Mayo Magazine

Building Bridges — ALS Clinic Offers Sense of Hope, Inspiration for a Better Tomorrow

Kevin Boylan, M.D., director of the ALS Clinic at Mayo Clinic Jacksonville, and Valerie Armstrong, nurse practitioner and clinic coordinator.

Few diagnoses are more dreaded than amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. The prospect of a progressive, paralyzing illness has a tremendous physical and emotional impact on both patients and their families.

The challenges facing people with ALS are greater still if their medical care reflects the outdated, but still prevalent, opinion that "nothing can be done," says Kevin Boylan, M.D., director of the ALS Clinic at Mayo Clinic Jacksonville. While there is no cure for the disease — a neurological condition that damages voluntary muscles — recent advances in providing comprehensive, multidisciplinary care allow people with ALS to function longer and with greater independence.

"One of the most important things that physicians can convey to people with ALS is a sense of hope, with an understanding that there is something to offer in the treatment of ALS," says Dr. Boylan. "This begins at diagnosis. If done well, the delivery of the diagnosis can be one of the most important therapeutic interventions a caregiver can provide."

It also creates an effect that is quite visible — if not inspiring — says Valerie Armstrong, a nurse practitioner who serves as the ALS Clinic coordinator.

"Dr. Boylan takes a negative and is able to add a positive," says Ms. Armstrong. "He says, 'I'm sorry to give you this news, but we have so much to offer you here.' You can see patients respond, like an enormous burden is being lifted."

Joining Forces

Wrapped within this compelling example of good bedside manner is a powerful story about philanthropy's significance for patient care at the ALS Clinic — care that centers around the services Dr. Boylan mentions during diagnosis.

Driven by the desire to provide the type of multidisciplinary care Dr. Boylan described earlier, he and Ms. Armstrong launched the ALS Clinic four years ago. With the philanthropic support of Thomas Becker, an ALS patient from Jacksonville, and Mr. Becker's wife, Mary Beth, they recently achieved a milestone in their mission. Earlier this year, the clinic received certification from the ALS Association (ALSA), a national organization that has developed standards for state-of-the-art care for ALS patients.

In receiving this designation, the Jacksonville ALS Clinic joins its counterparts at the Rochester and Arizona campuses, which have previously received ALSA certification. It also is the first in Florida and the second in the Southeast to receive this recognition, which is more than a stamp of approval. The certification directly benefits ALS patients at the Jacksonville campus by providing them with a coordinator who ensures that patients receive follow-up care after leaving the clinic.

"The coordinator is a bridge between the clinic and our patients," says Ms. Armstrong, who also is responsible for follow-up care. "It helps us maximize quality of life by delivering treatments in a timely fashion. This is especially important for ALS patients because declines in one area can aggravate problems in other areas."

The ALSA coordinator joins a team of about 20 health care professionals who are part of the ALS Clinic's staff. Because of the range of problems ALS creates, adequate care requires a broad team of specialists, not just physicians from many disciplines but also respiratory therapists, occupational therapists, physical therapists, social workers and others.

One-stop Care

This diverse team meets once a month to assess patients who are recently diagnosed with ALS and to develop comprehensive care plans. Offering all of these services in one location allows the team to better accommodate the limited mobility of many ALS patients. This one-stop environment reflects current thinking on providing the best care for ALS patients, says Dr. Boylan, who was drawn to this area of neurology because of the challenges ALS presents to patients.

"The disease creates total paralysis without substantially affecting mental function," he says. "It's frightening to patients, and that makes me want to understand what causes the disease and find better ways to treat it. A lot of smart people have been working on this for a long time, and the progress has been slower than all of us would like. But that just increases my motivation to find more effective treatments."

It's a motivation shared by Mr. and Mrs. Becker, whose philanthropic support during the past three years has helped bring the clinic's parts together and has helped fund clinical studies of experimental therapies.

A retired banker who now splits his time between Florida and North Carolina, Mr. Becker was diagnosed with a less-aggressive form of ALS more than five years ago. The average life span of people with ALS is three years after diagnosis. Although his form of ALS has allowed him to live much longer, it has a drawback: It makes him unable to participate in studies of new therapies, most of which are reserved for more seriously ill patients.

But no frustration comes across when Mr. Becker discusses his condition.

"For me, every day is a dividend from God, and I try to spend it wisely," he says. "That's what I try to remind people: Spend your time wisely. People are dying every day from myriad diseases. It just so happens I have ALS. Do I expect a cure for me? No. But I definitely anticipate there will be one in the near future, and that's what we're all working toward. We are all trying to build bridges for those who follow us."

The "we" Mr. Becker refers to is a large group. Not only his wife and fellow "PALS" — people with ALS — but a collection of former employees and co-workers who have come together to help him raise money for ALS programs and research. Each year, they organize and run a golf tournament fundraiser in Jacksonville. The proceeds are split between Mayo Clinic and an ALS Research Institute in Massachusetts.

The news of Mayo's ALS Clinic certification is one of many highlights that Dr. Boylan has enjoyed sharing with the Beckers. Each year, he writes an update explaining how their money has been used, and he reports on the progress their funding has supported.

Mr. Becker says he and his sponsors eagerly look forward to Dr. Boylan's updates. The news shows them they've made a good investment. But he adds that it's easy to take a chance on people like Dr. Boylan.

In the years ahead, the Beckers, Dr. Boylan and Ms. Armstrong want to see the ALS Clinic grow so that the ALS care team meets weekly. They say the need is there, particularly as people become more aware of the clinic's services and its studies of new therapies. The clinic's growth will hopefully be part of an exciting future for ALS care, says Ms. Armstrong.

"I do look forward to seeing an effective therapy for ALS during my lifetime," she says. "We're hopeful that research will tell us more about the disease and produce drugs that are more specific to its cause. I am an optimist; so, yes, I believe we will see that."