Your Healthcare Team

Neuromuscular Clinics

Neuromuscular clinics across Canada care for patients through an interdisciplinary team approach. These clinics typically involve health care providers from various fields of medicine with knowledge in caring for patients with neuromuscular and/or neurological disorders. Clinic staff monitor and assess your health, implement therapies and treatment plans, prescribe medications and suggest equipment to help you manage your condition. Clinics are typically focussed on providing care for either the paediatric (under 18) or adult populations.

Tips on preparing for your visit to a paediatric neuromuscular clinic

Health Care Providers

It is important to identify and work with a supportive, patient-centred health care team who understands neuromuscular disorders, your situation, and the options available to you. Below you will find information about roles of different health care professionals and allied health providers. These professionals will help you to manage and overcome the challenges brought on by your neuromuscular disorder.

I want to learn about:

Family Doctor / General Practitioner / Primary Care Physician
Neurologist
Nurse Clinician/Registered Nurse (RN)
Occupational Therapist (OT)
Physiotherapist (PT)
Physiatrist
Registered Dietitian
Registered Holistic Nutritionist
Respirologist and Respiratory Therapist
Speech-Language Pathologist (SLP)
Social Worker
Pastoral Care Worker

 

 

Family Doctor / General Practitioner / Primary Care Physician

Your doctor’s role may include:

  • Explaining the disorder diagnosis and its possible progression and treatment options
  • Making necessary referrals to, and consulting with, other health care providers to best manage your care
  • Discussing the course of action you wish to take if respiratory failure occurs
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Neurologist

A neurologist is a specialist in nervous system disorders who can confirm a diagnosis of muscular dystrophy or other neuromuscular disorders. Your doctor may refer you to a neurologist, and between them they may:

  • Outline available treatment options
  • Work with you to identify specific needs and concerns, and refer you to therapists who may be able to determine solutions
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Nurse Clinician/Registered Nurse

A nurse clinician or registered nurse (RN) may create and implement a care plan. A nurse’s role may include:

  • 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 patients and their families
  • Liaising with community organizers
  • Making referrals to community services
  • Providing nursing involvement if problems arise
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Occupational Therapist

An occupational therapist (OT) helps you maintain health and increase independent function by using self-care, work, and play activities. An OT’s role may include:

  • Helping patients overcome their physical challenges and adapt to daily living needs
  • Working with doctors, nurses, and other health care providers to implement different programs specific for each patient
  • Offering suggestions that could assist with daily functioning, such as mobility aids (i.e. wheelchairs) and computers
  • Helping to change your environment to maximize mobility and independently and efficiently perform daily activities
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Physiotherapist

A physiotherapist (PT) teaches you techniques and exercises to maintain muscle strength and maximize range of motion. A PT achieves this through prevention, treatment, and rehabilitation, which may include:

  • Performing various assessments to develop a treatment plan that benefits the patient
  • Using manual therapy methods, such as massages, manipulations, and heat, which reduce pain and stiffness and promote relaxation
  • Recommending assistive devices to use in treatment plans if appropriate
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Physiatrist

A physiatrist is a medical doctor who specializes in physical and rehabilitative medicine. A physiatrist’s role may include:

  • Evaluating the extent of functioning and remaining muscle function level (residual level)
  • Recommending preventive and supportive treatment
  • Determining diagnostic tests and assessments for monitoring diagnosis progression
  • Helping maintain maximum function and quality of life
  • Consulting with therapists concerning equipment
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Registered Dietitian

A registered dietitian assesses your nutritional status, dietary intake, feeding abilities and provides recommendations, which may include:

  • Modifying the texture and consistency of your food
  • Alternative food preparation methods
  • Substitutions for hard to manage foods
  • Recipes, meal plans, and other strategies to maximize your nutritional intake
What is the difference between a “registered dietitian” and a “nutritionist”?

Only dietitians registered with Provincial Regulatory Bodies can use the titles “registered dietitian”, “professional dietitian”, and “dietitian”. These titles are protected by law, and dietitians are accountable to provincial regulatory bodies for their conduct.

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Registered Holistic Nutritionist

A registered holistic nutritionist has knowledge in Natural Nutrition and corresponding therapies with a primary goal of educating you about the health effects of sound nutrition. A registered holistic nutritionist’s role may include creating personalized nutrition and lifestyle programs that optimize health.

What is the difference between a “registered holistic nutritionist” and a “nutritionist”?

Only graduates from the Canadian School of Natural Nutrition or The Institute of Holistic Nutrition program can use the title “registered holistic nutritionist”.

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Respirologist and Respiratory Therapist

A respirologist is a medical doctor who specializes in care for the respiratory system. You may be referred to a respirologist in the event of a respiratory infection or if you require assisted (mechanical) ventilation. A respirologist typically works in partnership with a respiratory therapist.

A respiratory therapist (RT) assesses, treats, and maintains your heart and lung function. A respiratory therapist’s role may include:

  • Evaluating pulmonary (lung) function status
  • Recommending therapies to promote effective coughing and pulmonary hygiene (airway clearance)
  • Providing suggestions for coping with decreased breathing function
  • Offering information on body positioning, energy conservation, relaxation and compensatory techniques to improve breath support
  • Setting up a home ventilation program
  • Making suggestions about a course of action to take if respiratory failure occurs
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Speech-Language Pathologist

You may be referred to a speech-language pathologist (SLP), whose role includes:

  • Evaluating functional abilities, such as oral motor function, cognitive-linguistic function, augmentative communication function and swallowing function
  • Determining efficient communication techniques and strategies
  • Training patients and family members in techniques of effective communication, energy conservation, and safe eating, drinking, and swallowing
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Social Worker

A social worker’s role includes both practical assistance and emotional support. A social worker offers:

  • Emotional support and counselling
  • 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 it
  • Information about accessing community resources
  • Information on legal and financial issues
  • Help with setting short-term and long-range goals, and making plans that will meet future care needs
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Pastoral Care Worker

A minister, priest, rabbi, chaplain or other pastoral care worker may provide support and guidance during an emotional or physical crisis, including:

  • Listening, and empathizing
  • Coaching and assisting with difficult decision-making
  • Facilitating spiritual reflection
  • Encouraging people to discover and nurture their personal strengths
  • Celebrating the individual’s humanity and worth
  • Assisting and comforting families dealing with death
  • Arranging for and conducting services
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