Empowering individuals with MS and disability

If there was one thing Kathy Northam would choose to have back, it would be her physical independence. Multiple sclerosis (MS) has taken that away from her.

Northam now lives in a long term care facility in Omaha, Nebraska, and at age 70, appears young compared to the other residents of the facility. A brain infection left her with a severe speech impediment, minimal use of her right side and a tremor. She also has difficulty walking and relies on a wheelchair most of the time, which she is unable to maneuver on her own.

The Nebraska Medicine Multiple Sclerosis (MS) At Home Access (MAHA) Program is doing what it can to help restore some independence to Northam and connect her to the appropriate resources to bring dignity back to her life. The MAHA Program was started by the Nebraska Medicine and University of Nebraska Medical Center (UNMC) MS clinic approximately six years ago to provide specialized care to individuals with MS who have significant disability.

They helped advocate for a hip replacement several years ago that alleviated severe hip pain and helped improve her mobility. They have advocated for a number of issues at her long term care facility that has helped Northam retain more independence including stand transfers vs. lifts and participation in a horse therapy program that helped her with stability and balance.

“About 25% of MS patients have a significant amount of disability – so much so – that it is extremely difficult for them to even leave their homes,” says Kathleen Healey, APRN, PhD, Northam’s primary neurology and MS provider who played a key role in starting the MAHA Program. “Kathy’s care like many others is very complex. Care is different because patients have so many challenges that can’t necessarily be addressed at a single traditional clinic appointment. Medical issues may include anything from speech impediments, bladder and bowel dysfunction, mobility issues to cognitive dysfunction. Through the MAHA Program, we come to the patient, in their environment, whether that be in their home or to a nursing facility, and address these issues and connect them with other resources in the community that can help.”

Rana Zabad, MD, neurologist and director of the MS clinic, says MAHA fulfills a vital need for these patients. “The MAHA Program fills an enormous gap in the care and treatment for those with advanced disability due to MS who cannot navigate the medical system because of their physical limitations. We are advocates for their care. We take a deeper look at both their physical and psychosocial needs and we make sure the patient and patient’s caregivers play an important role in the decision making process.” 

The program has been so successful that some patients have regained some control over their body and lives by participating in the Exercise, Advocacy, Socialization and Engagement (EASE) Program, established by Healey in partnership with the MS Forward Gym, notes Dr. Zabad. Recently, the EASE Program was granted the Linda Morgante Award for Hope by the International Organization of MS nurses (IOMSN).

MS is one of the most common chronic neurologic disorders of the central nervous system. It can cause a myriad of symptoms including walking problems, muscle loss, sensory loss, vision impairment, bowel and bladder dysfunction, cognitive difficulties and fatigue, among many others. Symptoms can come and go. As the disease progresses, they can become permanent. For some, like Northam, MS can lead to severe disability.

Living in a long term care facility has been a major life change for Northam. A single mother of three children by age 40, she quickly learned how to navigate life’s challenges on her own. She pursued a master’s degree in speech pathology and shortly thereafter, became a full-time speech pathologist.

She painted her house, learned how to fix electrical and plumbing problems and put three children through college.

All the while, unbeknownst to Northam, she was suffering from MS. Kathy now believes that she had the disease as early as age 20. For 30 years, she lived with strange and intermittent symptoms that would include weakness in her legs, foot drop and occasional tripping and falling. She dismissed the symptoms to clumsiness.

It wasn’t until 2002, when Northam experienced an eyesight problem common in MS patients called optic neuritis, that she was finally diagnosed.

By this time, however, the disease had progressed and become more aggressive. Over the next few years, her symptoms grew worse. She was put on several MS drugs to help manage the symptoms, but became intolerant to the most commonly used therapies. She began walking with a cane and later required a wheelchair. In 2006, a breakthrough drug called natalizumab (Tysabri®) became available. While the drug can be very effective in preventing MS relapses, it also carries the risk of causing a severe brain infection called progressive multifocal leukoencephalopathy (PML).

The drug worked wonders for Northam. She decided the benefits outweighed the risks. But then the worst happened. After several years, Northam was struck with the brain infection that left her severely disabled. She had to quit her job and eventually was moved to a long term care facility.

Getting Northam to her doctor’s appointments was extremely difficult, says her sister Judy Haney, and had almost become impossible. “We didn’t feel like she was getting the care she needed,” she says.

That’s when they heard about the Nebraska Medicine MS clinic. They were quickly connected to MAHA Program and started care under Healey’s direction. Healey visits Northam every few months and also attends quarterly meetings with Northam and the long term care facility staff to help educate them about MS and care of patients with MS. Other members of the Northam's MS clinic team include Aubrie Lindner, medical assistant; Renee Steward, APRN; and Lauren Wilson, social worker intern. 

Healey says that Northam, who was one of her first patients under the MAHA Program, has taught her so much about MS disability and how to treat patients with dignity. “Kathy has been an inspiration for everyone,” says Healey. “She never gives up and has always advocated for herself, and others by raising awareness of these challenging issues.”

“I just want to be treated like a person,” says Northam, who donned a shirt that said “wild child” along with purple hair, one of the few ways she has left to express her individuality.

"Since Kathleen and her team took over Kathy’s care, we feel more confident that she’s in good hands,” says Haney. “She is so knowledgeable about MS and all of the latest advances. Having her come to the facility to see my sister has made all of the difference in the world.”

“They are all amazing,” says Northam’s sister Jane Kelley. “They treat her like a human being—as an individual who has needs like everyone else.”

It is the dedication of the staff to their patients and their well-being that really separates the clinic from others, notes Dr. Zabad. “We’re committed to our patients from diagnosis to death,” she says. “We get to know our patients on a personal level because we’re not just providing MS therapy, we’re providing a comprehensive approach to care that addresses the physical, psychosocial and economic situation of each patient. Because MS affects each person differently, treating the whole person and their individual symptoms can make a significant difference in their quality of life.”

The MS clinic is the only affiliate of the National Multiple Sclerosis Society in Nebraska. It is also a part of the Consortium for Multiple Sclerosis Centers, a network of more than 250 MS centers that endorse a strong, multidisciplinary approach and full continuum of care.