Your Health Care Team
In order to remain as functional as possible for as long as possible, you will need a supportive, patient-centered health care team who understands neuromuscular disorders, your personal situation, and the options that will be available to you. As time goes by you will need to work with your healthcare providers to treat various symptoms of your neuromuscular disorder and adapt to an array of functional changes.
Adult or paediatric neuromuscular clinics
These clinics provide access to health care professionals who are knowledgeable about neuromuscular disorders and work together with you, which is a very important factor in effectively managing your condition. There are a number of neuromuscular clinics across Canada that care for patients through an interdisciplinary team approach, which means the people working in these clinics come from many different health care professions. You very well may have received your definitive diagnosis of a neuromuscular disorder in one of these clinics.
In some communities, the same health care professionals may be available in private practices or through homecare community programs.
Contact information for clinics and centers in Canada specializing in neuromuscular disorder management can be found by clicking here or by calling Muscular Dystrophy Canada at 1-866-687-2538.
Your doctor’s tasks may include the following:
- Explaining the diagnosis and possible progression and treatment disorder;
- Making necessary referrals to, and consulting with, other healthcare providers to best manage your care;
Discussing the course of action you wish to take if respiration failure occurs.
Your doctor will refer you to a neurologist, a specialist in diseases of the nervous system who can confirm a diagnosis of muscular dystrophy or any other neuromuscular disorder.
Between them they will:
- Outline types of treatment options available;
- Encourage the setting of short-term goals;
- Help you preserve a positive self-image and maintain your morale;
Work with you to identify specific needs and concerns and refer you to therapists who may be able to find solutions.
Nurse Clinician/Registered Nurse (RN)
A nurse clinician generally analyzes your data, and then draws up and implements a care plan. Other nursing functions may include the following:
- Explaining terminology and techniques;
- Teaching skills and providing demonstrations;
- Evaluating skill levels and reviewing procedures;
- Addressing questions and concerns;
- Encouraging and promoting decision-making by the people with neuromuscular disorders and their families;
- Liaising with community organizers;
- Making referrals;
- Limiting the development of complications;
Providing nursing interventions if possible problems arise;
Occupational Therapist (OT)
OTs help you maintain health, and increase independent function by using self-care, work, and play activities. In addition to this, OTs teach people with neuromuscular disorders how to compensate for their physical limitations and adapt to daily living needs. Occupational therapists work with doctors, nurses and other health care professionals in setting up different programs specific for each client. The health care professionals work together to ensure the client does not come to harm and to help with creating and implementing the program. They are also helpful in assessing clients for things that could assist with functioning on a day-to-day basis, such as mobility aids (ie. wheelchairs) and computers set up to accommodate needs for persons with neuromuscular disorders. You can also look to an OT for help with manipulating your environment to help you maximize mobility and to find ways to help you perform daily activities independently and more efficiently.
PTs teach you techniques and exercises to maintain strength in your muscles and maximize your range of motion. PTs achieve this through prevention, treatment and rehabilitation. After they perform various assessments, they develop and facilitate a treatment plan that will benefit the client. Using manual therapy methods, such as massages, manipulation and the use of heat, PTs are able to help their clients reduce pain and stiffness and promote relaxation. Like occupational therapists, they can also prescribe assistive devices to be used in treatment plans.
The physiatrist, a medical doctor specializing in physical and rehabilitative medicine, generally evaluates the extent of disability and functioning, and gauges the level of muscle function you still have (residual level). On the basis of these findings, treatment plans may be designed. Other functions may include:
- Recommending preventive and supportive treatment;
- Preventing complications;
- Determining which diagnostic tests are necessary;
- Helping maintain maximum function and quality of life;
Consulting with therapists concerning equipment.
A dietitian’s primary considerations are to keep your quality of life as high as possible by maintaining safe and adequate nutrition and hydration, in order to prevent life-threatening nutritional deficits from developing. They may assess or evaluate your functional abilities (ability to self-feed or to administer tube feedings), and your nutritional status and present dietary intake.
The dietitian may recommend the following:
- Appropriate changes in food texture and consistency;
- Appropriate methods of food preparation;
- Substitutions for had-to-manage foods;
- Meals of a manageable size and frequency;
Strategies for maximizing nutritional intake.
Respiratory Therapist and Respirologist
The respiratory therapist generally devises strategies to optimize remaining muscle function and reduce discomfort, and institutes a program of chest care if necessary. (In some locations, the physiotherapist may be the person who helps you with exercises to promote airway clearance and cough techniques.) Other tasks may include:
- Evaluating pulmonary function status;
- Maintaining pulmonary hygiene (airway clearance);
- Providing suggestions for managing decreasing breathing function;
- Offering information on body positioning, energy conservation, relaxation, and compensatory techniques to improve breath support for nutrition and for speech;
- Setting up a home ventilation program if appropriate;
- Making suggestions about a course of action to take when respiratory failure occurs.
The respirologist is a medical doctor who specializes in care for the respiratory system. Depending on how your neuromuscular disorder progresses, you may be referred to or seen by a respirologist in the event of a respiratory infection, or if you decide you are interested in mechanical ventilation.
Speech-Language Pathologist (SLP)
A speech-language pathologist provides advice on techniques and strategies to allow people with neuromuscular disorders to continue to communicate throughout life. Some functions of the speech-language pathologist may include:
- Evaluating the individual’s motivation and potential for learning new techniques;
- Evaluating functional abilities, such as oral motor function, cognitive-linguistic function, augmentative communication function, and swallowing function;
- Determining the most efficient communication function;
- Training people with neuromuscular disorders and family members in techniques of effective communication and energy conservation, and safe eating, drinking and swallowing techniques.
The social worker’s tasks include both practical assistance as well as emotional support to help people with neuromuscular disorders and their families cope with everyday life. The social worker offers:
- Emotional support and counseling to the person with the neuromuscular disorder and to family members;
- Referrals to the appropriate service agency if ongoing support is required;
- An understanding of the emotional impact of a neuromuscular disorder diagnosis and assistance with the psychological adjustments that come with this diagnosis;
- Information about available community resources and assistance in accessing these resources;
- Information on legal and financial issues and assistance in accessing these resources;
Help with setting short-term and long-range goals and making plans that will meet future care needs.
Pastoral Care Worker
A minister, priest, rabbi, chaplain or other pastoral care worker may perform the following functions:
- Listening to and empathizing with those who want to vent concerns;
- Assisting in making decisions;
- Giving spiritual support during emotional or physical crises;
- Acting as an advocate for those who have no voice;
- Reassuring people with neuromuscular disorders that their lives have meaning and facilitating spiritual reflection;
- Encouraging people with neuromuscular disorders to discover their personal strengths;
- Encouraging people with neuromuscular disorders to recapture positive experiences from the past by recall or reminiscence;
- Celebrating the individual’s humanity and worth;
- Listening to concerns about death and dying; and
Arranging for and conducting services when appropriate.
There may be other healthcare professionals on your healthcare team such as an assistive technology expert, wheelchair-seating expert, psychologist, or gastroenterologist.