2003 Conference Proceedings

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Carolyn P. Phillips and Christopher M. Lee
Tools for Life - GA Tech Act
1700 Century Circle, Suite 300
Atlanta, Georgia 30345
Phone: (404) 638-0389
Fax: (404) 486-0218
Email: Email: carolynpphillips@mindspring.com
Email: Email: cchristopherlee@mindspring.com

Assistive Technology offers hope for many people with degenerative neurological disorders. In order to understand the power of appropriate assistive technology for people with degenerative neurological disorders (DND) one must first understand the basics about degenerative neurological disorders. There are many degenerative neurological disorders. We will focus specifically on Huntington's disease, Amyotrophic lateral sclerosis and Multiple sclerosis. We will examine the disease process, consider AT to meet the individual's needs, and explore strategies & solutions in successfully matching individuals with AT.

Huntington's Disease (HD) is a devastating, degenerative brain disorder for which there is, at present, no effective treatment or cure. HD slowly diminishes the affected individual's ability to walk, think, talk and reason. Eventually, the person with HD becomes totally dependent upon others for his or her care. Huntington's Disease profoundly affects the lives of entire families: emotionally, socially and economically.

Early symptoms of Huntington's disease may affect cognitive ability or mobility and include depression, mood swings, forgetfulness, clumsiness, involuntary twitching and lack of coordination. As the disease progresses, concentration and short-term memory diminish and involuntary movements of the head, trunk and limbs increase. Walking, speaking and swallowing abilities deteriorate. Eventually the person is unable to care for him or herself. Death follows from complications such as choking, infection or heart failure (Huntington's Disease Society of America).

Amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig's disease in the USA, is a degenerative disease of the upper and lower motor neurons in adults. In ALS, the motor neurons (nerve cells in the brain. brain stem. and spinal cord that control movement of the skeletal muscles) gradually degenerate, resulting in progressive weakness and functional loss of involved muscles. The muscles affected may include muscles of the limbs and trunk as well as those for speaking and swallowing, although not everyone experiences speech and swallowing problems. Which muscles lose function depends on which motor neurons are invoked. Muscle weakness initially begins in one group of muscles, then -gradually spreads to other groups of muscles, striking in a random but predictable fashion. The pattern of muscle deterioration and rate of progression vary widely among persons with ALS. Invariably, ALS results in progressive respiratory muscle weakness and trouble breathing.

Multiple sclerosis (MS) is a chronic, unpredictable neurological disease that affects the central nervous system. MS is not contagious and is not directly inherited. It is not considered a fatal disease. The majority of people with MS do not become severely disabled. However, those that are severely affected have symptoms that range widely and effect their daily activities significantly. There is no cure for MS yet, but drugs can help slow the course and/or symptoms in some patients.

Huntington's Disease, Amyotrophic lateral sclerosis and Multiple sclerosis manifest in different ways in each individual. However, there are similarities we can learn from in finding appropriate AT solutions. As brain cells become depleted, problems may develop in the following three areas: motor control (movement); cognition (thinking); and behavior. Speech and swallowing problems arise when the centers of motor or cognitive control are affected, causing muscle weakness or discoordination. Individuals may also have problems with memory, sequencing, new learning ability and problem solving. AT solutions addressing these areas of difficulty may be high-tech, low-tech or a combination of both.

Focusing on problems with communication and cognition, AT can assist people to compensate for some of the problems they might be experiencing. It is important to evaluate a person's ability to use augmentative or alternative communication devices and techniques. These devices and techniques can be as simple as a word/picture board, or more complex, such as an electronic device that speaks for the person. After determining a person's level of ability for using such techniques, the process begins to focus on personalizing the technique or method of communication.

Communication is just one key to independence. Understanding the disease process and identifying appropriate AT solutions can assist people with degenerative neurological disorders (DND) in communication and many other areas of daily activity. For people with Huntington's Disease, Amyotrophic lateral sclerosis and Multiple sclerosis, Assistive Technology is undeniably linked to independence.

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