of this blog, I wanted to post a very brief summary for you below.
“So if you thought you knew everything about the supernatural – guess again. In this haunting and suspenseful science fiction fantasy epic, (You) the reader will be guided on a historical quest through time: from the twenty-first Century America back to a time before the great flood of Noah, to ancient Egypt where the gods and goddesses of mythology rule along side mankind, and where the dark and mysterious Underworld exists unbeknownst to those surrounding it. From the first pages the reader is enveloped in a curious world of esoteric societies, infamous lineages, and an ancient bloodline.”
So, if you want more….please read my posts which can be reached by clicking on the links I have provided in this article and on the homepage of this blog, “House of Thoth”. If you are intrigued, which I hope you are, please continue by reading the novel. I hope you will have as much fun reading it as I did writing it. And fun comes with different meanings for which you will understand the more you read on. And it is not for young adults, but I will leave that to the parents to decide.
I would like to thank the many faithful readers who have already discovered the novel and have taken the time out of their busy lives to read ‘The House of Thoth”. Readership has increased each day since first posting on October 13, 2011, and has made its way around the world with readership in Europe, Asia, Australia, South Pacific, Guam, Africa, Egypt, and across the US. I am both humbled and gratuitous so many people have begun to read. I am searching for an Agent/publicist to get the book to print. And with so many of the positive comments, I hope this will soon be a reality for many reasons.
My original goal for this book, like all authors is to get their work published. Well, this of course is still my first intent, my inspiration and focus for the novel changed course dramatically August 5, 2010. Now my goal has shifted from merely getting the book to print but to also bring awareness and hopefully gaining funding for rare Motor Neuron Diseases – Specifically, Progressive Bulbar Palsy. Why PBP?
On August 5, 2010, at the age of 46 our world crashed, when I was diagnosed with PBP, a rare motor neuron disease (MND), very similar, yet very different to Amyotrophic Lateral Sclerosis (ALS), Lou Gehrig’s disease. MNDs are a group of progressive neurological disorders that destroy motor neurons, the cells that control essential voluntary muscle activity such as speaking, walking, breathing, and swallowing.
Progressive bulbar palsy– specifically involves the bulb-shaped brain stem —the region that controls lower motor neurons needed for swallowing, speaking, chewing, and other functions. Symptoms include pharyngeal muscle weakness involved with swallowing, weak jaw and facial muscles, progressive loss of speech, and tongue muscle atrophy. Limb weakness with both lower and upper motor neuron signs is almost always evident but less prominent. Individuals eventually become unable to eat or speak and are at increased risk of choking and aspiration pneumonia, which can be caused by the passage of liquids and food through the vocal folds and into the lower airways and lungs.
The bottom-line is there is not a cure, there are no drugs to slow the progress, and no one doctor can agree with anything about the disease – it is very hard to diagnose. Furthermore, the doctors have no answers about life expectancy. The average survival rate for PBP is 1 to 3 years upon onset. While those with ALS, the survival rate is 3 to 5 years and in rare cases 10 years.
We want our proceeds to go specifically to PBP research and not ALS, because there is little to no specific research being performed. If more money and more people become aware of the disease, the sooner a cure might be discovered; or at the very least a drug developed to help prolong life and help with the symptoms. Take it from someone who has the disease, it is a horrifically painful, debilitating, and sometimes embarrassing illness. One for which I wouldn’t wish on anyone.
Imagine searching Internet and not finding anything about the disease you’ve been diagnosed. That was us, as my husband and I looked blank faced at our doctor when she gave us the unfortunate news together. To this day, there is very little new information posted on the disease. PBP is so rare, which in part is why no one will fund the research. There is simply not enough funding available and frankly would not represent a good investment for pharmaceutical companies. Therefore, it is up to me, my husband, our company L&L Photography, our friends, family, supporters and other like-minded people to chip away at the monster, all with the hope that one-day a cure will be found for this horrific and painful disease.
You can find out more information about the disease on other blogs I have posted on this blog, or by clicking here or The House of Thoth. So, please pass the word around about the novel and cross your fingers, it is our goal to find an agent and publisher soon, to pick up this book. It is also our wish to give a percentage of the book sales toward our cause along with sales from our photography, unfortunately, we can do this by ourselves.
While, it is highly likely I will never benefit from my cause, it is my wish that the funding to continue in perpetuity, until a cure is found. While the “House of Thoth” as written, can stand alone, it was written with a sequel in mind. I had begun writing the second book when I found out I was ill; I am now working diligently to get the second book finished before I am no longer able to do so, and if possible a third as I have the books in my head it is merely a matter of getting my ideas to paper and thus to an agent. I hope to begin posting chapters to the sequel to the The House of Thoth very soon, and will place on this blog, our website, and other blog a link to the new book titled ‘Benandanti – Rise to Power’.
Thank you again for your support and readership. I am extremely grateful and humbled. If you would like to contact me, I can be reached by email at LAEdwards@landlimages.com.