The Neuromuscular Diseases Program of the Centre de réadaptation Marie Enfant (CRME) is intended for children and teenagers who have been diagnosed with a neuromuscular disease.
Definition
Neuromuscular diseases are progressive, degenerative and, for the most part, incurable conditions that mainly affect the motor unit, i.e. motor neurons of the spinal cord, peripheral nerves, neuromuscular junction and muscles. Irrespective of type, they affect ambulation. Their degenerative characteristic must always be considered because of how they steadily affect activities of daily living and because of the emotions they evoke in everyone involved (child, parents, siblings, etc.).
- List of causes linked to neuromuscular diseases (PDF Document - in French only)
Several factors also affect the child’s social participation:
- Primary personal factors
Depending on the type of disorder, the deterioration of functional control gradually alters the child’s abilities, which manifests itself through decreased effort tolerance; increased fatigue; increasing loss of strength, tactile and vibratory sensitivity, ambulation, balance, coordination.
A developmental disability or a severe learning disorder may sometimes accompany neuromuscular diseases.
The psychological impacts of neuromuscular diseases are also of great significance:
« Adjusting to a neuromuscular disease triggers many contradicting emotions such as resignation, passiveness or helplessness, and also rage, anger, frustration or intolerance. Some people manage to reach a point of pain withdrawal, regret or limitations given the severity of such a degenerative disease on a child’s life. Denial and hope are also coping mechanisms. ». (Vanasse and al. 2004. p. 88).
Primary Factors That Affect the Social Participation of Children With Neuromuscular Diseases (PDF Document)
- Impact on Social Participation
The impact of neuromuscular diseases on a young child’s social participation does not necessarily begin at birth. All depending on the child’s deterioration profile, situations of handicap may not occur until the age of two, eight or even fifteen years.
Abilities will change as organs begin to deteriorate with the passing years. Engaging in activities that the child and family are accustomed to will be less and less possible. Carrying out daily living activities and practicing the social roles that both the child and parents favour will gradually change as different personal and environmental factors interact.
In some types of conditions, the progression of symptoms may or may not be visible. This does not mean that they do not have any significant and persisting effects on the child’s ability to carry out a number of daily living activities. Furthermore, these effects are not static and can change in a slow and gradual manner. Having to constantly readjust to functional losses requires an important amount of skill from the child, his/her entourage and service provider.
Pamphlets - in French only