Putting Parkinson's disease in its place. (Not-for-Profit Report).

At mealtime, a resident may be "off' and can't eat. Later, at 8 p.m., he may be "on" and ready for a meal. At 2 p.m. the resident may have tremors and be unable to exercise, but at 2 a.m. he's ready to go. People with Parkinson's disease don't necessarily follow anyone's clock. But now, through the collaboration of the Presbyterian Home for Central New York (PHCNY) and the Central New York Parkinson's Support Group (CNYPSG), people with Parkinson's disease and other motor disorders can receive optimum care in a healthcare setting dedicated to their needs.

A 242-bed skilled nursing facility in New Hartford, New York, the Presbyterian Home has embarked on a five-year plan to address the specialized needs of this population. It began when Tony Joseph, PHCNY administrator, attended a CNYPSG seminar. Coming away from that meeting, he realized how little long-term care organizations collectively knew about Parkinson's disease and the many ways in which those afflicted could be helped.

"We are very good at Alzheimer's care, rehab, and serving our general population, but there is so much more we can do for those with movement disorders. Partnering with CNYPSG, we are developing the best strategies to benefit these individuals across the board--from those in early stages who remain independent to those whose disease state necessitates long-term care," says Joseph.

"We believe this is one of the first facilities in the country to focus its care, therapy, and educational services on the Parkinson's population--from adult day healthcare services to outpatient rehabilitation to residential living," he adds. "At present, a partially remodeled wing of the existing facility accommodates these residents and soon, through the procurement of grants and extensive fund-raising efforts, PHCNY will be breaking ground for a high-tech Parkinson's residence."

This new unit will feature current medical and design technology and be ready to incorporate new advances as they develop. "We already have architectural renderings for the rooms, which will incorporate voice-activated computers to control the environment, from raising/lowering the beds to turning the television and lights off and on," says Joseph. Other adaptations include larger beds to accommodate restlessness and help reduce falls. If a fall does occur, the unit design calls for softer floors and the elimination of sharp corners. Motion-controlled faucets and paper-product dispensers, along with self-flushing commodes, will also be of great benefit to this population. Exercise rooms will be located on the unit, so that when a resident can exercise or do activities, that opportunity will be available 24-hours a day.

"Families have been very supportive," adds Polly DiCesare, director of social services. "When we began considering an Alzheimer' s unit in 1988, we relied on caregivers to tell us, for example, what interventions worked for people with Alzheimer's. Now individuals with Parkinson's are giving us direct information on what would improve the quality of their lives." From a social worker's perspective, DiCesare notes that with appropriate outpatient and/or day-care services, people with Parkinson's can function in the community longer. When residential placement becomes necessary, the transition to a unit such as this is emotionally smoother for the individual and provokes less guilt for the family.

While the new resident rooms are still on the drawing board, PHCNY has completed its new Rehabilitation Center, which offers adult day programming; outpatient rehab; and speech, physical, and occupational therapies. Mary Wengert, director of speech pathology services, is a certified practitioner of the Lee Silverman Voice Treatment (LSVT) program, a therapy proven to be beneficial to people with Parkinson's. "By helping someone with this or other neurological disorders improve or maintain the ability to communicate," explains Wengert, "we keep the doors of communication open. This is imperative to supporting self-confidence and self-expression."

While Wengert keeps individuals with Parkinson's talking, Maureen Roe, director of physical therapy, keeps them walking. "One of the items unique to our PT unit is the KAT-balance system, which allows us to track an individual's balance via computer. Through the computer's feedback mechanism, clients can actually see where their balance is off and can follow their personal progress as it is tracked on the computer screen," explains Roe. She notes that the KAT-balance system is more effective with outpatients, since their disease state is less advanced than in the person who needs residential care, although people in advanced stages of the disease do participate, in an attempt to maintain their level of strength and mobility as long as possible.

When Medicare therapy limits have been reached, the Rehabilitation Center offers an affordable venue for clients to continue their rehab. "Our aquatic pool provides excellent alternative therapy through water-exercise groups," says Jo Grogan, RN, director of adult day healthcare. "Many residents elect to pay for the classes; the adult day healthcare program includes the use of the aquatic pool in its fee." Through the adult day healthcare program and the outpatient program, PHCNY can intervene while the disease is in its earliest stages--whether to strengthen the voice or any other muscle group--to slow down the disease process.

Because every discipline is involved in Parkinson's care, all departments work together to individualize care plans. This is extremely important in establishing nutritional patterns for these individuals. As Chris Evans, registered dietitian, explains, "Parkinson's is very complicated and multifactorial; it manifests as a lot of disease states rolled into one." Complications from the disease result in slow chewing and feeding, exhaustion from the physical act of eating, dysphagia, and the risk of pneumonia. "Vomiting, medication-related nausea and dry mouth, constipation, and anorexia all result in extremely nutritionally compromised individuals," says Evans. "So, unlike regular nursing floors, we offer smaller, calorie-dense meals throughout the day to reduce fatigue. Those who can't eat a lot at one meal can have an adequate caloric intake and, hopefully, maintain a reasonable weight." PHCNY has instituted multidisciplinary meal rounds to identify feeding issues and find solutions.

Lucy Viti, RN, DON, directs her staff to use a medication flow sheet that serves a dual purpose. "Because timing is so important in the treatment of Parkinson's, we can track medications and monitor their adjustments to determine time frames that optimize the resident's absorption of the medication," she says. "In addition, this record establishes the resident's medication profile over time, which communicates the current disease stage to staff and helps the physician address possible needed changes in the medication regimen."

"We also plan on incorporating telemedicine into our program," adds Joseph. "With this technology in place, we can capture the physical condition of the patient at any given moment so the physician can have a clearer understanding of the characteristics being manifested at that time and adjust the medication accordingly."

Staffing was an important consideration. Viti explains that it takes a certain personality to work with this population because of the shifts in their functional abilities that can occur every day or, quite possibly, every hour. "All staff members, from the unit manager to nurse aides to the unit housekeeper, were interviewed to make sure they knew the complexities of the people they would be caring for and the challenges they face," says Viti. Eventually, staff across the entire campus will be well educated on this disease and how to interact with those afflicted by it. "Our education programs are broken down to different levels. Our physicians teach our nurses, and neurologists have provided training for our attending staff physicians. And part of our educational component has been developed to cue staff on rehabilitative therapies."

Joseph adds that Presbyterian Home, with the assistance of CNYPSG, maintains a Parkinson's Caregiver Resource Center that anyone--resident, family, staffer, or community member--is invited to use. It houses a wealth of information on the disease in print, audio, and video media. "The library has proven to be a wonderful resource for anyone seeking information on Parkinson's disease and other movement disorders," says Joseph.

As word of the proposed Parkinson's residence spreads, PHCNY hosts tours of its existing unit and explains the services it offers families and other facilities. While moving toward completion of its five-year plan, Presbyterian Home is preparing a "how-to" video and print program to assist and encourage other organizations in learning more about Parkinson's disease and the special needs of those afflicted.

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