Duchenne Muscular Dystrophy Manual:
(Future)Table of Contents

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I. READ THIS FIRST

II. FINDING OUT

A. Suspicions
B. Medical Investigations

1. Clinical Symptoms
2. Family History
3. Blood
4. Needle Biopsy and Dystrophin Test
5. Other Tests

C. Diagnosis

III. AFTER THE DIAGNOSIS

A. The Bad News

1. Some Genetics
2. Clinical Symptoms
3. The Habits Of Successful People

B. The Good News
C. Accepting

1. Emotions

a. Fear
b. Denial
c. Grief

d. Guilt
e. Depression
f. Anger
g. Envy

2. Accepting Your Child

a. Overprotectiveness
b. Balancing your attitude

3. Accepting Your Role

a. Some politically correct words
b. A role model

IV. GETTING HELP

A. THE COACHING TEAM CONCEPT
B. THE MUSCULAR DYSTROPHY ASSOCIATION

1. DEALING WITH MDA
2. PATIENT SERVICES COORDINATOR
3. CLINIC
4. SUPPORT GROUPS
5. CAMP
6. FUNDRAISING

C. GOVERNMENT BUREAUCRATS
D. FEDERAL GOVERNMENT

1. HEAD START
2. SUPPLEMENTARY SECURITY INCOME (SSI)
3. MEDICAID
4. CSHCN PROGRAMS
5. OTHER SOCIAL SECURITY PROGRAMS
6. ADVOCACY PROGRAMS
7. PARENT INFORMATION PROGRAMS
8. INFORMATION CENTERS
9. INTERNAL REVENUE SERVICE

E. STATE GOVERNMENT
F. LOCAL

1. SCHOOL
2. INSURANCE COMPANIES
3. CHARITIES
4. SUPPORT NETWORKS: IN YOUR TOWN AND IN CYBERSPACE

G. YOUR EXTENDED FAMILY

1. YOUR SPOUSE
2. YOUR OTHER CHILDREN
3. YOUR PARENTS
4. YOUR CHURCH
5. YOUR FRIENDS

H. DISCIPLINES

1. NEUROLOGIST
2. PEDIATRICIAN
3. Pediatric Physiatrist
4. PHYSICAL THERAPIST
5. OCCUPATIONAL THERAPIST
6. DENTIST
7. PHARMACIST
8. SOCIAL WORKER
9. PSYCHOLOGICAL COUNSELOR
10. FINANCIAL ADVISOR

V. DAMAGE CONTROL

A. GENETIC COUNSELING
B. FAMILY PLANNING
C. HOW TO TELL THE SIBLINGS AND FRIENDS
D. HOW TO TELL THE CHILD
E. HOW TO TELL THE PUBLIC

VI. ANTICIPATING

A. Looking out for number one

1. Respite

B. Clinic visits

1. Keep records
2. Visit strategies
3. Visit: medical procedure

C. Lifting and carrying
D.Financial planning

1. Keep records
2. Plan ahead

E.In case of accidents
F. Immunizations
G. Housing

1. Assess your house

a. Safety

(1) Fire safety
(2) Falling

b. Accessibility

(1) Doorways
(2) Thresholds and doorsteps
(3) Banisters
(4) Handrails
(5) Ramps
(6) Bathrooms
(7) Tables

2. Plan for future accessibility: a new house?

H. Transportation
I. Computers and controllers

VII. THE WALKING YEARS

A. What to expect

1. From your child

a. Psychologically

2. From the world

B. Treatments

1. Exercises

a. active exercises
b. breathing exercises
c. passive exercise: stretching
d. Standing frame for exercising
e. Hydrotherapy

2. Home management

a. Sitting
b. Sleeping

3. Interventions

a. Splints
b. Braces
c. Prednisone
d. Muscle tissue transplants
e. Myoblast transfers
f. Gene therapy

C. Equipment

1. Bed
2. Bath
3. Toilet
4. Strollers
5. Canes
6. Walkers
7. Cars

a. Car Accessories

8. Handy dandy thingamabobs

a. Alarm system
b. Hand helpers

(1) Eating
(2) Writing
(3) Keys

D. Getting around

1. Stairs
2. Bikes

E. Nutrition
F. Clothing

1. Shoes

G. School

1. Intelligence
2. Social Skills
3. Special ed or mainstreaming?
4. IEP: Individual Educational Plan
5. Accessibility
6. Talking with the teacher
7. Physical education

H. Recreation

1. Sports

a. Swimming
b. Fishing
c. Bowling

2. Hobbies

a. Games
b. Music
c. Reading
d. Art
e. Gabbing
f. Aquariums
g. Collecting
h. Nature
i. Volunteer Work

3. Clubs
4. MDA Camp, and other vacation places

I. Your family

1. You and your DMDer

a. Behavior
b. Conflict
c. Discipline
d. Flexibility
e. Openness

2. Your spouse
3. Your other children

J. Getting ready for the next phase

1. When to get a folding wheelchair
2. How to introduce the wheelchair
3. Wheelchair alternatives

VIII. THE MANUAL WHEELCHAIR

A. Instruction
B. Parts

1. Brakes
2. Wheels
3. Hand
4. Castors
5. Frame
6. Cushions
7. Foot rests

C. Storage
D. How to transfer a folding wheelchair

1. In and out of the car
2. Up and down stairs

IX. THE ELECTRIC WHEELCHAIR

A. What to expect

1. Psychological repercussions
2. Financial repercussions
3. Social repercussions
4. Contractures
5. Lung function
6. Pressure sores

B. The chair

1. Picking A Wheelchair

a. Brakes
b. Wheels
c. Head Supports
d. Wheelchair backs
e. Wheelchair seating
f. Leg Rests
g. Foot rests
h. Arm rests
i. Seat Belts

2. Backup wheelchair
3. Wheelchair Accessories

a. Pouches and bags
b. Trays
c. Reachers
d. Lights
e. Horns
f. Aprons
g. Tire wiping mats

4. Instruction
5. Maintenance
6. Safety
7. Etiquette

C. Other Equipment

1. Bed
2. Standing Frame
3. Bathroom
4. Communication system
5. Lifting and transport aids
6. Van
7. Arm movement assistance
8. Handy Dandy Thingamabobs

a. Controls
b. Telephones
c. Reading
d. Heaters

D. Getting Around

1. Inside Your Own House

a. Reach
b. Doors

2. Outside
3. In Other Buildings

a. Handicap parking

E. Nutrition
F. Clothing
G. School
H. Recreation

1. Sports

a. Fishing
b. Billiards

2. Hobbies

a. Photography
b. Sewing
c. Gardening

3. Vacation

I. Lifting and carrying an older child
J. Social Skills: Adolescence
K. Sex
L. Respiratory Therapy Program

1. Exercises
2. Disease prevention
3. Postural Drainage
4. Equipment

X. SCOLIOSIS

A. What it is and what it does

1. Inserts, Pads, and Body Jackets
2. Scoliosis Operations

a. Hospitals

(1) Preparation
(2) Organization and procedures
(3) Coping with your child
(4) Going back home

XI. ASSISTED VENTILATION

A. What to expect
B. When to choose
C. The choice for assisted ventilation
D. The choice against assisted ventilation
E. Living with a ventilator

1. Ventilators
2. Suctioning
3. Etiquette

XII. TRANSITION TO ADULTHOOD

A. Independence
B. Overdependence

XIII. CONCERNS ABOUT DEATH AND DYING

A. What to expect

1. Respiratory Problems
2. Cardiac Muscle Involvement

B. Hospice care
C. After death

1. Autopsy
2. Organ donation
3. Burial
4. Grief

XIV. AND NOW: YOUR NEXT PHASE

XV. LITERATURE, NOTES, INDEX

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