By Suzanne Bratcher
Airports (or at least the ones I know) don’t feature on-staff neurologists or MRI machines. But yet, the Phoenix airport was where I discovered I had MS.
I had been limping for a couple of years, which my doctor had chalked up to overuse and sciatica. In March 2007, my experience at the airport gave me the push I needed to investigate what, exactly, was wrong with my right leg.
That spring my daughter and I were planning her wedding long distance. I was on my way home and sitting at the gate when they announced our terminal had been changed. I’m an experienced hiker with seven trips into the Grand Canyon, so that little walk didn’t sound like much. But when I stood up, I felt like I was midpoint on the Bright Angel Trail, climbing out of the Canyon.
As I walked through the airport, I found myself moving more and more slowly. No matter how hard I pushed myself, I couldn’t pick up the pace. As I became increasingly frustrated, I realized I wasn’t limping at all: my right leg was dragging. My left leg was doing all the work, and only the bag rolling on my right was keeping me from falling over. I made that flight—just before the gate agent closed the door.
As soon as I got home, I went to see my doctor a third time and insisted she find out what was going on with my leg. Two more doctors, a physical therapist and an MRI later, I had my diagnosis: secondary-progressive MS.
Three years later, I’m still walking. These days I use two hiking poles to keep my balance and compensate for the right leg that still drags. I don’t own a wheelchair (yet), and I don’t use them in stores.
Airports, however, are a different matter. These days air travel depends on physical stamina, excellent balance and the ability to walk quickly. A wheelchair actually allows me to focus less on my MS in an airport.
Then there are the perks: getting through security more easily, being seated first on the airplane and meeting the interesting, courageous folks who push those wheelchairs. For my money, it’s the only way to fly!
What does self-advocacy mean? In short, it means speaking up for yourself. It also means making informed decisions and taking responsibility for them. The Society’s Self-Advocacy Toolkit at nationalMSsociety.org/selfadvocacy can help you advocate for a better life: in the family, at work, in your community, at the doctor’s office and for health insurance.
The right tools for the job
The toolkit helps clarify what questions to ask and offers a framework for answering them. What should you do about a sudden increase in the co-pay for your medication? Should you disclose your MS to your employer? How can you improve communication with your spouse and children? For example, how can you get your kids talking to you after you tell them your diagnosis?
The Self-Advocacy Toolkit is ‘one-stop shopping’ for techniques to assess your situation, see reasonable solutions and come to a mutually agreeable result,” said Renee Vandlik, a Society senior manager for State and Local Government Relations. “It encourages individuals to identify a range of alternatives for meeting their needs.”
Working it out
The toolkit includes worksheets tailored to each significant area of life with MS: community, family, employment, medical care, Medicare, health insurance appeals, long-term care and Social Security Disability Insurance. Each worksheet provides a comprehensive, step-by-step approach to define the situation, consider a range of solutions and identify rights and responsibilities. The worksheets also offer sample situations and responses.
Each worksheet can be used to organize thoughts and actions around effective self-advocacy. You can keep track of tips and advice, do research on a particular issue and collect ideas for next steps.
Get your voice heard today and visit nationalmssociety.org/selfadvocacy.