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Eng Book- A Guide to Neuromuscular Disorders- Download Free PDF

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TABLE OF CONTENTS 
iii Acknowledgement 
INTRODUCTION ................................................................................................................. 1 
 A Message of Hope    
MUSCULAR DYSTROPHY CANADA ................................................................................ 2 
• Contacting Muscular Dystrophy Canada 
• Programs and Services 
o Information and Education 
o Equipment 
o Peer Support 
o Chapters 
o Referral 
o Social Action 
YOUR HEALTHCARE TEAM ............................................................................................. 6 
• The Role of the Neuromuscular Clinic 
• Your Primary Doctor 
• Neurologist 
• Nurse Clinician 
• Occupational Therapist & Physiotherapist 
• Dietitian 
• Respiratory Therapist 
• Speech-language pathologist 
• Social Worker 
• Pastoral Care Worker 
• Other Specialists 
• Professional Associations 
A Guide to 
Neuromuscular  
DisordersWHAT IS A NEUROMUSCULAR DISORDER?……………………………………………12 
• General Description 
• Muscular Dystrophy 
• Symptoms, Signs and Diagnosis 
• Genetics 
• Research 
TYPES OF NEUROMUSCULAR DISORDERS……………………………………………18 
• Diseases of Skeletal Muscle 
A) Muscular Dystrophies 
B) Structural Myopathies 
C) Acquired Inflammatory Myopathies 
D) Myotonic Disorders 
E) Channelopathies 
F) Metabolic Diseases of Muscle 
• Diseases of the Neuromuscular Junction 
• Diseases of the Peripheral Nerve 
• Diseases of the Anterior Horn Cell 
• Genetically Determined Ataxias 
• Complete List of Disorders Recognized by Muscular Dystrophy Canada 
LIVING WITH A PROGRESSIVE NEUROMUSCULAR DISORDER……………………32 
• The Diagnosis 
• Psychosocial Management 
• Physical Management 
• Nutrition 
• Medical Management 
• Surgical Management 
• Helping Children to Transition MOBILITY STRATEGIES ........................................................ 41 
• The Role of Exercise 
• Dealing with Problems 
• Assistive Devices 
• Transferring a person with a neuromuscular disorder 
• Transportation 
DEALING WITH SWALLOWING DIFFICULTIES .............................................................. 49 
• Mechanics of Swallowing 
• Making Eating Easier 
• Changes to Your Diet 
• Pills/Medications 
• Nutrition  - Dealing with Problems 
• Tube Feeding 
MOUTH CARE .................................................................................................................... 57 
• Mouth Care 
• Managing Saliva 
• Managing a Dry Mouth 
DEALING WITH SPEAKING DIFFICULTIES ..................................................................... 60 
• Dealing with Speaking Difficulties 
• Communication Devices 
• No-Tech Strategies 
• Low-Tech Strategies 
• High-Tech Strategies  
ADAPTING TO BREATHING DIFFICULTIES .................................................................... 67 
• Mechanics of Breathing 
• Symptoms of Weakened Breathing Muscles 
• Respiratory Diseases 
• Simple Strategies for Preventive Airway Management 
• Ventilators ASSISTIVE EQUIPMENT ..................................................................... 76 
• Before Purchasing Equipment 
• Bathroom Equipment 
• Beds and Mattresses 
• Body Supports 
• Communication Equipment 
• Lifts and Stair Glides 
• Tube-feeding Equipment 
• Walking – Canes and Walkers 
• Wheelchairs 
• Other Equipment 
GENETICS AND RESEARCH ................................................................. 84 
• Research in Genetics 
• Implications and Applications of Genetics in the Future 
• Future Research 
• MDC’s Role in Research 
ALTERNATIVE TREATMENT OPTIONS AND THERAPIES ............................................ 87 
CLOTHING ......................................................................................................................... 93 
• Clothing for Wheelchair Users 
FINANCIAL AND LEGAL CONSIDERATIONS ................................................................. 97  
• Living with a Neuromuscular Disorder can be Expensive 
• Insurance Issues 
• Pension Plans 
• Tax Issues 
• Living Wills and Power of Attorney 
• Last Will and Testament DEALING WITH DYING ........................................................... 107 
• Why it’s Important to Talk About it  
• Approaching the Concept of End-of-Life 
• Advance Planning 
• Final Note on End-of-Live Issues and Advance Care Planning 
REFERENCES .................................................................................................................... 114


____________________________________________________________________

Acknowledgements: 
 
Muscular Dystrophy Canada wishes to acknowledge and thank the ALS Society of
Canada for their permission to use some of the materials from their ALS Manual in
MDC's Self Help Manual.  The ALS staff and volunteers who worked on this project did
an excellent job and were extremely thorough.  MDC has partnered with the ALS Society
in many different ways over the years and we thank them for their ongoing support.
 
MDC would like to thank Megan Latimer for assisting with the process and for
gathering all the information together.  Also, thank you to the Services Team at MDC and
all the volunteers who provided insight and feedback into this project.
____________________________________________________________________

A MESSAGE OF HOPE 
Muscular Dystrophy Canada has developed this manual in order to provide information
and helpful suggestions for individuals who have just been diagnosed with a
neuromuscular disorder, as well as their family members and caregivers.  Living
with a neuromuscular disorder is not easy, and will represent many new challenges as
the disorder progresses; however, this manual will discuss the many resources and
support systems available for learning how to cope and manage living with a
neuromuscular disorder.  
This manual is the beginning of the coping and management process, and includes an
overview of neuromuscular disorders, coping tips and tools, and where to go for
help and support.  The manual also discusses some of the issues that individuals
diagnosed with a neuromuscular disorder should begin to consider, such as assistive
equipment and legal and financial issues for the future.  Readers are encouraged to use
this manual as a tool to keep notes, to organize personal information, and to
stimulate discussion between themselves, their family members, and their healthcare
providers.  
Muscular Dystrophy Canada will update the manual as regularly as possible as new facts
and treatments become available, as readers will understandably want to have access to
the most recent information about muscular dystrophy.  However, sometimes advances
in areas such as research and clinical trials change faster than our ability to update the
manual.  We encourage individuals and family members to regularly consult their
healthcare team as well as the Muscular Dystrophy Canada website for the latest
information.  
It is our hope that this manual will be a source of strength and
encouragement, as readers are provided with the tools they need to
begin living with a neuromuscular disorder.  Although the road ahead
will present many challenges and difficulties, by better understanding
the facts about neuromuscular disorders and knowing what resources
are available it is our hope that readers will be able to live happier, more
fulfilling lives.
___________________________________________________________________

MUSCULAR DYSTROPHY CANADA 
Muscular Dystrophy Canada was founded in 1954 as a national non-profit charitable
organization, and is committed to improving the quality of life for the tens of thousands
of Canadians with neuromuscular disorders.  Muscular Dystrophy Canada’s National
Office is located in Toronto, and every major region in Canada has its own office to
serve its local residents.  Additionally, there are Chapter groups in many cities that
provide valuable peer support for individuals and family members.  
Muscular Dystrophy Canada’s mission is to support the independence and full
participation of Canadians with neuromuscular disorders.  Muscular
Dystrophy Canada assists individuals to participate in the decisions that affect them
and collaborate with others for social change, and also funds research to improve
the quality of life of people with neuromuscular disorders with the ultimate
goal of one day finding a cure.  We encourage readers to contact us to find out
more about our programs and services, and how we can best serve you and your family.

______________________________________________________________________

Programs and Services 
Muscular Dystrophy Canada provides a number of services to people registered with
our Organization, including: Information and Education, Equipment, Peer and
Chapter Support, Referral, and Social Action.  You may obtain a Muscular
Dystrophy Canada registration form from your regional office or the Muscular
Dystrophy Canada web site (www.muscle.ca). To register, fill out the
form and return it to any Muscular Dystrophy Canada office. The completed
form must include a confirmation of the diagnosis by a physician. There is no cost to
register, and the information you provide is always kept confidential. You become
eligible for Muscular Dystrophy Canada services as soon as your registration form is
approved.  In addition, you must:
• Be a Canadian citizen, landed immigrant, or refugee resident in Canada
• Have a confirmed diagnosis of a neuromuscular disorder under the
Muscular Dystrophy Canada umbrella
Muscular Dystrophy Canada encourages anyone with a confirmed diagnosis of a
neuromuscular disorder to register. Each newly registered individual will help to
strengthen Muscular Dystrophy Canada's voice - a voice that works to represent the
needs of all people living with neuromuscular disorders at community,
regional, and national levels.
Information and Education
Muscular Dystrophy Canada provides information to people registered with us,
their families, their community, professionals, and the general public about
neuromuscular disorders and related issues.
Information is available in the form of disorder-specific information sheets,
research updates, brochures, videos, and books. An extensive and dynamic website
(www.muscle.ca) provides access to electronic copies of all our publications, plus
links to news and in depth coverage of our research funding. Muscular Dystrophy
Canada publishes a national newsmagazine, Connections, available in both French and
English. The magazine features information on a variety of neuromuscular disorders as
well as related topics such as research, genetics, parenting, and quality of life.
Regional offices also help people in their area keep up to date through regional
newsletters.  Services staff in our regional offices will respond to any request for
information that you may have, or they will help you find the information that you need.
Equipment 
The Muscular Dystrophy Canada equipment loan program provides basic medical
equipment, on loan, from a stock of recycled devices such as scooters, manual and
electric wheelchairs, and hospital beds.
Some funding assistance may be available for the purchase of new equipment. If a
request is made for a device that the Organization does not cover, or only
partially covers, Muscular Dystrophy Canada staff may be able to suggest other
sources of funding. For more information about equipment funding, call the regional
office nearest you.

Peer Support 
Support comes in many forms and is dependent on individual needs. Some people
already have strong support systems in place through family, community, and church and
their needs are minimal. Other people are facing stresses such as financial difficulties
or family problems, in addition to the dayto-day reality of life with a neuromuscular
disorder. Life can become difficult at particular times, such as when the diagnosis
is made or when symptoms seem to get suddenly worse.
The Muscular Dystrophy Canada Peer Support Program offers those facing
challenges the chance to talk to someone who has gone through a similar experience.
People registered with MDC, family members, and close friends -- trained by
Muscular Dystrophy Canada staff – offer information about resources, tips on coping,
and an "understanding ear" to people who are looking for support.  For people
registered with Muscular Dystrophy Canada who might prefer support in a group setting,
MDC staff can refer you to a local network or support group in your area, or even help
you to create a new one.


Chapters 
Muscular Dystrophy Canada Chapters form a nationwide network of people registered
with MDC, their families, and volunteers. They actively help Muscular Dystrophy
Canada to achieve our common objectives especially at a local level. Chapter activities
can include support, social events, and fund raising.
Chapter members are often people registered with the Organization and their families.
However, anyone who is interested in furthering the aims and objectives of
Muscular Dystrophy Canada is welcome to join. In communities across Canada,
dedicated Chapter members provide valuable time, energy, and experience that
ultimately benefit people with neuromuscular disorders and the
communities they live in. For the location of the Chapter nearest you, call your regional
or community office.




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