Discussion Points:

• Important to consider pain and fatigue levels
• Similar to normal aging -- curve of decline similar but with a different baseline.
• Consider the mantra "Conserve it to preserve it" at times instead of "Use it or lose it" depending on the stage of the patient's life and what their goals are.  Energy conservation* may be needed (see attachment below).
• Very important to separate exercise from functional mobility (for example walking at school may not be practical, so an adolescent may choose to walk on a treadmill afterschool for exercise instead.)
• Encourage overall wellness and health promotion activities (healthy diet, sleep pattern and mental health important!)
• Need to encourage patients at a young age to participate in their own healthcare to promote independence and wellness.
• "Independence and self esteem go intimately together if you have a disability" -- K. Lankasky
• All people, disabled or not, need to make their own mistakes growing up
• Provide education to families and schools -- its okay for kids to fall, encourage participation as much as possible, educate regarding adaptations available.
• Focus on the positives, not the impairments, celebrate success by strength based reporting.
• Be aware that critical comments given to children (i.e. on their walking pattern) can have long term negative effects and impact their confidence.