ALS Clinic team provides care, support for former UK Wildcat

Talbott Todd had a memorable football career as a UK Wildcat in the mid-1960’s, playing multiple positions for Coach Charlie Bradshaw.

Todd is perhaps most famous for his 1964 game-clinching fumble recovery that ended top-ranked Ole Miss’s 22-game regular-season road game winning streak. His tenacity on the field was acknowledged last year when UK named the alley between the football field and Nutter Field House “Talbott Todd Way.”

That same tenacity continues to serve him well today as he and his family deal with his 2015 amyotrophic lateral sclerosis, or ALS, diagnosis. ALS is a progressive neurological disease that affects the nerve cells in the brain and the spinal cord, eventually stealing from its victims the ability to walk, dress, write, speak, swallow and breathe. Most ALS patients die within five years of diagnosis, and currently, there is no cure.

“Everything about Talbott was happy, healthy and normal, but I noticed that every once in a while, his speech was slurred,” said Marilyn, Todd’s wife of 52 years. “The first doctor thought it was medicine side effects. A second doctor conducted every kind of test, but ALS was not in our thoughts at all.”

After he was diagnosed with ALS, Talbott and Marilyn made an appointment with Dr. Ed Kasarskis, director of UK ALS Clinic at the Kentucky Neuroscience Institute. The couple felt a connection the moment Kasarskis walked through the door – the result, Marilyn says, of his easy personality, patient listening and clear explanations.

“He acknowledged right away that this diagnosis was something no one wants to hear, but we weren’t entirely powerless in the situation,” Marilyn said. “Everything about him said, ‘This is not just about being sick.'”

A team approach to ALS care

Every day about 15 people learn they have ALS, while tens of thousands more are living with the disease, which requires a dizzying array of treatments and services to help them stay mobile and independent. The ALS Association, headquartered in Washington D.C., was formed in part to provide people with ALS and their families the resources to live fuller lives.

Research has shown that multidisciplinary care, or the practice of having physicians and other healthcare professionals collaborate to provide the most comprehensive treatment plan for patients, helps people with ALS have a better quality of life and actually prolongs life in most cases.

Kasarskis (fondly called “Dr. K” by patients and staff) is committed to multidisciplinary care, and his ALS Clinic at UK is set up so that patients can typically see every member of the care team – neurologist, physical therapist, occupational therapist, respiratory therapist, nurse, dietitian, speech language pathologist, social worker, mental health professional and an ALS Association (ALSA) Chapter Liaison – in a single visit.

That, plus UK’s significant involvement in ALS research, has earned the ALS Clinic a coveted title from the ALS Association: ALS Association Certified Treatment Center of Excellence.There are fewer than 50 such centers in the U.S., and UK is the only one in Kentucky.

“The University of Kentucky continues to exhibit the highest levels of established national standards of care in the management of ALS, providing patients with high-quality compassionate care and support,” said Mari Bacon, executive director for the Kentucky Chapter of the ALS Association. “The care that people receive here is a model for other parts of the country, and I’m proud that we are able to recognize UK for its outstanding multidisciplinary approach to treating people with this devastating disease.”

Finding strength in the ALS community

Marilyn points out that an ALS diagnosis requires the entire family’s hands-on assistance.

“God blessed us with two sons,” she said. “Their love and support cannot be measured in time or money, and we could not do it without them.”

Marilyn also treasures the friendships she’s made through the ALS Association Kentucky Chapter support group meetings.

“We ask questions of one another and share ideas,” she said. “We support family members in their grief and keep up with each other long after the battle is over.”

ALS exacts a significant financial toll as patients tend to require expensive equipment to help prolong their sense of independence at home. A customized wheelchair, for example, can cost $25,000 to $30,000 and take several weeks to manufacture. The ALS Clinic at UK, in partnership with ALS Association Kentucky Chapter and volunteer Roddy Williams, helps manage the Loan Closet, which functions as a public library of sorts that supports patients until their own equipment arrives.

“ALS is often not diagnosed until the patient has significant symptoms, and you can’t just get equipment off the shelf,” said Kim Williams, Roddy’s wife and a partner in their business, APEX Mobility. “The Loan Closet helps bridge the gap while the patient waits for their new equipment to arrive.”

The Todds used the Loan Closet after Talbott was first diagnosed and are currently awaiting the arrival of his new customized wheelchair.

The ALS Clinic was recognized for its ALS Association certification during a reception and plaque presentation last week, and the Todd family was present to help commemorate the honor.

“What this clinic has done for us is immeasurable,” Marilyn said. “On a scale of one to 10, I’d give Dr. K a 20.”

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