Lou Gehrig’s Disease, known medically as Amyotrophic Lateral Sclerosis (ALS), is a disease that typically starts out on one of two paths: limb onset or bulbar (affecting the respiratory system and a patient’s speech). It is still a rare disease according to Lori Dobbs, ALS St. Louis Regional Care Services Coordinator, who provides services at the ALS Clinic at Saint Francis Medical Center, Cape Girardeau.
She and a team of ALS St. Louis Regional Care members were present at an open house reception Thursday, March 7, at the Cape Girardeau Public Library.
The reception included a talk followed by a question and answer session by Dr. Andrew Godbey, medical director of the ALS clinic at Saint Francis Medical Center.
On display is “A Day in the Life of Larry,” a photo exhibition of the late Larry Tyler and family, shared by Sarah Howell, photographer. The exhibit will be displayed until Friday, March 22.
The sharp black and white images — complete with many gray areas — portray an ordinary family coping with fatal disease and how it challenges relationships and daily tasks while embracing every precious moment left with a loved one.
Howell’s opportunity to spend two days interacting with the Larry Tyler family before his death in February, 2016, seemed to capture contrasting emotions of comfort and happiness, isolation, desperation, laughter, determination and frustration.
Tyler, a husband, father, grandparent, devoted friend and coach was diagnosed with ALS in 2014. He passed away from the disease 18 months later.
“Larry is very special to us,” said Maureen Barber Hill, ALS St. Louis Regional Chapter President and CEO. “Sarah Howell, photographer, captured the good, the bad and the ugly.”
This was Larry Tyler’s third road trip. His debut exhibit, at Chase Park Plaza, St. Louis, in February 2017, was named “Warm Your Heart with Art.”
The exhibit traveled to St. Louis Public Library next.“A Day in the life of Larry” was brought to Cape Library because of the large footprint held by ALS St. Louis Chapter. “It’s important to get to other parts of the region,” said Barber Hill.
ALS patients can experience difficulty with speech and movement. In every photograph Tyler is wearing his breathing mask. It is no wonder that alternate means of communicating besides talking, are essential for patients to communicate with care-givers, family members and individuals they encounter over the last chapter of their lives.
Tyler’s supportive network—his caring family—is pictured actively helping to bridge the gap of communication with technology. Face to face visits with family members and friends, captured through Howell’s lens, document Tyler’s journey and how isolation was probably not an issue for him.
“There’s not one simple blood test for this disease,” said Dobbs. Symptoms that patients exhibit could be the same as those that stroke patients have. In some ways, diagnosis of ALS is a process of elimination, said Dobbs, who is just one of the many who proudly serve to help provide a better quality of life to those with ALS.
ALS patients are seen at the Saint Francis clinic for evaluation and guidance for their ALS. “We provide care service on all ends to get a patient good nutrition, access to an equipment loan closet and help for caregivers through respite grants,” said Dobbs.
At the clinic, patients are seen by a team of healthcare professionals including a physical therapist, speech therapist, respiratory therapist, nurse, doctor, dietician and care services coordinator.
“Each discipline makes an assessment; then they get together at a round table to implement a plan for a patient’s specific needs,” said Dobbs.
“We try and stay ahead of the disease,” she said.
For people facing enough challenges with daily living, the St. Francis Clinic also enables them to get help without having to travel as far.
Dr. Godbey, neurologist, told the audience there is no cure for ALS and that making patients’ lives better is the goal strived for. “We are getting closer to what causes it. There is a lot of research on genetics in this area,” he said.
“Honestly, the ALS Clinic is an ideal situation. It would be ideal for all disorders. About 15 people have visited between 2018 and 2019 and if they have a lot of concerns, they come back more frequently than every three months,” said Godbey.
Godbey believes his work with ALS patients makes an impact on people’s lives. “In treating people, you look into yourself as well and ask, what if?”
Besides the asset of multiple eyes and different points of view on the patient at the ALS St. Francis Clinic, “Lori will call you on the phone or visit you at home,” said Godbey. “When you’re in the hospital, there’s a lot of stress. Seeing people in their homes is really beneficial. And we also look at the caregiver who is under a lot of stress and determine what are the issues? This makes patients’ lives better. It is really about the quality of life,” said Godbey.
Questions from the audience included concerns from a paramedic who wanted to know the most common issues with ALS. “Respiratory bulbar weakness,” said Godbey. “It is anxiety provoking. The patient can’t breathe. We also focus on being able to swallow.”
Another question from the audience came from the child of a dad with ALS. “Do you see a lot of Parkinson’s Disease followed by ALS in the next generation?” Godbey’s answer: “The biggest risk for all is age. There’s definitely a genetic predisposition but that doesn’t mean you’re going to get it.”