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I Fell And I Can’t Get Up – CMT Bad Days Exist

November 8, 2017 by Ashley 2 Comments

This post is a little late as I intended for it though be posted in September because it was Charcot-Marie-Tooth disease awareness month. I didn’t want to bombard people with boring statistics about my disease. Instead I wanted to talk about one of the big things that I deal with being a person with CMT. One thing I wanted to showcase is that my life isn’t always easy.  I do get CMT bad days as I call them.  They are days when nothing seems to go right.

The scariest moment I have had as a mother happened to me when my son was around 9 months old, I’ll be honest that I can’t remember exactly how old my son was when this happened, but the day will be I gained in my memory for life. When my son was little I did a lot of running around the house because he was not an easy baby. I could never set him down for long before the screaming began.

On this particular day my son was acting up and I needed to get more diapers and wipes from his room in the basement. I laid him down in the living room in a spot where he couldn’t be hurt if he rolled over. I was thankful that he didn’t really like rolling over and wasn’t mobile. It was supposed to be a fast and easy task, but he had started screaming before I even set foot on the stairs. The next part is a blur. I panicked and moved too fast; the next thing I knew I was on the bottom of the stairs. We don’t even have just a single flight of stairs; we have a split set of stairs that I somehow slid down the stairs.

This was one of my CMT bad days.

When I tried to get up I just couldn’t. My whole body was in shock. I could barely feel my hands and feet. My legs wouldn’t hold any weight. Heck I couldn’t even sit on the ground because I was hurting so bad. I “crawled” which was actually me dragging my lower half across the floor 10 feet to get to my phone. I called a neighbor, but she wasn’t home. I was really starting to panic because my son was screaming at the top of his lungs and all I wanted to do was be there for him.

I turned back around and dragged myself up the stairs without letting my feet or ankles hit the stairs because that made me feel like I was going to black out. I can’t tell you how long it took me to get to my son, but I did it. I was bawling my eyes out as I picked him up. All I could do was hold him close to me. I felt like the worst mother. I had felt like I failed my son and it was all because of this stupid disease that I have.

In the moment I felt helpless holding my helpless son. It was in that moment that everything changed.

From that moment on I told myself that I was going to do everything in my power to keep myself safe and care for my son. I make sure that if I am feeling flustered or feel like my body is getting stressed out I take it easy and move slow to help prevent myself from letting my body get out of control. I struggle every day with caring for my son. Some days are easier and some are harder, but in general I manage every day.

Do you have any daily struggles that you live with?

Filed Under: Featured, Parenting Tagged With: Charcot–Marie–Tooth disease, CMT, Disability, Disabled, Parenting

Not Ashamed – #WordlessWednesday

June 18, 2014 by Ashley Leave a Comment

AFOs

I love this picture I took when I was at the farm in Ohio. No I am not ashamed of my AFOs.

Filed Under: Featured, Health Tagged With: BE Society, Charcot Marie Tooth, Charcot–Marie–Tooth disease, Wordless Wednesday

When I Wish Upon a Star… My 3 Wishes

June 6, 2014 by Ashley 1 Comment

Weee! Another day is here and this is another fun little post from the BE Society’s June Challenge.  We have a few people linked up, but can always use some more.  So, go check out the challenge for this month and while you are at it check out all of the BE Society June Challenge posts that I have written so far.

June 6th – If you could have 3 wishes, what would you wish for?

wish

Out of all of the posts so far this one is very tough for me.  You would think that making three wishes would be a lot easier that it really is.  I guess it could also be me over thinking things which is completely plausible, but I want to take this seriously as if I was actually getting the three wishes.

1.  A cure/treatment for Charcot Marie Tooth disease.

2.  Monthly payments of $3000 monthly to live off of.

3.  I would save my third wish so that I could use it in a time of need.

After deciding on my wishes they seem very selfish, but I think most people’s wishes would be.  To me these wishes would be the best things ever.  I would be happy to  be able to do the things I love because of monthly income that would make it so that I could live comfortably.  The cure/treatment for CMT is a given since myself and so many people that I know are affected by the disease.

Filed Under: Featured Tagged With: BE Society, BE Society June Challenge, Charcot–Marie–Tooth disease, CMT, Conditions and Diseases, Health, Peripheral nervous system

Tips For Living With CMT

June 21, 2013 by Ashley Leave a Comment

Tips for living with cmt

Living with Charcot Marie Tooth Disease isn’t always the easiest thing to do, but you do want to keep yourself strong and active.  These are some tips for things that I have learned over the years that have helped myself and my mother out.  Many are very easy and are things that you can do on your own while relaxing or being busy through out your daily life.

Tips For Living With CMT

  1. Carry a stress ball or therapy putty with you everywhere.  Your hands are very important as you do not want to lose strength in them.  So, in those moments when you find yourself just sitting and waiting pull these out and work those hands.  Keep them strong.  This will help you keep some muscle and strengthen your hands.
  2. Stretch while watching TV.  This is a lot easier than you would think.  I will write up a post later on specific stretches but you can sit and do many of the stretches that I know you probably dreaded in school for the fitness tests.  Stretch out those legs and arms.
  3. Foot care is important.  Trim your toenails diligently.  You might not be diabetic but many of the same things apply to people with CMT.  If you have less feeling you want to check for sores and wounds on your feet.  If your feet are cold like mine make sure you keep them dry. Wet feet grow fungus.
  4. Get the right shoe for you.  If you have arches like me you need to worry about high toe boxes, and shoes that are built taller.  Do NOT buy a bigger shoe size instead buy a wider shoe.  Even if you wear AFOs and know your foot won’t move in the shoe you do not want a shoe that is too big length wise because it will increase the likelihood of you tripping over your feet.
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Filed Under: Featured Tagged With: Accessories, Charcot–Marie–Tooth disease, Conditions and Diseases, Fashion, Foot, Health, Shoe, Shoe size, Shopping, Tips, United States

The CMT Foot

April 15, 2013 by Ashley 4 Comments

How is the CMT Foot different from the average foot?

Pes cavus
Pes cavus (Photo credit: EUSKALANATO)

I know many people ask me how my feet differ from everyone else’s and they often ask this because they never see my feet. I tend to always have socks on my feet because they are so chilly.  Most Charcot Marie Tooth feet are what doctor’s call a Pes Cavus foot.  Before I took medical terminology in college I did not actually know what this meant.  All I knew what I have a Pes Cavus foot.  Isn’t that awesome?  It told me a lot… NOT.

Now, I was so excited to find this picture because it is going to show you a lot of what I am talking about.  As you can see the long bone in the arch that the big toe is attached to drops down drastically which the average foot does not have.  This bone placement is what causes the high arch of the foot.  You can see the difference in the second image that depicts the average foot.  You can see that there is a drastic change in the arch and toes as well as tendons of the foot.

Normal foot
Normal foot (Photo credit: EUSKALANATO)

Now that we have looked at and talked about that I want to point out how little of the foot actually touches the floor.  One day I want to get some paint and make my foot print on a piece of paper to show you just how little of my foot touches the ground and causes much of the balance problems that I have because of the CMT.  You can kind of see how little touches.  The foot will touch down on the heel, toe base, and along a thin line on the outside of the foot.  In addition to this “hammer toes” is very common among CMT patients where the toes curl and only the tips of the toes touch the ground.

A great way to show you what this feels like is to take your hand and put all of your fingertips onto the tabletop in front of you.  Your fingernails should be touching or almost touching the table and you now put weight down on them and you can get an idea of the kind of pain  that comes with standing on toes like that all of the time

Filed Under: Featured, Health Tagged With: Charcot–Marie–Tooth disease, CMT, Conditions and Diseases, feet, Foot, Health, Peripheral nervous system, Pes cavus, Photograph, Toe, United States

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