A center in Rhode Island to treat what is commonly called Lou Gehrig’s disease has eased some of the trauma for patients and families who must deal with the devastating condition. Instead of traveling to Boston or one of a number of out of state clinics, patients and families can now be treated and counseled at the Louise Wilcox ALS (Amyotrophic Lateral Sclerosis) Center in the Medical Office Building across from Rhode Island Hospital.
Opened 18 months ago, it is one of a dozen similar clinics in New England and follows a national trend toward team treatment, according to its medical director, Dr. George Sachs.
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The center is open only on the last Friday of each month, when a neurology office is transformed into the ALS center. While there ALS patients and their families can meet with several different specialists – a neurologist, pulmunologist, occupational therapist, physical therapist, nutritionist, speech therapist and social worker – in one location.
“Together, the team decides what the best plan is for each patient,” Sachs said.
This convenience has already been a help to area ALS patients, including the center’s namesake, Louise Wilcox.
“It’s unbelievable,” she said. “My husband would have to take days off work to take me to Boston. When I was still working, I would have to miss work to go.”
Wilcox, formerly the manager and executive chef of the Executive Dining Room at Citizen’s Bank in Providence, was diagnosed in 1995.
The name of the center was announced at the ALS Association’s annual Evening of Hope fundraiser in 1998, and came as a surprise to Wilcox.
“It was a little bit overwhelming,” she said. “I really had no idea. It really, really pleased me.”
Already, the center is participating in a drug trial, with a second soon to start. Sachs said medical trials can be helped by the clinic trend, since patients can be monitored as a group instead of individually, as when they are treated by doctors in a private practice.
“You can only do that with an approach where you really know your patients,” Sachs said. “An efficient approach will benefit the patients as well as the knowledge base for ALS.”
Sachs defined ALS as “a degenerative disease of the brain and spinal cord that leads to the wasting of motor neurons and muscles.” The disease became known as Lou Gehrig’s disease because of the publicity it drew when the former New York Yankees first baseman was diagnosed with the disease at the peak of his career in 1939.
ALS affects between six and eight people out of every 100,000; Sachs estimated that 60 people in Rhode Island have ALS.
“[A patient’s life expectancy] depends on where the symptoms present, but approximately 3 to 5 years from the onset of symptoms,” Sachs explained. “Some cases go much more slowly. If the patient elects to go on a ventilator, survival can be prolonged for many years. The disease ends with the deterioration of the breathing muscles.”
ALS has no known cause.
“In about 10 percent of cases it’s an inherited gene,” said Sachs. “In about a quarter of those, the gene is known. In the majority of cases, we don’t know the cause, but we’re looking.”
The center’s monthly support group offers comfort to the patient’s caregivers as well.
“Any honest caregiver is going to tell you that sometimes they’re mad as hell,” said Barbara Dickinson, president of the board of directors of the ALS Association (ALSA), Rhode Island chapter and wife of Brian, who has battled the disease for nine years.
Brian Dickinson, a Providence Journal columnist, has gained national attention for his determination and the innovative methods he has used to continue as a contributor to the newspaper.
“The caregiver is victimized and can have anger, regret, guilt – you’re guilty because you’re not sick,” Barbara Dickinson said. “Those are some of the things we’ve tried to address, not just for the victims of ALS, but also for their caregivers.”
As the disease progresses and patients move from competence to helplessness, communication becomes more and more challenging.
In the advanced stage of the disease, “ALS patients have an inability to express emotion as well as need,” Dickinson said. “They are prisoners with all of their five senses still intact.”
Working hand-in-hand with the center, the ALSA’s loan closet – for which patients donate unneeded equipment for use by others — aids patients in obtaining the equipment they need as their condition changes. Canes, walkers, wheelchairs, etc., are costly, and the disease can progress so rapidly that by the time the patient has one device, he requires another, Dickinson said.
“You move from crisis to crisis,” she said. “There is no stasis.”
She estimated the cost of a patient’s medical care and drugs – before equipment – at $250,000 annually. Most visits to the clinic are uninsured, and are funded by the clinic.
Just last month, Providence Mayor Vincent A. Cianci, Jr. announced that a new van – to be leased from the city – will soon be available to transport patients to and from the center. Patients and their families will also be able to borrow the vehicle for special trips that require more room for equipment than an average car.
The next fundraising project for the ALSA is finding a space that will act as both the group’s offices and a respite center. This new facility would contain at least two fully equipped bedrooms and an around the clock weekend nursing staff to provide caretakers with a break from the rigors of constant care.
Visibility for the disease is one of the most important things the Louise Wilcox ALS Center can provide.
“ALS patients are not in your face because they become so quickly confined,” said Dickinson. “Victims can’t be their own advocates.”
Asked where she gets her strength, Wilcox was brutally honest:
“I don’t find strength every day,” she said. “It’s hard every day.”
