In Search of Wings to Soar
Facing the trials of an insidious disease, a Louisville woman seeks to help others with a statewide fundraising effort

Cynthia Shaw Crispen is a woman on a mission. That mission is to make a significant change in the University of Kentucky. It is a goal that university officials wholeheartedly embrace. Crispen, of Prospect, is spearheading a statewide fundraising effort to create an endowed chair in Amyotrophic Lateral Sclerosis (ALS) Research in the University of Kentucky’s College of Medicine. It is a lofty goal with a hefty $1 million price tag. But Crispen is confident the goal will be met.

"I just thought, well, let’s go for it!" said Crispen. "I just finally realized that to save my own sanity I had to do something positive."

Crispen’s mission was borne out of her own trials with ALS, also known as Lou Gehrig’s Disease. ALS is a progressive disease that attacks nerve cells in the brain and spinal cord. It steadily robs its victims of the ability to move and to eventually swallow and breathe. Brain function is not affected.

It is commonly called Lou Gehrig’s Disease because the famous New York Yankees baseball player suffered from it. There is no cure and the prognosis for those who have it is nothing short of grim. Doctors do not know what causes the disease.

"I think I have accepted it," Crispen said recently. "I still have anger but it comes and goes."

Before being diagnosed, Crispen was leading what most people would consider a charmed life. A graduate of Eastern Kentucky University, Crispen is a medical technologist by training. She once worked at the University of Kentucky. Her husband, Mel, is a graduate of EKU and the University of Kentucky School of Medicine. He is an anesthesiologist at Baptist Hospital East in Louisville. The couple have two children, Robert, 9, and Claire Marie, 3. They have a beautiful home in a stately development just outside Louisville.

Crispen was elated to learn three years ago that she was pregnant with her second child. She was 40 at the time and had wanted another child for some time. But she didn’t feel well during part of the pregnancy. She attributed it to the season – summertime – and to her age.

Crispen said she felt tired during part of her pregnancy and noticed that her fine motor skills weren’t up to par. She sometimes had trouble turning the key in her car’s ignition. After her daughter was born, she started noticing a weakness in her legs.

"I thought, gosh, I’m so out of shape," said Crispen. "In the springtime, when I started to get out and exercise...I was finding that I was having trouble getting my hips to move. It wasn’t like I was out of breath; my legs were fatigued."

The problems continued and began to worsen. Her husband said they should investigate her symptoms further.
"So we started at the top, which was the diagnosis," Crispen noted. Unfortunately, diagnosing ALS can be difficult. It is a diagnosis of exclusion. "It’s not like cancer," said Crispen. "There’s not a specific test to determine it."
Various tests such as an EMG did indicate a weakness in her hands, spine and legs. That’s when Crispen’s neurologist in Louisville told her he thought she might be suffering from ALS.

"I about fell off the table," said Crispen. "I knew what ALS was but I was under the impression that it was just an old man’s disease. But I was fully aware that it was terminal."

Crispen then made an appointment to meet with Dr. Edward Kasarskis, a professor of neurology at the University of Kentucky. Kasarskis is conducting ALS research and treating patients who suffer from it in Kentucky.
"He pretty much confirmed it for us," Crispen recalls. "We just felt like somebody had punched us hard in the stomach. It was such a shock."

Kasarskis said that Crispen was clearly devastated by the news. "There’s a tremendous depression that ALS patients go through," Kasarskis explained. He describes the disease as insidious. It starts out most often with fairly minor symptoms but progresses to devastating consequences. Kasarskis said that 50 percent of patients with ALS die within three to four years.

Currently, the University of Kentucky Medical School is the only medical facility in Kentucky doing research in ALS, noted Kasarskis. The closest well-known research facility is in Cleveland.

Crispen did go to the Cleveland facility and participated in a drug study there. Unfortunately, she was part of the group that received a placebo. Once she realized that, she withdrew from the study.

In June 1998, Crispen began participating in a study at UK. She started taking Myotrophin, an experimental drug that was thought to stop the progression of the disease. However, the FDA has not approved the drug and, as a result, the drug company has decided to stop making it.

"There are some people who are convinced that this (Myotrophin) has stopped the progression of their disease," said Crispen. "It’s another level of frustration that we’re feeling. Just because it (ALS) is rare, doesn’t mean that we should be denied access to quality care."

Crispen decided to do something constructive. She suggested the idea of establishing an endowment at UK. Earnings from endowment investments fund scholarships, endowed chairs, professorships and research. Crispen wants to see UK become the ALS research center in Kentucky but admits she "has a bigger vision than the $1 million" needed to fully fund an endowed chair.

Clearly, a cure is needed. In the meantime, though, Crispen would like to see work progress on diagnosing the disease and helping those who have it through physical and occupational therapy. Since the disease is terminal, there are also legal and end of life issues to address, not to mention staggering financial costs.

UK is the appropriate spot for a research facility, Crispen notes, because Dr. Kasarskis and his colleagues have been doing work in ALS for nearly 10 years. "It’s not like we’re starting from scratch," she said.

Unless one has a friend or relative who suffers from ALS, it is difficult to imagine how the diagnosis and progression of the disease completely alters lives.

"I require more care than my three-year-old now," said Crispen.

Just three years after her diagnosis, Crispen is confined to a wheelchair and must have assistance in bathing, eating, even going to the bathroom. The disease has robbed her of her desire to be an equal partner with her husband and a mother to her young children. It has touched her entire family, especially her husband.

"This is heartbreaking on many levels for him," said Crispen. "He’s grown so weary. It’s just very, very difficult for him to juggle all his roles. I am amazed at his strength."

Support for Crispen’s dream is not lacking. Already, Crispen and her friends have raised more than $10,000, which is the amount needed to launch an endowed account. A large portion of that initial gift came from Kevin Heidrich, of Edgewood. Heidrich also suffers from ALS. His friends and family had raised $68,000 during a golf outing. The money was to help with medical needs and fund his children’s college tuition.

Crispen told Heidrich of her desire to help establish a research facility in Kentucky. She and her friends had raised $2,000. Heidrich presented her with an $8,000 check late last year.

"I told him, ‘you have just given us the wings to soar to $1 million,’" said Crispen.

They hope to hold a fundraiser next month (February) at The Palace, in Louisville.

Work is also taking place at UK. Trish Sills, development director for the UK College of Medicine, said she is currently "looking for major gifts to reach the $1 million mark." They hope to make that goal by this summer. (summer 2000)

In the meantime, Crispen is continuing to struggle with new challenges that ALS throws at her. "You just kind of have to live for the moment, live for the day," she explained. "Planning for the future is kind of frightening."

Crispen says she feels blessed by a supportive network of family and friends. Her neighbors bring her home-cooked meals, help take care of her children and even write her thank you notes and Christmas cards.

Late last year, one of her neighbors planted hundreds of bulbs in her yard to make springtime more colorful. Other moms and teachers insure that she is kept well informed of her son’s progress in school and in extracurricular activities. Crispen’s mother and sister visit to perform regular household duties that she can no longer accomplish by herself. She also has a supportive caregiver, affectionately called Miss Mary.

"It goes on and on," Crispen said. "In my old life, I was very much the worker bee. I don’t like to be a queen bee. But you just have to be a gracious receiver. It reduces you to that."

If you would like to make a tax-deductible contribution, checks can be made payable to the Cynthia Shaw Crispen Endowed Chair in ALS Research, in care of Trish Sills, Office of Development, University of Kentucky, A301 Kentucky Clinic, Lexington, KY 40536-0284.

Lisa Summers is a staff writer for The Lane Report.

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