By Reid Coleman
I am excited to be participating in a new study that has major implications for the hemophilia community if it succeeds, which I hope it will. The change it has made in my life is absolutely miraculous.
In mid-January I received a device called WalkAide, which monitors my gait and adjusts my impaired right leg’s movement accordingly. Strapped just under my right knee, the device uses electrical impulses to improve the neural pathways between my foot and my brain, and it coordinates with my joint to handle stairs, bikes and other situations where adjustments must occur in my leg. WalkAide allows me to walk without a brace and work out without encumbrance, both of which should cut down on my bleeds and improve my overall health.
I am part of a study group that includes control and test subjects, with me being among the latter. Now that I have been evaluated for the program (which included an electrical stimulation test of my leg) and fitted for the device, I will be monitored to see how my body is improving from using WalkAide for six to eight times over the next year at a clinic in Greensboro, N.C., the closest participating center near where I live. So far I am quite impressed with the device, although I am still adjusting to it, and I have learned I cannot wear it all the time, as it constantly sends electrical volts that can be a little unpleasant and leave my leg somewhat sore.
This study is important because as people living with hemophilia, we tend to avoid using our muscles, which causes them to waste away and adds pressure to our joints to compensate. The heavier the weight we place on our joints, the more likely we are going to fall and/or bleed and increase our chance of joint disease. That leads to more reliance on medications, which in turn costs the government extra in Medicare and Medicaid payments to cover the cost of treatments.
To stop this cycle of dependence, WalkAide improves the use of your feet and toes and lets you become more active. With WalkAide, I am able to exercise even more in my five-days-a-week routine, which includes swimming and lifting weights, including 230 pounds on the leg press. I have made exercise the focal point of my life, and I believe other people living with hemophilia should as well for their health and safety.
This device is one of the best developments I have experienced in my lifelong efforts to live with hemophilia. My hemophilia is genetic on my mother’s side. At age 12, an undiagnosed massive cerebral hemorrhage sparked by my hemophilia caused me to bleed substantially, and I lapsed into a coma temporarily. Two weeks later after having surgery, I was left with mobility problems, and within two years I was put in a brace to keep me from moving my leg at certain angles.
I ended up developing a limp as my right leg grew a half-inch shorter than my left due to atrophy, and I cannot lift it on my own. With WalkAide, I now am able to raise that leg. My limp and my brain function to my leg have improved as well.
I hope that this study will provide positive results that we can and will roll out to other people living with hemophilia who share my situation.