Atrium Health Wake Forest Baptist ALS Certified Treatment Center of Excellence

• ALS usually starts with painless weakness developing in one arm or leg and is commonly mistaken for carpal tunnel syndrome or a pinched nerve in the neck or back.
• About 25% of the time ALS starts with slurred speech or swallowing problems often mistaken for the lingering effects of a cold or a stroke.
• Muscle cramps and small twitches in the muscles (fasciculations) are very common in ALS but also in healthy people.
• Weakness spreads to other parts of the body in a somewhat predictable pattern but the rate of progression varies between individuals. Eventually, the weakness spreads to the muscles of swallowing and breathing.
• The nerves and muscles of the heart and eyes are not affected. Bowel-bladder control and sexual function are largely preserved.
• Some PALS experience spells of crying or laughing that are not in keeping with their emotions. This is called pseudobulbar affect (PBA) and can be treated effectively in most cases.
• About 10% of PALS develop major behavioral or cognitive changes such as being impulsive or self-centered, making poor decisions, and having difficulty planning. This is called fronto-temporal dementia (FTD) and is different from Alzheimer’s dementia since memory is not prominently affected.

• A neurologist establishes an ALS diagnosis by discovering a characteristic history of progressive weakness in the setting of physical examination findings that include weakness, muscle atrophy or twitching (fasciculations), and increased reflexes. Not all ALS patients develop all of these findings.
• Nerve conduction studies and electromyography (EMG) are helpful to rule out other causes of muscle weakness. Several nerves are electrically stimulated to determine if the nerves are healthy, and a needle is inserted into several muscles to look for signs of nerve damage.
• MRI is often performed to rule out tumors, strokes, or pinched nerves that can mimic ALS.
• Blood tests are performed to rule out muscle diseases or other conditions that can mimic ALS.

The ALS Clinic has a team approach to ALS care that improves life expectancy and quality of life. Some ALS medications aim to slow the progression of the disease, while others are given to minimize the symptoms of the disease.

Other medications can be prescribed to control symptoms in ALS such as muscle cramps, excess saliva, behavior changes, depression, constipation, insomnia and anxiety.

Those referred to the ALS Center are usually evaluated by one of the neuromuscular specialist physicians in the Neuromuscular Medicine Clinic at 500 Shepherd Street, Winston-Salem, NC . If a diagnosis of ALS is confirmed, patients are referred to the ALS multidisciplinary team clinic at Medical Plaza – Miller.

We strongly encourage all adult people living with the patient and any other direct caregivers to attend the visits.

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.

Over approximately 2-4 hours in the ALS Clinic, you will have the opportunity to meet with multiple team members (therapists, nutritionists, social workers, and doctors) with the goal of maintaining independence and safety for patients and supporting caregivers. Team members assess each patient and offer specific therapies or medical equipment as needed. You are encouraged to bring pictures of problem areas for access at your home and to bring any portable equipment with you for adjustments.

The team meets at the end of the day to discuss patient problems and find solutions to physical, emotional and financial burdens.

Most patients return every 3 months depending on their needs and preferences. Assistance with transportation can often be arranged and telehealth visits are available if travel is not possible.

• 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 336-716-2309 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.