Imagine being told you have a terminal illness with a life expectancy of two to five years. A disease where you will eventually lose your ability to walk, talk or even swallow. That diagnosis is given to roughly 56-hundred Americans every year. It's a rare disease called Amyotrophic Lateral Schlerosis, better known as A-L-S or Lou Gehrig's disease.
May is ALS awareness month, and you may be surprised at the number of locals who've been affected by this devastating disease.
You may remember the ice bucket challenge last year. The effort raised 115 million dollars for ALS research.
Even though we knew it was for a serious cause, most of us, including my family, weren't fully aware of what ALS was. And we certainly weren't prepared for it to rock our world.
April 29, we got the devastating news my older brother Marcus had been diagnosed with ALS.
What we learned about the neuro-degenerative disease left us reeling in disbelief.
ALS attacks motor neurons or nerve cells of the brain and spinal cord. Motor neurons are cells that tell your brain to move muscles.
Local Neurologist Mutaz Tabbaa explains that ALS kills these neurons and as you lose more neurons you lose more strength and more muscles.
Tough news to digest for a father of three who is also very active in the lives of his four young granddaughters.
While desperately searching for information, I was surprised to discover how many other locals have been touched by ALS.
It's a tough subject for Bay County Sheriff's Major Tommy Ford whose father passed away three years ago from ALS.
"I really began to research and the investigator in me wanted to find that magic cure on the internet," said Major Ford.
Unfortunately that magic cure is nowhere to be found.
"As I began to learn more about it, I realized there is no current known cure for ALS," added Major Ford.
Dr. Tabbaa says, "Unfortunately when the diagnosis is confirmed there is very little you can do."
The progression of the disease is the toughest, not just for the person with ALS but also for those who love them.
"It requires that support network of family and friends you know.. church family to get through," said Major Ford.
The Chester family couldn't agree more.
Phil Chester's mom was diagnosed with ALS in 2011. He says it's a very hard disease to comprehend. His son Colby Chester says at times it was overwhelming.
"We look at my grandmother and the sweetest woman you would ever meet, and why was this happening to her. Our faith was tested heavily but what kept it strong was that we knew that through this whole horrible process, God still had a plan.. God loved us, he loved her," said Colby.
At the time of her diagnosis, Brannon Chester was studying to become a doctor. He understood what was happening better than the rest of the family and helped his grandmother with exercises and rehab.
"You're just delaying the progress and delaying the affects of the disease, you're not going to cure anything," said Brannon.
"The most important thing as caretakers is that we understand what they're going through," said daughter-in-law Andrea Chester.
For those who've finally come to terms with the disease and those of us who are still struggling to understand, there is one thing we all can agree on.
Major Ford said it best.
"Life is precious and we're never guaranteed another day. Take time to spend with your loved ones. It may be difficult to say the things you want to say but don't wait another day to do that. Because none of us are guaranteed tomorrow. And ALS it is a poignant reminder of how precious life is and how precious the people that are in our lives are."
Dr. Tabbaa did give us a glimmer of hope. There is a new study taking place at Mayo Clinic in Jacksonville involving stem cell research. They take stem cells from the fatty tissue in the patients abdomen. The stem cells are modified and multiplied and injected into the patients spinal cord. Much like and epidural.
It prevents the neurons from dying and regenerates what's already lost. They're in the third phase of the trial for ALS, but have had a lot of success when regenerating the heart muscles after a heart attack.