MYOTONIC DYSTROPHY

Treatment Options

• At the present time, there is no cure or treatment available that can prevent or delay the progression of muscle weakness caused by myotonic dystrophy.
• Staying as active as possible remains the most effective way of maintaining the best physical condition. Rehabilitation specialists (physiotherapist and occupational therapists) can advise individuals affected by myotonic dystrophy and their families on how to create a stimulating environment. Also, they can prescribe an exercise program and aids that can assist an individual to carry out activities of daily living.
• There are medications available that can decrease the effects of myotonia, but they sometimes cause undesirable side effects. Drugs are usually prescribed only when myotonia prevents a person from working or performing daily activities.
• When necessary, surgery is available to clients who have cataracts. The operation, that may require a short stay in hospital, can result in substantially improved vision.
• Speech therapy can provide assistance to a child or adult who has difficulty speaking. An adapted educational environment can promote the development of a child’s abilities within school setting.
• Arrhythmias, dizziness and other symptoms associated with heart problems may be treated with medication when they are causing difficulties.
• If cold lasts for more than two weeks, treatment may be indicated. As well, some people may find it useful to be vaccinated against the flu.

Digestive problems may be decreased by attention to healthy eating habits. Some general suggestions include:

• Eating three meals a day at regular hours.
• Drinking plenty of liquids such as water, fruit juice and milk).
• Eating fiber-rich foods such as whole grain cereals, vegetables and fruit.
• Avoiding very cold foods such as ice cream and iced drinks.
• Chewing food slowly and well.

• A family will be seen by their own family-doctor and possibly, other health professionals. If necessary, they will be referred to a neuromuscular clinic as near to their home as possible.
• Treatment, if any, will vary according to the severity of weakness and the related problems that a person is experiencing. Because the course of myotonic dystrophy is so variable, even among members of the same family, it is difficult to be specific about who will need to be consulted. The following information is intended to serve as a guide to medical professionals with whom you may be in contact.
• The physician (PT) will teach chest physiotherapy techniques to children and adults that will enhance their physical wellness. The physiotherapist helps clients develop individual exercise programs to maintain optimum muscle strength. This program will include the amount of activity that is best for each person. The PT may also be consulted should respiratory difficulties occur.
• The geneticist will help individuals and their families to understand how this disorder has been transmitted within their family, as well as the impact of myotonic dystrophy on future generations.
• The occupational therapist (OT) can help clients learn how to adapt to physical limitation. The OT will be involved, as required, in choosing equipment and to enhance function at school or in the workplace.
• In conjunction with an infant development worker, the OT/PT may have suggestions for activities to stimulate intellectual development of babies and children with myotonic dystrophy.
• The role of the nurse, whether in the clinic or the community, is to work with the family to understand the disorder and its management.
• The social worker, in conjunction with the nurse, provides support to the individual and family member coping with the effects of myotonic dystrophy.