Mobility Technology

When I was first diagnosed with Charcot-Marie-Tooth, a hereditary peripheral neuropathy disease, I was told the worst-case scenario would be the need to wear ankle braces. At that point I had lost the ability to run and, much more to my dismay, wear high heels. Oh well, I thought, life goes on I can still perform the duties of my sales job and walk around enough to have an enjoyable social life.
That was nearly 10 years ago and, unfortunately, a dream compared to how I ended up. After 15 years working as an outside sales representative, I was forced out when I lost my balance (it turns out that falling into customers while trying to present material isn’t a very good sales strategy) and going out on the town became nearly impossible in a city that has yet to fully implement the requirements of the Americans with Disabilities Act. So, I ended up in a situation I never thought imaginable.
Determined to do something, I found a volunteer position that seemed interesting, challenging, and completely out of my realm of experience. I became a Court Appointed Special Advocate (CASA) for a child in the foster care system. I was able to get around ok with a cane and sturdy knee-ankle-foot orthotics as long as the places I needed to go were handicap accessible. Since my CASA child lived in a group home and the only other places I needed to go were the court house and his school, both government buildings and required by law to be accessible, I was able to perform the duties of a CASA.
Three years into my position, I aided in placing my CASA child into a stable, nurturing home with a family member, so he is going to be emancipated from the dependency court later this summer. My case was so successful that it was featured in the CASA newsletter. My supervisor has pleaded for me to take on another case but I had to decline. My stability and function has deteriorated and I have begun to fall on a regular basis. I no longer feel comfortable going anywhere and have become practically housebound.
In a last ditch effort to find a solution other than a wheelchair, (sitting long periods of time is uncomfortable and weakens my legs, it’s not good for anyone to sit long periods of time!) I found leg braces that are on the cutting edge of technology and may revolutionize the definition on disability.
Leg braces haven’t advanced much since the days of Polio. They are generally rigid and force one to walk, well, like Frankenstein. The braces I currently wear help with balance but one wrong step, at the wrong time, on the wrong surface, and I am on the floor with another injury. This new brace, called the C-brace made by Ottobock, uses sensory chips and a mini-processor to operate the knee joint, which allows the user to walk normally and navigate a variety of terrain such as grass, carpet, ramps and stairs. It is replacing the sensory nerves in the feet that I and many other people with nerve damage and disease no longer have. But, its most important aspect is a stumble control feature that will detect is one is off balance and lock the knee joint so the leg won’t collapse.
I was thrilled to know that this brace was on the market and scheduled an evaluation where I was able to try out a prototype. I immediately felt the difference. I was sturdy, walked correctly and faster than I had in 10 years. I felt normal again.
Then reality hit. Because this is new technology, insurance won’t cover the cost. Generally, the technology needs to become obsolete before it will get coverage. So, here is where I need the help. The braces retail for $140,000. I know, my jaw dropped too. But the bigger picture here is this: its not just my desire to continue my work with CASA it is also the need to remain as independent as possible and engage in life with friends and family. It is hard to maintain relationships when I can’t leave the house to visit a sick friend or meet them at the hottest new restaurant. Furthermore, it will increase the incentive for companies to continue to develop technology that may render some disabilities obsolete. Here is the link to the web page. I encourage you to watch the videos of the patients who have been fitted to see the change in their ability and quality of life.

Thank you all who donate to my cause.
Dee Ann Alongi
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Dee Ann Alongi 
Los Angeles, CA
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