Please join us in the Walk to Defeat ALS in honor of Scott Keniston who was diagnosed with amyotrophic lateral sclerosis in May of 2018.
Scott was born an athlete. He grew up playing soccer, baseball and football, golfing and riding dirt bikes. Adulthood didn’t slow him down. He continued to play softball and soccer, ride mountain bikes, golf and race dirt track cars and compete in endurance road racing. And, there is always fishing (ask him about his prized mounted bass).
With all that activity, he wasn’t surprised when a visit to the orthopedic doctor for a “tweaked” knee pain led to the diagnosis of arthritis in both knees just before his 49th birthday.
Over the next several months, the doctors tried different treatments for his left knee pain. It was during the long trek from the 49er parking lot to the new Levi Stadium for home games (a one-mile walk) that he first noticed his left leg “dragging.”
After mentioning this sensation to his doctor, MRIs of his lower back were ordered. Nothing significant was revealed. The doctor continued experimenting with treatments, trying shots to lubricate his knee. It wasn’t helping.
At his last visit with that doctor, Scott mentioned that his flip flop continually fell off. That was the clue the doctor needed. He realized Scott had foot drop in his left foot. He referred him to a spine specialist and recommended an EMG to determine the cause.
The spine specialist conducted his own physical exam and proceeded through his own line of questioning. After discussing his findings with some colleagues, they recommended Scott see a neurologist for an EMG as they are more familiar with the test.
A brain MRI, neck MRI and bloodwork were also ordered.
On May 10, 2018, Scott was admitted to Barrow Neurological Institute for his EMG. All the other tests had come back clear. Those results along with an abnormal EMG result would lead doctors to diagnose Scott with ALS.
Scott and his wife, Patti, listened to the doctors walk them through the next steps. On the eve of their 50th birthdays and their 30th wedding anniversary, this terminal disease was not a part of their plan.
While there is no cure for ALS today, neither Scott nor Patti were ready to give up. That day, they vowed that they would fight this disease and help the doctors and the medical community as they raise awareness and search for a cure.
Three days later, on Mother’s Day, Scott and Patti were involved in a horrible car accident. It was by the grace of God that they both survived. They both believe that God had a reason for sparing them that day. Advocating for this disease and helping the efforts toward a cure is just one reason.
The mission of the ALS Foundation is “to discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.”
Scott, Patti and their family are dedicated to raising funds for the ALS Foundation to help them fulfill their mission.
Despite his diagnosis, Scott feels blessed with many gifts. He is surrounded by family and friends who love and support him. He and his family have witnessed countless kindnesses as strangers have reached out with their support and prayers. God led him to the right doctors at the right time for a quick diagnosis. Many are not as lucky and spend years searching for a diagnosis.
Currently, his only symptom is foot drop. ALS has not yet affected his breathing, speech, arms or hands. The disease seems to be progressing slowly for him. Thank the Lord!
He will continue to fight this disease and raise awareness with the help of his family, his friends and the amazing staff at Barrow.
We all hope that the cure comes soon. But if that is not to be, we fight for the future of other families.