Neurodegenerative Disorders

What are neurodegenerative disorders?

Neurodegenerative disorders occur when nerve cells in the brain or peripheral nervous system lose function over time and ultimately die. The risk of becoming affected by a neurodegenerative disease increases dramatically with age. More individuals are living longer, which may mean that more people may be affected by neurodegenerative diseases in the coming decades. There is a critical need to improve our understanding of the causes of neurodegenerative diseases and to develop new approaches to treatment and prevention.  

• Amyotrophic lateral sclerosis (ALS) also known as Lou Gehrig’s Disease destroys the nerve cells that control muscles in healthy adults, ultimately causing complete paralysis while leaving mental function intact. ALS usually strikes in middle age or later, and men are somewhat more likely to develop the disease than women. Death often comes within two to five years of diagnosis, although some people survive longer. Currently, there is no cure for ALS. Symptoms are numerous and are compounded as the disease progresses, affecting walking, speaking, swallowing, and breathing.  Approximately 5,600 people in the U.S. are diagnosed with ALS each year. The incidence of ALS is two per 100,000 people, and it is estimated that as many as 30,000 Americans may have the disease at any given time.
• Huntington’s Disease (HD) results from genetically programmed degeneration of brain cells, called neurons, in certain areas of the brain. This degeneration causes uncontrolled movements, loss of intellectual faculties, and emotional disturbance. HD is a familial disease, passed from parent to child through a mutation in the normal gene. Each child of an HD parent has a 50-50 chance of inheriting the HD gene. A person who inherits the HD gene will sooner or later develop the disease. HD is a rare disorder. More than 15,000 Americans currently have the disease, but many more are at risk of developing it.
• Parkinson Disease (PD) is a brain disorder that leads to shaking, stiffness, and difficulty with walking, balance, and coordination.  Parkinson's symptoms usually begin gradually and get worse over time. As the disease progresses, people may have difficulty walking and speaking. They may also have mental and behavioral changes, sleep problems, depression, memory difficulties, swallowing difficulties and fatigue. Nearly one million people in the U.S. are living with Parkinson's disease (PD), which is more than the combined number of people diagnosed with multiple sclerosis, muscular dystrophy and Lou Gehrig's disease (or Amyotrophic Lateral Sclerosis). This is expected to rise to 1.2 million by 2030. Approximately 60,000 Americans are diagnosed with PD each year. More than 10 million people worldwide are living with PD.

Speech-Language Pathology Evaluation & Therapy

Speech-Language Pathologists (SLP) have specialty training in evaluating the communication and swallowing needs for individuals with neurodegenerative disorders. Your assessment will be tailored to your individual needs.

Assessments may include:

• Clinical Swallowing Assessment
• Instrumental Swallowing Study
• Language and Cognitive Testing
• Speech Intelligibility Testing
• Vocal Parameters Assessment
• Augmentative Communication Evaluation 

Treatment for many of the speech, language and swallowing disorders associated with neurodegenerative diseases will depend on the symptomatology exhibited, the stage of the disease and on the express wishes of the patient and family.

Other Specialty Services:

SPEAK OUT!® is a clinically proven speech therapy approach developed by Parkinson Voice Project that combines education, individual speech therapy, and ongoing group sessions to help people with Parkinson’s Disease improve their speech and communication and to maintain these improvements.  

Specialty clinics exist at the UR to provide multidisciplinary treatment and management of these neurodegenerative diseases.

ALS Clinic: The focus of care at the ALS Clinic is to preserve independence and communication, allowing patients to enjoy quality of life as long as possible. The Clinic makes this easier by bringing together the varied health disciplines needed to treat ALS patients for a one-day clinic once a month. Neurologists and nurse practitioners, along with respiratory, physical and speech therapists, and representatives from the local MDA and ALSA chapters meet with ALS patients to review the patient's status and make any changes to care as needed.

HD Clinic: The HDSA Center of Excellence provides a team approach to Huntington’s disease care and research. Patients benefit from expert neurologists, psychiatrists, social workers, therapists, counselors and other professionals who have extensive experience working with families affected by HD and who work collaboratively to help families plan the best HD care program throughout the course of the disease.

Parkinson’s Center of Excellence: The Movement Disorders Division provides diagnosis and comprehensive care to people with Parkinson’s Disease and related parkinsonian conditions, The UR Movement Disorders has received designation as a Center of Excellence by the Parkinson’s Foundation,

Additional Information

UR Medicine – Neurology – Neuromuscular Clinic

UR Medicine – Neurology – Movement Disorders

Huntington’s Disease Society of America: http://hdsa.org/hdsacoeuofr

Parkinson Voice Project: https://www.parkinsonvoiceproject.org