MuscleFacts

1. MuscleFacts An educational resource focused on people with physical disabilities to increase awareness and inclusivity.

2. Presentation Overview Muscular Dystrophy Canada and our services The MuscleFacts Program Neuromuscular Disorders Roles of Health Care Professionals

3. Muscular Dystrophy Canada Vision To find a cure for neuromuscular disorders in our lifetime. Mission To enhance the lives of those affected by neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for a cure through well funded research.

4. Muscular Dystrophy Canada Established in 1954. Over 150 different types of neuromuscular disorders are under the Muscular Dystrophy Canada umbrella. Fundraising efforts. 5 pillars of service.

5. 5 Pillars of Service Advocacy Education Equipment Information Support

6. The MuscleFacts Program Educator presentations Classroom presentations School Resource guide Parent guide

7. Introduction to Neuromuscular Disorders

8. What is a neuromuscular disorder (NMD)? The term describes a wide range of conditions. All have in common a weakness caused by an abnormality in either the nerves or muscles. Many are hereditary (genetic). Most are progressive. Presently no cure; medication and other treatments help slow the progressive deterioration in muscle strength.

9. How do you get a neuromuscular disorder? Neuromuscular disorders are caused by genetic mutations (changed or altered gene, gene may be copied multiple times). Non-contagious, non-infectious. May be inherited, but some occur in families with no history. Some people are carriers

10. How are neuromuscular disorders diagnosed? Neurologists conduct tests to determine the specific type of neuromuscular disorder. Some children will have diagnosis at birth or prior to beginning school. Others will be having tests while school aged. Others will only be beginning to show signs and symptoms in later life..

11. Common Implications

12. People with disabilities get sick more often than others. TRUE or FALSE FALSE

13. Most people who use wheelchairs can feel their legs. TRUE or FALSE TRUE

14. A building with a wheelchair symbol is totally accessible for wheelchair users. TRUE or FALSE FALSE

15. If a child has a disability, it is probably an invisible disability. TRUE or FALSE TRUE

16. Someone who is affected by a neuromuscular disorder always has a physical and a cognitive disability. TRUE or FALSE FALSE

17. People who are affected by neuromuscular disorders experience a lot of pain. TRUE or FALSE FALSE

18. Role of Health Care Professionals Health care professionals work worth individuals with a neuromuscular disorder in a multidisciplinary way. The nature of treatment varies for each individual due to the diversity of neuromuscular disorders.

19. Neurologists Confirms a diagnosis of neuromuscular disorder. Works with GP to: Outline types of treatment options available. Encourage the setting of short-term goals. Help preserve a positive self image and maintain morale. Help identify specific needs and concerns and refer to other specialists.

20. Family Doctors/ General Practitioners Explain the diagnosis, possible progression and potential treatment options for neuromuscular disorders. Make referrals and consults with other health care professionals to manage clients care. Discuss courses of action a client wishes to take if respiration failure occurs. General health needs.

21. Physiatrists Evaluate the extent of the disability and functioning, gauge the residual level of muscle function a client has. Design a treatment plan based on these findings that are preventative, supportive, and help maintain maximum function and quality of life. Determine which diagnostic tests are necessary. Consult with therapists concerning equipment.

22. Physiotherapists Teach clients techniques and exercises to maintain strength in muscles and to maximize range of motion. Involved from prevention to treatment to rehabilitation. Perform assessments to develop and facilitate treatment plans. Uses various manual therapy methods, such as massages, manipulation, and use of heat, to alleviate pain and stiffness. Can prescribe assistive devices.

23. Occupational Therapists Help maintain health and increase independent function through use of self-care, work and play activities. Work with other health care professionals to set up programs tailored to each client. Assess clients for assistive devices to improve functioning on a day-to-day basis. Help manipulate environment to maximize mobility and perform daily activities independently and efficiently.

24. Recreation Therapists Assist clients with making and obtaining goals related to Leisure Education (what is available to them), Leisure Participation (how they can participate), and Leisure Integration (education of community – people and facilities – about a person’s accessible needs ands and successful interactions).

25. Respiratory Therapist Optimize remaining muscle function and reduce discomfort. Institute chest care program (if necessary). Evaluate pulmonary function status. Maintain pulmonary hygiene. Provide techniques on body positioning, energy conservation, relaxation, and compensatory techniques to improve breath support for nutrition and speech. Set up home ventilation program.

26. Nurse Clinicians Analyze client’s data, draw up and implement care plan. Has a role in: 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

27. Social Workers/Case Managers Provide practical assistance and emotional support. Counseling to clients and their families. Make referrals to appropriate service agencies as needed for ongoing support. Assist with psychological adjustments that come with a neuromuscular diagnosis. Provide information about community resources, legal and financial issues. Help set short & long term goals and plan for future needs.

28. Dieticians Help clients maintain a high quality of life by maintaining safe and adequate nutrition and hydration. Help prevent life-threatening nutritional deficits. Assess client’s functional abilities. Suggest: Appropriate changes in food texture and consistency, appropriate methods of food preparation, substitutions for hard-to-manage foods, meals of manageable size and frequency, strategies for maximizing nutritional intake.

29. Speech and Language Therapists Provide advice on techniques and strategies to continue to communicate throughout life. Evaluate individuals motivation and potential for learning new techniques. Evaluate functional abilities, such as oral motor, cognitive-linguistic, augmentative communication and swallowing. Determine the most efficient communication method. Energy conservation, safe eating, drinking and swallowing techniques.

30. Tips from People with Neuromsucular Disorders Know the difference between MS and MD. Pre-read about the specific neuromuscular disorder before contacting a patient with that diagnosis.

31. Questions?Thank you! Contact: MuscleFactsWest@muscle.ca Everyone has different abilities and that is what makes our communities and schools special!