The most challenging aspect of living with multiple sclerosis (MS) is the condition's effect on daily life. For many patients with MS, the main goal is to be as independent as possible.
The MS outpatient program at Scripps Memorial Hospital Encinitas in Encinitas, Calif., features a comprehensive functional evaluation that assesses everything from functional mobility to swallowing. The program provides a forum for physical, occupational and speech-language therapists to assess each patient as a team and develop a comprehensive picture of how that patient functions in daily life.
"The disciplines work together to provide a personalized plan of care for each patient," explained Tammy Kwan-Weyman, PT, DPT, physical therapist in the outpatient neurologic department at Scripps Memorial Hospital Encinitas. "We communicate with each other to ensure the greatest continuity of care."
For already-diagnosed patients whose condition may have changed since their original diagnosis, the program offers reevaluations to identify limitations and provide new recommendations.
Customized evaluations assess: functional mobility; gait/balance safety; daily living activities and adaptations; patient/family education; reentry into the community; driving ability; energy conservation; work simplification; bladder-control issues and cognitive/linguistic and swallowing functions. The neuro outpatient department at Scripps Memorial Hospital Encinitas also offers patients driving and wheelchair evaluations.
Reinforcing Rehab Messages
At Scripps Memorial Hospital, patient evaluations are often carried out by several disciplines, according to Avi Kouzi, MOTR/L, occupational therapist at Scripps Memorial Hospital Encinitas.
"The approach gives clinicians the opportunity to discuss best practice in a comprehensive way for the benefit of each patient," he said. "Occupational, physical and speech therapists may reinforce strategies and techniques learned in other disciplines to facilitate the highest level of progress and independence in each patient's daily life."
Individuals with MS often present with deficits in language, memory, executive function skills and attention and may also have speech or swallowing disorders. Speech therapy helps these patients develop compensatory strategies for their speech, language and cognitive deficits and thereby improve or maintain their ability to fulfill personal, work and community roles and responsibilities.
By developing an individualized program tailored to address specific patient needs and/or deficits, OTs help patients perform activities of daily living (ADLs) and meaningful/functional tasks with greater ease and independence. "We educate patients on energy conservation strategies, upper extremity exercises, adaptive equipment and adaptive techniques to maintain and improve activities of daily living," Kouzi stated.
|Tammy Kwan-Weyman, PT, DPT, outpatient neurologic department and Avi Kouzi, MOTR/L, Scripps Memorial Hospital Encinitas in Encinitas, Calif.
Photo: Scripps Memorial Hospital Encinitas.
PTs help patients with MS improve strength, endurance, balance and flexibility by developing personalized exercise programs to maximize functional potential, according to Kwan-Weyman. Additionally, PT helps prevent many of the orthopedic and secondary complications that can occur with prolonged inactivity.
"A continuum of carryover of adaptive techniques facilitates internalization of these techniques and promotes increased independence and satisfaction in all areas of a patient's life," stated Deepty Mehra, OTR/L, supervisor of outpatient neuro rehab, Scripps Memorial Hospital Encinitas.
To illustrate the overlap of disciplines, Mehra explained that OT reinforces the gait stability cues that a patient learns during PT and conversely, PT carries over the energy conservation techniques that a patient learns in OT. Similarly, OT and PT carry over the cognitive strategies that a patient learns during speech therapy.
"Although a patient may perform well on cognitive testing during a speech therapy evaluation, for example, the occupational therapist may note during her own assessment that the patient had difficulty sequencing the steps for cooking a meal and relay that information to the speech pathologist," explained Emily Beckman, MA, CCC-SLP, speech-language pathologist at Scripps Memorial Hospital Encinitas.
In this case, Beckman said, a cognitive impairment that may have slipped by was identified because of the team approach to assessing individuals with MS.
If patients need memory strategies to help them remember to exercise or brush their teeth, for example, then all disciplines work together to come up with the method that will best serve the patient, shared Kwan-Weyman.
Although each patient with MS has specific and often unique goals, most patients hope to increase functional safety and independence with activities of daily living, improve household mobility, and resume meaningful activities, said Kouzi.
"Therapy works with the patient as a whole person," observed Kouzi. "Though I do care about each patient's EDSS score, I care more about what it means for the individual."
The Expanded Disability Status Scale (EDSS) is a rating system that is frequently used for classifying and standardizing the condition of people with MS.
Kouzi wants to know if the score means that a patient is unable to walk with her spouse on the beach because she is too fatigued. If that's the case, then Kouzi will work with the patient on energy conservation. Similarly, he'd plan to address upper body strength for the patient who cannot hug his granddaughter and work on sequencing, safety and task adaptation for the patient who is no longer able to cook Sunday dinner.
"The main goals for these patients are to be able to walk at their highest functional potential and improve their balance to minimize fall risk," said Kwan-Weyman. "To address fall risk, PT helps patients improve balance in a variety of situations and environments. Patients often need to learn that they are safer and more independent while using an assistive device."
In their quest to be as independent as possible, patients with MS may need speech therapy to help develop memory strategies to manage appointments and medications, according to Beckman. "Some patients may need to use speech strategies to communicate intelligibly with people in the community," she said.
For other patients with MS, learning to do one thing at a time and take breaks throughout the day may help avoid extreme cognitive fatigue.
"For patients who are not independent, goals may focus on training caregivers in communication strategies and ways to continue to stimulate language and cognitive skills," said Beckman.
Challenges of MS
According to Beckman, the biggest challenge for patients with MS is the progressive nature of the disease. "It's often difficult to predict what level these patients will be functioning at in a few years," she explained. "Therefore, they need to be re-assessed often, and will require further therapy to address changing functional abilities."
Another common challenge, Kouzi told ADVANCE, is regaining the feeling of empowerment that is often sapped by living with a chronic disease. "Our goal in OT is to give patients the tools and to teach them how to regain the highest level of function on a daily basis," he said.
For patients who might be struggling with the loss of feeling in their fingers, OTs can teach them how to use adaptive equipment and instruct on strategies to brush teeth and wash hair and safely cook and care for themselves.
"These are significant challenges for the patients, and when they learn how to meet them, we often see a positive snowball effect," Kouzi said. "Patient satisfaction improves when they are empowered to live a full life in spite of an unpredictable disease."
Kwan-Weyman explained that fatigue and lack of motivation are often the biggest challenges for patients. "Patients need encouragement and reinforcement to overcome these barriers," she said. "Many patients need to hear that it's OK to take frequent rest breaks as needed and to make an exercise or activity fit into their lives, not the other way around."
Educating Patients with MS
Education plays one of the most important roles in the treatment of patients with MS, whether the goal is climbing mountains or household stairs, shared Kouzi. Patients benefit from education regarding available services, resources and support groups, as well as disease-specific information on energy conservation and symptom management.
"We ensure that patients are connected with the right information in order to facilitate optimal and realistic management of MS," Kouzi said. "They live with this disease every day, and often, the patient and/or his family can process quite a bit of advanced material."
"If we underestimate how much information these patients need, then they may start searching on their own but miss the best information and resources available," Kouzi explained. "I provide additional resources as each patient is ready for the next step."
According to Kwan-Weyman, the therapists need to dispel myths on occasion. "The old belief that exercise should be avoided to minimize over-fatiguing muscles is untrue," she explained. "There is evidence that shows that short, frequent bouts of activity can help to improve muscle strength, endurance and balance which results in an improved quality of life."
Patients and their families often do not realize how common speech, language and cognitive deficits are in individuals with MS and they feel a sense of relief when they realize they are not alone, shared Beckman. "It's also beneficial for patients to be educated in compensatory strategies that allow them to function at a higher level," she said.
In addition, the therapists refer patients who need additional services to the local chapter of the National Multiple Sclerosis Society. "A patient recently borrowed a wheelchair from the MS Society for a few days to attend a family reunion at Disneyland," Mehra said. "Another patient received financial assistance to pay some bills."
Lessons from Patients
"There is a large functional variance in patients with MS, and each patient teaches me something new," Kouzi explained. "There are often several ways to complete a task safely and successfully, and each patient may have individualized paths to a better life."
According to Mehra, the emotional aspect of MS often goes unnoticed. "These patients often manifest sadness about their loss of independence and decreased quality of life into decreased confidence about functional abilities and sense of worthiness in life roles with family, work and society," she said.
Caregiver burden is another issue that often is not addressed with this patient population. "The integral and intricate web of the patient, family, neurologists and therapists can optimize the patient's potential for functional recovery in terms of ADLs, endurance, gait, swallowing and cognition," Mehra said.
"Patients appreciate encouragement and positive reinforcement," Kwan-Weyman said. Once these patients realize how much they are capable of, then they want to work to get better. Kwan-Weyman observed that a simple change, such as wearing a leg brace or using a stair lift, is enough to help a patient to participate in functional activities with greater independence.
Beckman is continually surprised by how well patients with MS and their families adapt to challenging circumstances. These patients are motivated to maintain their independence and are quick to use the education, strategies and exercises provided by the therapy team.
"I have learned a great deal about the human spirit, perseverance and the sense of community that is alive within those affected by MS," Kouzi said.
Rebecca Mayer Knutsen is on staff at ADVANCE. Contact: firstname.lastname@example.org