Growing up, I benefitted from a wide variety of early intervention therapies and adaptive sport programs that helped me work on my walking and my overall independence. I've also had surgeries to correct muscular skeletal issues and used Botox injections to help regulate my spasticity. However, because CP causes severe muscle spasticity, these tight muscles force me to expend significant amounts of energy just to maintain my daily walking. These tight muscles exacerbate my foot dragging and force me to lean harder on my crutches, thus increasing the strain I put onmy shoulders and overall posture. Over the last four years, I've started using my manual wheelchair more to perform daily tasks around the house and community.
In 2013, one of my doctors introduced me to a revolutionary device called the WalkAide. The WalkAide system utilizes patented tilt sensor technology and functional electrical stimulation (FES) to analyze the movement of the leg and stimulate the appropriate nerves, prompting the foot to lift with every step. The gentle electrical impulses produced by WalkAide activate the muscles to raise the foot at the appropriate time during the step cycle, creating a more natural and efficient walking pattern. Finally, I had found a device that would help me work on my foot dragging and improve my gait pattern! At that time I was about to move to Santiago, Chile for a two year volunteer program so I put the idea of getting a pair of WalkAides on the back burner.
In August 2017, I reinitiated the process of getting a pair of WalkAides to replace my currently delapidated leg braces. Each WalkAide device costs $4,500. Because I need one for each leg, we're talking about $9,000 out of pocket. The problem is that the WalkAide is classified as "experimental and investigational" for CP. It is also deemed "medically unnecessary" by many insurance companies because the device is outside the "standard of care." This language allows the health insurance companies to deny coverage for the device. While I was aware of this reality from day one, I hoped my case would be different. With the wonderful team at Hanger Clinic in Walnut Creek, I signed up and paid $500 for a three week home trial with the devices and experienced remarkable results. My walking was smoother, faster and I was actually picking up my feet and standing up straighter. The swelling I experience in both feet disappeared due increased blood flow and overall circulation. Overall, the benefits were super positive!!!
Then it came time to fight it out with Blue Shield of California, my health insurance company. My initial claim for coverage that was supported with letters of medical necessity from my doctors was denied on October 3rd, 2017. Then I returned to my longtime rehabilitative medicine doctor for a new evaluation to serve as evidence for an APPEAL of my denial. I was optimistic we would win the appeal but we did not and now I feel I've exhausted all my resources except paying out of pocket. My appeal was just denied on December 14th, 2017.
I humbly request your support in helping me purchase the WalkAides so I continue to live a healthy, functional and adventure filled life. I promise to keep you updated on my progress. Feel free to checkout my videos of life with the WalkAide on my instagram feed @tonitonetones.
Thank you so much for your love and support!
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