The ALS Clinic, an outpatient clinic of North Carolina Baptist Hospital, aims to extend longevity and maximize patient independence and quality of life by offering specialized services to patients diagnosed with ALS.
ALS Clinic Certified as a Center of Excellence
The ALS Clinic was established in March of 1998 and was the first of its kind in North Carolina. The clinic was established to offer patients a comprehensive team approach to treating ALS.
The ALS Clinic was certified as a Center of Excellence by the ALS Association in 2001 and is 1 of only 33 such centers in the country. The ALS Association selects, certifies and supports distinguished regional institutions recognized as the best in the field with regard to knowledge of and experience with ALS.
There are enormous benefits to receiving care at an ALSA-Certified Center of Excellence.
- Funding from the ALS Association and its regional branch, the North Carolina Chapter, allows us to provide experienced and expert care for ALS patients and families.
- We can offer specialty care to meet the needs of those living with ALS, regardless of their insurance status.
- Multidisciplinary care means all necessary health care disciplines are involved in the care of the ALS patient and their families.
- Investigation has shown that specialized ALS care for patients results in a longer lifespan with higher quality of life than is achieved with standard, non-multidisciplinary care.
- We often collaborate with other certified ALS Centers to enhance ALS patient care.
ALS Clinic Schedule & Team Members
Those referred to the ALS Center meet with one of the neuromuscular specialist physicians in diagnostic neurology. If a diagnosis of probable or definite ALS (or an ALS variant) is confirmed, patients are referred to the multidisciplinary services of the ALS Clinic at Medical Plaza – Miller.
The ALS Clinic hosts patients and their families on the third Wednesday and Thursday of each month. Most patients are asked to return about every 3 months depending on their needs and preferences.
On clinic days, a volunteer coordinates an informative lunch and refreshment break, allowing persons with ALS (PALS) and caregivers (CALS) an opportunity to socialize.
Before visits, the ALS Clinic team reviews information collected during routine telephone contacts.
Clinic visits emphasize problem solving over documentation. During a clinic visit, patients discuss their care with their neurologist and meet other members of their care team – all highly experienced in ALS care.
Following clinic days, the team meets to discuss patient problems and works together to find solutions to physical, emotional and financial burdens.
The ALS Clinic team:
- Neuromuscular specialists are neurologists that have special interest and training in the care of ALS patients. They meet with patients and families to develop an overall plan of care and prescribe medication and equipment as needed. These physicians also run the ALS clinical research trials.
- The nurse clinician is a registered nurse experienced in assessing the needs of the ALS patient. The nurse clinician has telephone contact with the ALS patient or their caregiver prior to clinic visits to coordinate patient care with the appropriate therapist. The nurse clinician provides education and nursing support to ALS patients and families.
- The clinic coordinator arranges all ALS Center patient appointments with physicians, therapists and other medical professionals. The clinic coordinator arranges all necessary follow-up tests and serves as a point person for questions and problems. You are encouraged to contact the clinic coordinator at -2309 with any questions regarding scheduling or travel directions.
- The research coordinator may talk with you in advance or during clinic appointments about opportunities to participate in research studies including clinical trials where experimental ALS treatments are tested. Our goal is for everyone to have a chance to contribute to ALS research in some way, but we certainly respect the wishes of those who do not want to do so.
- Physical therapists assist people with ALS in maintaining and building muscle strength by providing exercise programs and assistive devices to optimize function and level of independence.
- Occupational therapy helps people maintain their independence with feeding, dressing, bathing and work performance through adaptive equipment and energy conservation.
- A speech pathologist evaluates a patient's speech and swallowing capabilities. Patients with speech problems may be trained to use alternative equipment for communication. If a patient is having difficulty swallowing, a speech therapist may have suggestions to improve this function.
- The ALS social worker assists with individual and family counseling and stress management. Community resources such as social security, Medicare, Medicaid, home health, hospice, support groups, advanced directives and durable medical equipment are also discussed.
- The nutritionist analyzes a patient's daily caloric intake and investigates any eating and swallowing difficulties. Special diets and nutritional supplements are recommended if necessary.
- An assistive technology consultant is available at the ALS Clinic to assess patients' needs for assistive devices. Equipment is available to help patients obtain a maximum level of independence at home. For example: environmental controls, telephone access, recreation, augmentative communication, and computers.
- The respiratory therapist assesses respiratory status for all patients during clinic and educates patients and families on the use of equipment that can support natural breathing. In addition to being present at clinic, the respiratory therapist is also available for consultation between clinic visits and can perform home visits if necessary.
- The neuropsychologist evaluates cognitive and emotional changes that may occur with ALS and helps patients and family members cope with the disease. Individual and family counseling is available, as well as training in relaxation and self-hypnosis that can be helpful with pain, fatigue, reduced breathing capacity, or to simply enable one to take a break from the situation.
- The ALS North Carolina Chapter representative provides information to patients and families about chapter grants and programs, as well as other community resources.