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Williamsburg, VA—Woman with CMT Featured as "Igniter"

[From] Today I have the pleasure and honor of introducing our first Featured Igniter, Nancy Mollner. What is an Igniter you ask? An Igniter is someone who is making a difference in this world by using their abilities to create change and awareness. Nancy is just that person. I met Nancy 6 years ago, she is my neighbor. Nancy among many other things has the disorder CMT. I have asked her to share her story with you to further advance the awareness of CMT and to allow you a glimpse into her world.  So without further ado, please meet Nancy:

Well, it is a rainy day and I have a few moments to myself so here I go……

When I was in elementary school, I was told to run the 600 yard dash.  Looking at my petite and healthy frame, most would assume I would do pretty well at this.  I remember trying to run as hard and as fast as I could but I seemed to be getting nowhere pretty quickly.  It was as though I was running in place.  Well, I did finish that race, each and every time I was told to do it, but I was always one of the last two or three to cross the finish line and I was usually walking by the end.

As I got a little older, I was twisting my ankles more and more.  Never could I wear a pair of high heels.  Lots of band-aids were purchased and worn due to frequent falls.  I was known as “the band-aid kid.”  Looking at my feet, I noticed that my toes were curling and my arch was quite high. I always walked a bit funny, at one point walking toe-to-heal.  Never could I sneak up on anyone as my feet loudly flopped to the floor with each step (foot-drop).  “Friends” said I waddled like a duck.

My mother, Gretchen, shared these observations with her orthopedist.  An MRI and an EMG were performed.  The MRI was “fun” as I had to look at myself in the mirror for 45 minutes while lying in this skinning tube trying not to move…something that is hard for someone with tremor to do.  Needless to say, I was yelled at a few times by the technicians.  The “fun” continued when I walked into the room to get the EMG as another girl my age walked out and said, “That really hurts.”  Well, I survived the testing and low and behold I had my diagnosis!  At the age of 16, I was told I had Charcot-Marie-Tooth Disorder or CMT.

CMT is the most common inherited peripheral neuropathy and was named after the three scientists who discovered it in 1886.  CMT causes the sensory and motor nerves in the arms, hands, feet, and legs to not function properly.  As a result, your muscles atrophy or waste away over time from lack of stimulation.  Your ability to feel and sense hot/cold, pain, and other sensations also deteriorates or is otherwise altered.

Functionally, CMT means you slowly lose the ability to walk normally and to use your hands for such things as writing, zippering, buttoning, opening jars, or clipping your fingernails.  CMT is a progressive disorder, meaning it gets worse over time but with no predictable course.  CMT also varies in severity from person to person, even within the same family.

Some individuals have CMT but show very few symptoms or problems.  Others, like myself, have clear difficulties with walking and may use Ankle-Foot-Orthotics (AFOs) to assist them.  Still others, the most severely affected, may use a wheelchair for mobility.  Signs of the disorder may manifest in early childhood or may be masked until mid-adulthood.  It is a very individualized disorder.  It is also an “equal opportunity” disease affecting men and women and people of all races and ethnic backgrounds.  Around the world there is an estimate 2.6 million people with CMT.  In the USA, about 1 in every 2500 people have CMT.

When you experience something “rare,” it can be lonely.  And when you experience something that slowly takes away your ability to use your body as you once could, it can be depressing.   At the same time, having a disorder like CMT can also help you not take what you have for granted.  It can help you appreciate what you have at that very moment as you know how precious it is and at any moment it can be taken away.  It encourages you to LIVE your life and not just watch it pass you by.  It makes you humble.  It makes you realize how lucky you really are as there are so many other people who have even greater challenges that you.  It makes you sensitive to the needs of others.

I am working on a “bucket list” of things I want to do before I am no longer physically able.  Activities like white water rafting, traveling through Europe, trapezing, and jumping out of an airplane (with a guide, of course).  I already ski and snow tube with my kids once a year (the boots support my legs like my braces do).  I have ridden a mechanical bull and have attempted to rock climb (that didn’t go over too well as I can’t lift my body very well).

It is important for individuals with CMT to engage in moderate exercise and maintain a healthy body weight.  I have worked with a few physical and occupational therapists who help me to exercise the muscles that remain in my hands/arms and legs/feet.  I also walk, ride my bike, and do low impact aerobics.  As my balance and muscle strength deteriorates, I have found my ability to do some of the “moves” I use to do decline.  I focus instead on what I can still do and recognize that all movement is helpful.

If you ever meet someone with CMT or any other disability, talk with them.  Look at them.  Ask questions.  They want to know that you recognize what they are going through.  Once you ask your questions and establish a dialogue, just be a friend as you would to any other.  If you see someone struggling to carry in their groceries, ask if you can help.  If your assistance is turned down, know that it is appreciated and that for many individuals with disabilities it is very important to use to maintain our sense of independence.  It is also imperative that we learn to accept help when it is needed.  So, again, don’t be afraid to ask.

This past September 19-25, 2010 was the first annual CMT Awareness Week, sponsored by the Charcot-Marie-Tooth Association (CMTA).  The CMTA is a wonderful organization that provides support to the CMT community through conferences, informational materials, support groups, etc.  I and a fellow CMTer, Jennie Overstreet, started a CMT support group here in the Williamsburg Area last September 2009.  We have about 10-15 individuals attend each time we meet, which is every other month at the Williamsburg Regional Library.  Our next meeting is Saturday, November 13, 2010 from 2:30 to 4:30.

In the past year we have had presentations given by a podiatrist, an orthotist, a representative from Disability, and a physical therapist.   My most treasured meeting so far was the one where we focused on sharing how CMT has impacted us socially and emotionally.  We discussed how as our CMT progresses over time, we continually go through stages of grief.  We also shared strategies for overcoming our challenges.

While having CMT can be scary, annoying, and frustrating, it is not the end of the world.  Everyone has “something” that is challenging to them.  That is just Life!  There are no guarantees.  It is how we deal with our experiences that matters.  So, I CHOOSE to focus on what I can do.  I choose to enjoy and use my abilities NOW.

I want to thank Nancy for sharing her story with us. I learned something as I read this. I have never asked Nancy about the braces she wears. It wasn’t because I didn’t care, I just didn’t want to be “nosey.” Nancy has taught me that it’s okay to ask and to take an interest. Anytime I am enlightened, is a pause for gratitude. Thank you for taking an interest and sharing Nancy’s story with others. Have a great day.

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