An AFO Wish List From Patients
November 2018 Issue
We are writing as representatives of Get Back Up Today and TeamUP, the only national team of people living with foot drop or dystonia who are on a mission to help those with mobility issues improve their quality of life. Although foot drop can be caused by varied injuries, illnesses, or conditions, we all depend on orthotic care. Whether our goal is to be able to walk to the mailbox, run a marathon, attend a special event, or play with our kids in the backyard, our orthotists' decisions about our AFOs impact not only our present, but more importantly, our future. We have compiled a wish list we hope orthotists will consider when determining which AFO is best for each patient.
• Brace us for our future. As patients we often meet you at our lowest point, immediately after an injury or a diagnosis. When you treat us in that moment, please think about treating us not just in that moment, but also consider that how you brace us now may greatly affect our attitude and how we live the rest of our lives.
• Ask about our "why." Our physical condition should not define us. Along with our immediate medical assessments, please endeavor to discover our passions. Find out what drives us, what activities or roles have best defined us and factor these in to how you decide to brace us. Returning us to the activities we love means giving us our life back.
• Explore all AFO options. Keep an open mind. Many of us were initially fitted with a heavy and rigid AFO, but found lightweight dynamic response AFOs helped us better achieve our lifestyle goals. Allow us to try the different options.
• Reminders. Remind us that the brace you choose for us is determined based on our current physical, functional and lifestyle needs, and that it should never hurt. Should there be any signs of discomfort, skin discoloration, or a major change in physical condition (i.e., weight gain or loss), or lifestyle, we should contact you immediately for modifications or possibly even a different brace solution.
• Check back with us. Our conditions and goals, even technology, may have changed. Many patients' insurance coverage allows for new braces every two to three years, so this would be a great time to invite us back for a wellness check. The majority of us have never been contacted for follow-up after the first year.
• National survey. To our knowledge there exists no national database containing detailed diagnoses that lead to foot drop (i.e., multiple sclerosis, Charcot-Marie-Tooth disease, spinal cord injury, brain injury, stroke, etc.) with aggregate numbers of associated foot drop, nor any patient-based reporting of results of bracing. Our wish is that the O&P profession would create a survey that would accumulate this important data. It would benefit all parties involved: Patients may discover improved solutions for managing their mobility, insurers would see the functional benefits, and O&P providers could benefit from an increase in referrals.
In conclusion, we want to thank you. We realize there are many challenges facing O&P practitioners, and we appreciate the hours you spend on our care. When you focus on returning us to our jobs, to our families, and to our passions you are truly partners in our success.
Beth Deloria and Becky Piper are co-captains on TeamUP, an extension of Allard USA's Get Back Up Today campaign. The campaign was created to raise awareness about living with mobility challenges and to provide resources for those with mobility challenges. Beth can be reached at firstname.lastname@example.org, Becky at email@example.com.