Ambulation Consumer Advisory Panel

m The Ambulation Consumer Advisory Panel (CAP) gathered for a meeting on Thursday October 7, 2010. Our CAP is made up of a diverse group (injury level, gender, age) of six people with spinal cord injuries who are able to walk to some degree. The group received an overview of all studies, reviewed the ambulation survey instrument, and then had an emotionally charged discussion surrounding the negative consequences, as well as both the positive and negative psychological aspects of ambulating after SCI.

First, the group reviewed the "Ambulation and Secondary Complications: Participants with Chronic Spinal Cord Injury" survey and had the following recommendations:

-They suggested that the survey should be more specific as to whether you are able to walk distances independently, without any support of another person and without breaks

-Clarifications for walking support and assistance for walking in the home and in the community

-Add questions for complications experienced as a result of walking

The group also identified all potential negative negative consequences of walking, some of which included: pain in joints, hands, hips, legs, back, and shoulders, dealing with weather conditions (rain, ice, snow), environmental obstacles – no sidewalks, curb cuts, aisles in stores too narrow, etc., falls, stigma of using braces, walker or cane, muscle spasms, lack of concentration in everyday life, sleeping issues, over use of pain medication

Lastly, the CAP discussed the positive or negative psychological aspects of walking after an SCI which included such items as:

• Walking helps maintain muscle tone and bone density
• Helps with constipation and empties bladder
• Walking even 20 feet provides hope of what is possible
• Improves self esteem and confidence
• People treat you like you are stupid when they see the assistive devices
• People ignore you if you use assistive devices
• Standing helps blood flow
• People maybe too helpful when they see the assistive devices
• Walking can tire you out so much that it affects you functioning for the rest of the day
• May have to take too much pain medication as result of walking
• Get frustrated/depressed if you’re walking progress plateaus or regresses
• Experience guilt or depression because walking has not improved
• Walking makes you “feel” more complete
• Standing allows you to maintain better eye contact during conversations
• Standing allows you to more easily initiate conversations