A Different Me!

In life we are in a constant state of change, not just physical changes but emotional changes as well, and let's not forget the soul. 

Dystonic muscles were not always a part of my life.  I could walk, jump, run and scamper with the best of them.  Little hints of what to come were there but not recognized as a future nemesis.   For the most part the body gave what it was supposed to, and I accepted the rewards without question.  I made it through the teen years, worked, and had lots of fun in between.  Next came the married with kids years, where I am very thankful that I was able to raise me kids without my mobility disorder plaguing me.  

Once it was confirmed that there was a neuromuscular problem, something in me changed.   My persona became different and at times unrecognizable.  In the early years I was outgoing by nature, never meeting a stranger, and in truth I probably scared many away with my constant chatter.  I lived life out in the open, always ready for some fun.  However, when my symptoms began my personality began to change as well.  With each stumble and fall, a small fraction of me changed with my confidence level starting to wane.  I became aware of crowds,  and I felt embarrassed to walk in front of them.   The first time that happened I was totally shocked.  I was a person who in her former life could talk to a crowd of a thousand people without any problem.  With each phase of my disease I changed a little more.  I used to love to go to Starbucks and get a treat, but when I'm in between Botox shots for my voice I shy away.  My husband tells me to just drive up and tell them what I want, but that's easier said than done.  I am now shy, and I worry what others will think.  I know I shouldn't, but I do!

With my mind and body changing another part has changed as well, my soul.  My soul is who I am, good or bad.  The inner me now looks at life a bit differently.  I treasure every moment of this beautiful world, and I thank God for letting me live in the time of medical miracles.  No longer do I worry and stress about the small stuff.  I am more empathetic towards people and less judgmental.  I am in no way thankful for my disease!  I would much rather be healthy, but my disease has forever changed me; mind, body, and soul.

How have you been changed?




Embracing the life that we have been given!

Do you remember when you got your diagnosis? Maybe you remember everything about that day. Like what you were wearing, what the weather was like, or what you had for dinner. For some of you it may have been like falling off a cliff and never reaching bottom, A nightmare that became reality.  Many of us have a common thread that runs through our bodies, unfortunately, our thread started to ravel and became the disease we live with today .

Focus on the positive

My disease was not exactly a surprise. You see, my sister had been diagnosed in 1996. After a misdiagnosis of Parkinson’s disease she was eventually properly diagnosed with Hereditary Neuropathy. You would think her diagnosis would have made mine a breeze to accept. Not exactly! If anything it made me run scared from any trip, fall, muscle twitch, muscle cramp or really any malady. I did not want to accept that I was losing the genetic crapshoot. My life would forever change with that roll.

That’s it my friends! We need to focus on what we have, not what we have lost. What we can do, not what we can’t!

That is why I am starting this blog, to reach others and let everyone know that we are going to be fine, yes, life does become difficult many times, but if you’re anything like me you just roll with the punches.

I am a certified teacher, but I had to give up my position due to my disease. Teaching became way to difficult to navigate my body through the course of the day. The part that really stinks is, I loved teaching. I truly enjoyed instructing my students in their academic content but also teaching life lessons.

After that experience I embraced my life in a new way. No one would choose to be disabled, but since I am and I have only one life, I’m going to make it count. I’m going to Rock That Cane and let the world know I’m here.

Dawn - Rock the Cane