Funded By:
In 1990, the estimated number of individuals with major neuromuscular diseases (NMDs) in the United States ranged from 95,000-122,000. Of these individuals, the number of potential candidates for Department of Rehabilitation services ranged from 57,000 - 73,000 (ages 16-64 years, 60%). In 2002, the estimated prevalence is 400,000, a figure that soars to 4.5 million when individuals with post-polio syndrome are included.
Department of Rehabilitation Counselors have unique challenges when working with clients with neuromuscular diseases. Because the NMD population is small compared to other groups with disabling conditions such as heart disease, Rehabilitation Counselors rarely come into contact with individuals with these diseases. Since that are over 200 distinct NMD, it is even more unlikely that a counselor would come into contact with two individuals with the same type of neuromuscular disease. As for the information a client would be expected to provide about their physical condition, many individuals with NMD cannot provide the kind of specific medical details that would allow a Counselor to assist them effectively. A client may not have received a specific diagnosis beyond a disease category such as “motor neuron disease” or “neuropathy,” and the many diseases within each category have different characteristics that influence functional capabilities and quality of life. The rate of progression is highly individualistic and prognoses for work expectancy / life expectancy are often tenuous and contingent upon a complex set of economic, social, and psychological factors.
The guide has three sections:
• Section 1 : Descriptions of neuromuscular diseases most likely to be encountered by Rehabilitation Counselors.
• Section 2 : Disease progression graphs showing progressive levels of physical impairment. This section contains information about:
1) Anterior Horn Cell Diseases: amyotrophic lateral sclerosis; progressive spinal muscular atrophy; progressive bulbar palsy; spinal muscular atrophies.
2) Myoneural Junction Diseases : myasthenia gravis.
3) Peripheral Nerve Diseases: Charcot Marie Tooth syndrome.
4) Muscle Diseases: Becker muscular dystrophy; Duchenne muscular dystrophy; facioscapulohumeral dystrophy; limb girdle syndrome; myotonic muscular dystrophy; polymyositis and dermatomyositis.
• Section 3: Vocational implications of neuromuscular diseases at different levels of physical limitation.
The disease descriptions and disease progression graphs are organized by major category and then by specific disease. A glossary of simple genetic terms precedes the disease descriptions.
Caution : A counselor's decision on whether or not to provide Department of Rehabilitation services to an individual with a neuromuscular disease is based on many factors. The material is meant to provide information on some of those factors.
The disease progression graphs were developed to give Rehabilitation Counselors a "snapshot” of what often happens to individuals with specific neuromuscular diseases. They are designed as a guide for Rehabilitation Counselors rather than as exact medical descriptions. For more complete information, Counselors are advised to visit the nmdinfo web site at http://www.nmdinfo.net.