Beginning in January of 2006, I noticed a persistent cough. My primary care doctor dismissed this as unremarkable.
My fasciculations (muscle twitching) began in the spring of 2006 starting in my left shoulder. Again my primary care doctor found this unremarkable.
In early October of 2006, my speech suddenly became slurred and I experienced shortness of breath when speaking. I also noticed increased fatigue. When I went to my primary care doctor, he consulted with colleagues, and suspected it could be ALS.
In November of 2006, I traveled to Beth Israel Deaconess Hospital in Boston to consult with Neurologist, Elizabeth Raynor. I had a battery of tests preformed on me over the next couple of days: ,Electromyography (EMG),Pulmonary Function, Arterial Blood Gas, Neurological, etc. They concluded that I probably had ALS.
When I came back to Maine I consulted with Neurologist, Sina Khasani of Neurology Associates of Eastern Maine in late November of 2006. Upon further examination MRI, X-rays, blood work, etc. he confirmed the diagnosis of ALS.
From November until April of 2007, my symptoms continued to become more pronounced with increased fasciculations spreading to other areas of my body , further deterioration of speech, weakness in my legs, increased fatigue and loss of energy.
All of the doctors I consulted explained that there was no treatment for ALS. The average life expectancy is one to five years from onset of symptoms. The only FDA approved drug is Rilutek (generic Rilozole), which can add four months to the end of your life.
I have always been proactive and a fierce fighter against what I viewed as injustices in society. I view ALS as an injustice. When I was told that I had to accept the outcome, since there was no treatment available in the U.S., I explored alternatives in order to fight this evil.
In my pursuit for alternative treatment, I could find no viable, authenticated treatment. My son, John, through his contacts and networking discovered Eden Laboratory in Belize, Central America. This was what my family and I were looking for. A treatment center focusing on stem cell research, a method which seemed to provide the greatest future hope for the treatment of neurological diseases. In speaking with the doctors in charge of Eden, they provided us with the information we required to make an informed choice.
We realized the pioneering aspect of this treatment.
When we factored in the pros and cons of moving forward with this alternative, it became apparent that it was the correct choice for us. I was there from April 13 - 26. So far I have had positive results and we are pleased with the decision we made.