The below story was written before Jeff's passing on July 18th. We are all grief stricken by his loss but it just makes our desire to help others who are suffering through this horrible disease even stronger. Please join us in our battle against ALS!
Our family’s life was forever changed on February 8, 2017- the day that Jeff was diagnosed with ALS. He had been a slightly slurring his words in the evening and After visiting with his family over the Christmas holiday, we decided to get him checked out. The doctors were able to rule out a stroke but advised that we see a neurologist. With the help of a friend who had connections at Emory, he were able to be seen quickly. What we did not know, at the time, is that he had set us up with a neurologist to rule out the most severe possibilities- knowing he could always get referred to someone else once the ‘really bad stuff’ was ruled out. He went to the appointment and went through a battery of tests and we assumed from there we would be having more follow ups before any sort of diagnosis was determined. The doctor, who was one of the 2 ALS specialists in Atlanta, instead gave him the devistating news- that he had the Bulbar form of ALS- which means it affects his swallowing and speech first. It was a complete shock, but was confirmed by a second opinion with the Specialist in Augusta. Our lives have not been the same since that day- as we continue to try to come to terms with the disease, it’s prognosis, and it’s debilitating symptoms.
Jeff continued to work as long as he could, and his work (both of our work, actually) was very supportive and flexible in trying to help maintain a normal life for as long as possible. He was approved to take the only new drug on the market, Radicava, and Jeff happily receives his infusions 10 days a month with the hope of slowing down the progression of the disease.
Luckily, Jeff legs have remained strong and he is able to get around well. He does rely on a feeding tube for nutrition and devices and gestures for communication. His arms have gotten very weak, but he does what he can. His family is always there to keep his spirits lifted with daily FaceTime calls and Jeff continues to go visit them as often as possible.
Our friends, family and Co-workers have been a tremendous support for us! It is truly amazing to see the village we have around us! We hope that we are able to get that village to walk with us, or donate to our team, in the hopes that someday no other families will have to go through this struggle. We hope that this is one way that we can give back and pay it forward
Thank you for helping us reach our fund raising goal! Together we can make a difference in the lives of those affected by ALS. Our team is committed to raising money to support people in our community with ALS and spread awareness of the urgency to find treatment and a cure. Please consider joining our team in the Walk to Defeat ALS® or choose a team member from the list and donate to our cause.
Why We Need Your Help
Amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of a person with ALS averages 2 to 5 years from the time of diagnosis.
Every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries.
ALS can strike anyone. Presently there is no known cause of the disease, yet it still costs loved ones an average of $250,000 a year to provide the care people living with ALS and their families need. Join the movement to provide help and hope today!