CMT:

CMT1A is a rare (1:5,000) hereditary motor and sensory demyelinating peripheral neuropathy (also known as Hereditary Motor and Sensory Neuropathy, HMSN) which is caused by an intrachromosomal duplication and consecutive toxic overexpression of the PMP22 gene on chromosome 17. CMT1A is one of the most common inherited peripheral nerve-related disorders which is passed down through families in an autosomal dominant fashion. CMT1A disease becomes evident in young adulthood and slowly progresses with distally pronounced muscle weakness and numbness. Pain can range from mild to severe. The disease can be highly debilitating with patients becoming wheel chair-bound and is often accompanied by severe cases of neurological pain. There is no known cure for this incapacitating disease.

Thursday, August 28, 2014

Stander highs and lows!


My 2nd time in the stander, my goal was 10 minutes but we found out very fast that this will be much harder than we thought. After only a couple minutes of being in the stander my feet and ankles were in so much pain (know this blog will be about my true honest experience,so I will say exactly how each day goes and that is very hard for me because I am use to not showing or saying when I am in pain to anyone besides Brandon, my husband) So after I was in the stander for just a couple minutes, the pain shocked the hell out of me. Brandon got me down and helped me through the pain that didn't go away for hours, it felt like my ankles and feet had thousands of needles filed with a burning liquid going into me. It burned for at least 2 hours and this was only after being in the stander for about 5 minutes. So now my plan is to go into the stander just for a few minutes each day and start from a lower incline and work my way up until it gets better. I'm scared of the pain and it's going to be so hard but I will keep going. But we didn't expect just standing would cause this much reaction but we didn't know what to expect from what I am trying to achieve, we knew the walking bit would be unimaginable but we didn't know just standing would be this bad and I am even in a contraption that stands me up without me trying.

3 comments:

  1. Dear Tya!

    You are so wonderful, so brave,... struggeling with such a severe disease, but standing and smiling!
    While I´m writing this, I recognize my (little) pain in my feet after a long day of work. Despite I always wear very soft shoes (especially soft inner soles), which fits me very well, my feet hurt. We know that is CMT. But they hurt so much more, when I `m walking barefoot. So I fell a little bit anxiety about your damaged nerves, when I watch you standing barefoot on a wooden board. It`s just because of my experience with very sensitive nerves. Maybe you could put a little piece of something like a yoga mat under your feet? Maybe it could protect your damaged nerves a little bit from standing. In addition you have high arches, your weight is only on a few points of your feet, so there is so much pressure.
    I also experienced a pressure palsy after a few minutes in surgery, when they fixed my leg with belts under the knee, without usings pads. There is a nerve coming out under the knee, which supplies the muscle "peroneus", which is so important for walking. So after that short surgery using belts without pads, I got a palsy...So when watching your pic, I also imaging, that it would protect this long and important nerve a little bit more, using some pads under the belt? Just my thoughts and maybe a good thing for your nerves...
    I wish you the best and I believe in your power.
    With love and prayers for you,
    rainbow
    With love,
    rainbow

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  2. Thank you so much for the amazing advice, I will try that!

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  3. I can't say that I would have your courage or drive. You're an inspiration, Tya. <3

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