Combined Specialist Care for Motor Neuron Disorders
Our clinic, the Motor Neuron Disease/ALS Clinic, is sponsored by the Muscular Dystrophy Association and ALS Association and provides a multidisciplinary clinic serving the needs of individuals with a diagnosis of:
We recognize that ALS is very challenging, and we are here to help you meet these challenges with the combined care from several specialists.
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What Are Motor Neuron Disorders?
Motor neuron diseases (MNDs) are a group of neurological disorders that get worse (progress) over time. MNDs destroy motor neurons, which are the cells that control muscle activity for body functions like:
- breathing, and
Normally nerve cells in the brain (upper motor neurons) send messages to nerve cells in the brain stem and spinal cord (lower motor neurons) that tell the muscles how to move; however, when these signals are broken or disrupted, then the muscles don’t work.
When muscles are not used because the signals between upper motor neurons and lower motor neurons are disrupted, the muscles gradually weaken and begin to waste away. They also start twitching uncontrollably (called fasciculations).
Muscles in your arms and legs can also develop stiffness, or spasticity, making movement slow. Eventually, as the condition progresses, it can be hard to control voluntary movement.
Upper Motor Neurons Vs. Lower Motor Neurons
Upper motor neurons are located in the brain and tell the brain stem and spinal cord what to do to control movements like walking or chewing. Corticospinal neurons is another name for upper motor neurons.
Lower motor neurons are located in the brain stem and spinal cord and control the movement of the arms, legs, chest, face, throat, and spine. Anterior horn cells is another name for lower motor neurons.
The Motor Neuron Disease/ALS Clinic is comprised of the following disciplines in order to help you and your family with the often multiple areas of need:
- ALS Association Representative—The Motor Neuron Disease/ALS Clinic is sponsored by the ALS Association. An ALS representative greets patients at the clinic, discusses equipment needs, provides equipment from the loan closet as needed, and can make home visits.
- Genetic Counselor—A genetic counselor is available to discuss the genetic aspects of your condition and obtain a multi-generation family history. When appropriate, the genetic counselor will discuss the benefits, risks, and limitations of genetic testing for motor neuron diseases and the possible implications and importance of the information to you and your family members.
- Medical Assistant (MA)—A medical assistant will check you into the clinic and obtain vitals and identify the areas of concerns that you wish to address during your visit. They will assist with scheduling and follow up.
- Muscular Dystrophy Association Representative—The Motor Neuron Disease/ALS Clinic is sponsored by the Muscular Dystrophy Association (MDA). An MDA representative greets patient at the clinic, discusses equipment needs and provides equipment from the loan closet as needed.
- Neurologist—The role of the neurologist is to put together the suggestions from the clinic team and answer questions about all aspects of ALS.
- Occupational Therapist (OT)—The OT can help you with your activities of daily living, such as eating, dressing, bathing, writing, shopping, work, and leisure activities. Compensatory strategies or adaptive devices may be recommended to help you maintain independence and improve quality of life.
- Pharmacist—The pharmacist will review your medications to help optimize therapy and review possible side effects. The pharmacist can also help with medications for symptoms of ALS and answer any questions on medications for ALS.
- Physical Therapist (PT)—The PT can help you with your mobility activities, such as walking, getting in and out of bed or getting out of a chair. The PT will advise you on a safe effective exercise program. The PT recommends assistive devices to ensure safety in the home and community to decrease your fall risk.
- Pulmonologist—A pulmonologist is available to address respiratory concerns and assist patients using a ventilator.
- Registered Dietician (RD)—A RD is available to assist with ensuring you attain proper nutrition and makes sure you are educated on proper diet.
- Registered Nurse (RN)—A RN will aid in the coordination of patient care and will facilitate the appropriate intervention for the patient’s quality of life. The RN also stands as the “central person” and point of contact for concerns and questions between appointments in the ALS clinic and is able to contact others within the multidisciplinary team when necessary
- Research Coordinator (RC)—The RC represents the doctors and will introduce recent ALS research and studies to you and family members. One study is designed to obtain DNA (one-time blood draw) and family pedigree (optional) from all patients and family members to be used for future research on ALS. The RC can also assist you with questions in regards with recent ALS research.
- Respiratory Therapist (RT)—The RT will obtain measurements of your respiratory function and will make recommendations on equipment for respiratory function.
- Social Worker (SW)—A SW is available to address psychosocial concerns for you and your family. The SW will address questions about Advanced Directives. SW is also available for counseling by phone or email outside of clinic hours.
- Speech Language Pathologist (SLP)—The SLP is able to assist you primarily with eating safely and communicating with family and friends. SLP is able to help with strategies to eat safely and may perform swallow assessments to further guide this process. SLP is also able to make recommendations regarding communication systems to continue interactions with others. SLP will also assess cognitive and behavioral changes.
- Wheelchair Assistant—Assistants are available to help assess the patients’ needs for mobility equipment. We will do any repairs that we can do in clinic as well. When a patient has a need for equipment, we go over the process and answer questions. We then facilitate the referral to the proper company that can do their insurance.
MDA-Sponsored ALS Family Support Group
Date: First Tuesday every month
Location: 5709 S 1500 W
Taylorsville, UT 84123
Peer Support Group for Caregivers
Date & Time: Second Thursday of each month, 7 pm
Location: Murray City Senior Center
10 E. 6150 S.
Murray, UT 84107