Jun. 4th, 2013

alysten: (PandaWhale)

I figure I should just explain why shoes and I don't get along. Not that anyone should care, but I will explain anyway.

I have a neuromuscular disease, called CMT (Charcot-Marie-Tooth).  It is the most common of the "rare diseases" which effect motor and sensory function, 125,000 cases in the US. It is caused by the demyelization of the nerves. Since the myelin sheath is what conducts the signals, the nerve can no longer send the correct signals to the muscles. And the nerves that stimulate movement are the most severely effected.  It starts in the feet and legs, and can progress into the hands and arms. There is no cure. And I have had it all of my life.

My disease has progressed to the point where it effects my feet, legs, hands and sometimes my lower arms.  I have had 5 corrective foot surgeries, which have taken almost 4 years to recover from. I have gained stability and balance and a bit more time.  My bones in my foot had elongated to the point where I was going to start getting random stress fractures. All of my toes are fused straight. I have 2 screws in each foot.  I have had 12 different tendons lengthened.  I have had most of my rt. planar fascia removed.

I forget how to walk.  Walking is not an automatic thing for me. I have to remember to pick my feet up off the ground and put them down in front of me.  Very much like Winter Warlock in "santa claus is coming to town", I put one foot in front of the other...  If I am very tired, and I have taken my drugs, you may notice, that toddle like a panda. You will probably also see my slap my foot down as I step and that I start walking with a pronounced "V".

If I am at an SCA event, you will see my shoes. Either I have my skirts hiked up, or the cut of the gown is such that it comes up to my ankle. It is a rare dress that goes all the way to the ground and usually I will wear a hoop so that I have free foot movement.  I can bow to the crown, but I cannot kneel. I am just beginning to figure out how to get up off the ground. It usually requires a solid surface and non-skirt restricted movement. And it is anything but graceful. I mean no disrespect, but will not be kneeling before any crowns anytime soon.

This brings me to shoes. My SCA shoes are not period and I don't care. I cannot wear those yet. I can barely wear normal shoes. I have 2 pair of shoes I can wear for more than 8 hours and they are skateboarding sneakers (specifically vans). And I am finding I have a devil of a time trying to find shoes that will work.

Normal shoes have to pass a "bend test".  This means if you take the heel and toe, and bend them up, they have to have little to no bend in them. The soles need to be stiff and relatively flat. I cannot wear anything greater than an 1" heel. I need a wider than average toe box, but not a wide shoe. If a shoe is too wide, then my toes slide forward into the toe box. I have five "funny bones" at the end of each foot (each toe is fused straight). Imagine hitting your funny bone all day long, just from walking. Now multiply it by 10. Straps cannot cut across the 6" scar line across the top of each foot. And cannot push the right foot flat, as that will hit the 5" scar across the sole. Mary Jane shoes, with the cutouts to the toe, cannot be cut too far down the foot, or it puts pressure across the scar lines on the top of each toe. A shoe must have a wide enough mouth for me to bend my foot into.  My toes don't flex to make it into the shoe.

That is the short list. Every person's journey with CMT is different. My doctor knew what he was looking for, as he had treated my mother. I grew up knowing what I had. I also had a great support system, who always pushed me to do my best. I try to not let CMT stop me from anything I want to do. I may have a hard time opening a jar or working a zipper, but that never stops me from giving it a go. I can be stubborn. I never want to admit that I have a handicap, that I am somehow less than anyone else.  The drugs help, moving helps, and a bit of stubborn helps.

For a visual understanding here is a pic of what exactly they did to each foot, taken 1 week after they removed 1 pin in the big toe.

Click for pic. Or dont to skip. )

May 2015


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