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Inside an ALS Residence

Steve Saling demonstrates the many uses of his automation system, which gives him complete control of his environment, inside the Leonard Florence Center for Living in Boston.
The Leonard Florence Center for Living in Boston houses the first long-term care facility in the world specifically designed for people living with ALS (pALS). Providing a level of independence and productivity previously unavailable, the ALS residence aims to improve the quality of life of these individuals.

Funded by the Chelsea Jewish Foundation, the Leonard Florence Center for Living is a state-of-the-art, urban Green House that provides skilled nursing care to individuals and specialized populations, including ALS and multiple sclerosis (MS). The Green House model was developed to deinstitutionalize long-term care by eliminating large nursing facilities and creating homes within a community setting.

The Saling ALS Residence was named for Steve Saling, who was diagnosed with ALS in 2006 at 38 years old. Drawing on a wealth of knowledge gathered during his career as a landscape architect specializing in the design of public space, Saling teamed up with Barry Berman, CEO of the Chelsea Jewish Foundation, to design and build two specialized residences for people with ALS and MS. Each residence has ten private bedrooms and baths with communal kitchen, dining and living areas.

To allow individuals with ALS to be as independent as possible, the Saling ALS Residence is equipped with the latest computer-operated technology. With the assistance of a computer and a sensor that tracks head and eye movements, residents can open doors, close window shades, adjust room temperatures or call the elevator. The showers in the private bathrooms are equipped with lift systems to allow residents to transition from bed to bathroom with greater ease.

 Rehab Care for PALS

"Caring for people with ALS is a continuing education in patience, technology, and allowing the patients' abilities to overcome their disabilities," said Carolyn Marsh, DPT, a physical therapist at the Leonard Florence Center.

The Leonard Florence Center offers residents access to a comprehensive interdisciplinary team of specialists, including: physicians, nurses and nurse practitioners, certified nursing assistants, social workers, physical therapists, occupational therapists, speech-language pathologists and home health aides.

"As a physical therapist, I make sure my patients are in an optimal position to be as independent and comfortable as possible," Marsh said. In addition to conducting seating, mobility and driving assessments, PT for pALS or similar disorders often focuses on the prevention of secondary complications such as joint contractures, skin breakdown and spinal deformities.

Marsh works closely with residents, home care therapists, wheelchair specialists and medical equipment providers to make sure the team meets everyone's needs with the most up-to-date technologies and treatments.

Katie Seaver, MS, CCC-SLP, assures that each resident at Leonard Florence Center has a reliable means of communicating with optimum independence. Because successful communication is key, Alternative and Augmentative Communication (AAC) helps residents partake in life regardless of illness or disability.

Seaver meets with the residents to determine the communication strategies that work best for them. "I begin with simple yes/no responses and progress to high-tech eye gaze technology that not only allows them to communicate, but activate a call bell and control the doors to leave the house," she said.

For the residents who arrive with their own technology, Seaver determines if the system fully meets all communication needs and trains in-house staff accordingly. As the disease progresses, the speech and communication strategies change. "My goal is to make sure they can communicate effectively and accurately with our staff and their families," she explained.

ALS not only affects a person's speech but also his ability to chew and swallow, according to Seaver. "I educate our residents to help them make their own decisions about what food is safe for them to eat as their disease progresses," she said. "As their muscles weaken, we can change the consistency of their foods and drinks to allow them to continue to have the pleasure of eating without any increased risk of choking or aspirating."

Some patients wish to assume the risks associated with eating and drinking certain foods, Seaver explained. "That is every individual's choice," she said. "My job is to provide the information and communicate their decision with the rest of our staff." 

Swallowing therapy is slightly different for people with ALS, Seaver observed. "I make my recommendations for what I feel is safe for a person, then I educate and allow them to decide what they want to do," she said. "Not everyone chooses to continue living with a feeding tube and artificial respiration. Many people wish to carry on with a high quality of life, while it lasts."

Enjoyment of food is a large part of quality of life and managing safe eating requires some sensitivity training on the part of the SLP and staff, Seaver shared. 

Seaver has learned valuable lessons through her interactions with pALS. "First, it's important to be patient," she said. "It may take longer for patients with ALS or any progressive illness to communicate, so I've learned to sit and listen first. It's important not to finish the residents' sentences and or to touch their possessions without asking for permission."

Seaver has learned that flexibility is key in treating this patient population. "Just because I have a goal for an interaction with one of our residents on a particular day, I need to respect their time and their process, and try to reprioritize my plans if needed," she said.

Making the Most of Each Day

"Before coming here, many of our patients felt trapped by their disabilities and were unable to do anything independently," Seaver said. "Now they are able to control their rooms, move around the building, go outside, arrange a trip to join their families at the movies or a Red Sox game or go sky diving. It's life changing."

According to Allie Reilly, RN, BSN, the residents know how to live life to the fullest each day. "The residents have different interests and personalities, but they share the same eagerness to enjoy every day whether it is attending an event, sitting outside on the patio watching the new waterfall, or driving their wheelchairs outside during the first snowfall of the season," said Reilly, who is the nursing supervisor at the Leonard Florence Center.

"The center is a unique place where people living with disorders like ALS can be independent and have an opportunity to follow their passions and hobbies," said Marsh. "At the same time, they are able to socialize and learn from others who are succeeding with strategies previously unknown or unthought-of."

Reilly has assisted residents while traveling to Disney World, skydiving, listening to Bruce Springsteen live and enjoying fireworks from the water on the Fourth of July. In her role as supervisor, Reilly helps to make sure the residence has the staffing in place so residents can attend these events. "The trips give the residents something to look forward to and by participating, the staff members make these events happen so the residents are able to attend, especially our ventilator dependent residents," she said.

The level of care provided at the Leonard Florence Center is important for the ALS residents who are suffering from a terrible disease, Reilly shared. "Alert and oriented young people eventually lose their ability to move their arms and legs and eventually their lungs stop working," she said. "ALS is often described as being trapped in your own body."

If the residents' lungs fail to work properly, then they need to decide whether to continue to live on a ventilator, or not. Quality of life doesn't need to decline for those who are vent dependent, according to Reilly. "Our residents get out of bed and off of the unit frequently; they attend house meetings where their voices are heard; they have showers two or more times a week in their private rooms and bathrooms in dignity," she said. "We provide a solid staff-to-patient ratio to ensure that the patients get all of this care and more."

Bringing Awareness to a Terrible Disease

Reilly watched her grandfather pass away from ALS when she was in high school. "The most I understood about the situation at the time was that there was no cure," she said. "His doctors told him he had three to five years to live. He lost his fight with ALS on hospice with dignity, surrounded by loved ones."

Several residents who decided against the ventilator have succumbed to the disease and they were able to do so with dignity and in peace, with loved ones by their sides, according to Reilly. "I hope the recent awareness brings about a cure so our patients don't have to make that difficult decision," she said.

Marsh believes the current spotlight on ALS creates an opportunity for those living with ALS or caring for pALS to advocate for opportunities to gain the independence that is possible with today's technologies. "It also provides an occasion for new technologies and residences, and increased awareness of pALS needs to become the forefront of ALS care," she said.

For more information on the Steve Saling ALS Residence or to donate to the Sixth Annual Walk for Living being held on September 28, 2014, visit www.walkforliving.org.

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