Vocational perspectives and neuromuscular disorders

The present study analyses the actual occupational situation, vocational handicaps and past labour career of a group of about 1000 Dutch patients suffering from a neuromuscular disorder (NMD). On the basis of the likelihood of a substantial employment history and sufficient numbers of patients, four types of NMD were selected: dystrophia myotonica (DM), hereditary motor and sensory neuropathy (HMSN), spinal muscular atrophy (SMA) and myasthenia gravis (MG). Results show that a labour career is in reach of most NMD patients, even for those with severe limitations. It is concluded that physical limitations seem not to be decisive in that respect. The loss of the quality of communication, the loss of mental abilities and the effect of the diseases on the facial expression, as with some DM patients, are also important for chances on the labour market. Though the labour participation of NMD patients tends to decrease after the age of 34, the availability of work adaptations makes it possible to prolong the labour career. Analysis of the actual work situation of NMD patients shows that both disorder-related limitations and work characteristics play an important role in the amount of physical work problems encountered. It is argued that physical labour has to be regarded as generally unsuitable for NMD patients. This has implications for the sort and level of education to be attained by NMD patients. Career counselling as a focus point for the choice of an educational programme may improve labour market opportunities as well as quality of employment of NMD patients. Allowing for and accepting the possible effects of the disorder in the work situation are considered to be important in respect to labour participation and work satisfaction of workers with NMD. Reducing time pressure demands and increasing the freedom to organize one's work, are measures to be given especial consideration.