Beeeep! The Bioness control unit went dead, completely dead. It was Tuesday. We were to leave for NYC on Sat. This was not good. Without my Bioness devices, I can't walk with shoes, unless, unless, I go back to my AFOs, which are ugly leg braces. After leaving those old ugly leg braces in my car for well over a year as backups, I had decided to remove them from my car. The AFOs have to be worn with ugly, no good, big, clunky shoes. Take my word for it. One beauty of Bioness is I can wear somewhat regular, non-clunky shoes. Take my word for it. The explanation needs pictures and would be boring. Would I have to go to NYC with the big clunky ugly and now old shoes? Oh no. Please no. The Bioness devices have helped my walking so much. I look a lot less like a duck now... I'm not swinging my legs out as much. I am walking heel to toe again. But when I think about it, the biggest plus is the shoes. And so you know, the controller just needed a new battery, so I'm ok now. I got to take the Bioness devices to NYC and wear regular shoes.
This sudden beeeeeeeeeeep! made me think back to the days of the AFOs. It started with a big ugly tan one. I was having trouble walking down hills. I met with an orthopedist, who had a big ugly tan AFO thing made, which required ugly clunky shoes in which to insert the thing, but allowed me to walk down hills again because it helped me lift my toes so I didn't trip. Over time what I didn't realize was that by helping, it meant I didn't use some muscles as much and they atrophied... translation: the muscles were wasting away.
When I started taking Ampyra, I went to physical therapy and the therapist thought a different brace, a slightly less ugly black one, might help me more. I saw the same orthopedist... he owns a place that makes and sells AFOs, but he only makes the ugly tan ones, so he was a bit tentative about me getting a black one which would not be made by his company. Surely they weren't as good as ugly tan. Then he held up a different kind of black one and laughed at it, as if it was useless, so at least I wasn't asking for it! What he didn't know was that, at physical therapy, I was using that exact other black brace which made him laugh, on my other leg, and it was working well. But we were still dealing with clunky ugly and now old shoes. Muscles were still wasting. But the black AFO did look and function better. Thank goodness for physical therapists!
Finally... enter Bioness. The guy who makes the ugly tan AFOs agreed to meet with me and the Bioness representative, who as a side note drove a BMW. In 90+ degree weather I went to his office where the air-conditioning wasn't working well, and in the 85 degree heat I proved that I couldn't use the Bioness, because my walking wasn't good enough, in the 85 degree heat. I was destined for big clunky ugly old shoes with at best ugly black AFOs. Something didn't feel right.
Almost a year later a friend of my mom's had me try her Bioness. It was a totally different experience. Rather than go back to the ugly tan AFO sales guy who at one point also told me to look toward heaven instead of thinking about this life so much (true story!), I went through physical therapists who were not Bioness reps and also did not make ugly AFOs. They determined Bioness would definitely help, first on the right leg, then on the left. There is no muscle wasting, because these devices stimulate muscle contraction, the kind of contraction that allows my toes to go up.
And then, guess what?!!
Shoes, shoes, shoes! I realized I didn't have to wear the ugly clunky old shoes anymore. I didn't have to talk to the "buy the ugliest tan AFO ever while I tell you to look to heaven" guy anymore. I realized there are those people who claim to be out there to help people like me, and maybe they do help or think they help while they are working on their profits. And then there are, in general, the physical therapists. They want to see people be the best they can be. They want to push people toward that end. And if the end goal is the shoes, then they are all for it. Over the past 3 years, physical therapists have been wonderful.
And the people selling the AFOs? Most of them are fine. I'm sure many have good intentions. AFOs are appropriate for many people. But what if they aren't? Can the AFO types step back and recognize this is an area for physical therapists to determine? I do wonder if the guy who wanted so badly for me to wear the ugly tan AFO which caused muscle deterioration, who is also the same guy who told me to look toward heaven because life on earth is only temporary, is clinging to his business.
A big problem is that while I can look toward heaven, I still am making the most of life here on earth. I am not going to just give up. Would he? Wouldn't he opt for the Bioness?
At the end of the day, it's about the shoes, I'm on earth, and since I'm here, I want shoes I like.