A Different Way

The time came much sooner than I had originally anticipated, but doesn't always?

On May 23, 2013,  I had an issue with the driver's seat in my SUV.  Normally, it would come out of the car and lower to the ground so that I could transfer from my wheelchair into the car.  Something broke and it wouldn't come in and out of the car correctly.  It took almost three months for the part to come in and the seat to be fixed.  During this time I was unable to drive and had to be chauffeured around.

In a matter of three short months, I lost the necessary strength I needed to drive.  I no longer felt safe driving my car.  I was worried about someone slamming on their brakes in front of me and not being able to stop in time.

It was time for the next step, a big step, an expensive step, a step I never wanted to have to make.  I needed to transition to driving from my wheelchair with electronic hand controls.....in a mini van.  (I swore years ago I would never drive a mini van.  Funny how you always eat your own words later in life.)

August 15, 2013 my father and I found ourselves at Mobility Works talking about my options.  I use the word 'options' very loosely.  There were about four models of mini vans to choose from and only one electronic hand control option.

We have learned as my disability has progressed, everything is a process.  We needed to know the proper steps to take and a general time line to getting me back on the road again.   It had already been three long months and I needed my independence back.

The first step was to have a driving evaluation so we would know the exact equipment I would need.  I wasted about six weeks trying to make appointments with two places that wouldn't work for me.  I first tried Shepard's Center in Atlanta, Georgia but they couldn't see me because my prescription wasn't written by a doctor practicing in Georgia (new policy).  I then tried Vanderbilt in Nashville, Tennessee.   Unfortunately, they didn't have the electronic hand controls I was going to require, but were able to point me in the direction of Freedom & Mobility in Marietta, Georgia.

October 7, 2013 Jeremy and I traveled to Marietta for my clinical driving evaluation.  I met with Beth Gibson, an occupational therapist.  We went through about an hour of background questions, mobility tests, driving knowledge, and reaction tests.  To my surprise, immediately after the evaluation, the student van was being set up by Marino Pedroni (driving trainer) for me to drive.

I never imagined I would get to test out the electronic hand controls that day.  Even though I was used to driving a large SUV, I was a little nervous about driving the full size Ford van (later nicknamed the Mother Ship by my husband).  I drove around the parking lot a couple of times with Marino in the front seat and Beth in the back seat.   I was doing so well that I got to drive just up the street to a larger parking lot.  After several laps around the second parking lot, they let me get on the roads.  That's right, they trusted me enough to go play in Atlanta traffic!!  All joking aside, Marino had an instructor brake on his side of the van and could also reach the steering wheel.

I ended up driving for about 30 minutes.  There was a mix of emotions running through me all at once.  After months of not driving, I was trilled to have that control back.  I was nervous because driving with electronic hand controls is an adjustment.  I was sad because this was my new normal.  For the longest, being behind the wheel of a car was always the one place where I felt like I was apart of the able-bodied population again.  But most of all, I was beyond grateful for the technology that exists in todays time for me to still be able to drive.   My new normal was going to allow me the freedom I had been missing for months.

Marino told me I would need hours of training.  It's hard to say exactly how many hours because everyone learns at a different pace.  Marino brought the Mother Ship to Chattanooga on October 14th and 15th for me to continue my training.  I drove us all over the place.  Routes I would take to school, to work and to friends and families houses.  I did so well that Marino thought I could take my test at the DMV.  Since I would be driving with electronic hand controls, I would need special endorsements on my driver's license.

I never thought 16 years after I passed my driving test the first time that I would be back to test with adaptive equipment.   You just never know where life will take you.  After a shaky pre car inspection....let's just say I wasn't sure where the hazard lights were and leave it at that, I passed my road test!!

The next step was picking out a van.  Unfortunately, Mobility Works didn't have exactly what I was looking for so we opted to buy a 2014 Toyota Sienna towards the end of October.  Mobility Works sent it to Braun in Winamac, Indiana for the conversion.  When it returned the first week in December, it had a Braun Xi conversion with an in floor ramp.

Mobility Works was really hoping to have me in my van by Christmas.  I was really hoping to be in my van by Christmas.  Sadly, things don't always go the way we want them to.  EMC (Electric Mobility Controls) had not yet written the installation manuals for the electronic hand controls on 2014 vehicles.   So my van had to go directly to EMC for the wiring and installation of the EMC product.  The general manager with Mobility Works personally came to my office to tell me my van would have to go to Augusta, Maine (needless to say, he knew I wasn't going to be happy about the news).

I was so frustrated!!  I was so close to being able to come and go on my own again.  And now there was another delay that would take weeks!!  UGH!!!  It was completely out of my control.  Mobility Works was doing everything possible to speed the process for me.  All I could do was hurry up and wait.  Have I mentioned that I am NOT a very patient person?

Once the van came back from EMC, it was still not 'ready' for me to drive.  There was a fitting process that had to happen with myself, Mobility Works and Freedom & Mobility.  EMC was not very helpful about giving us an estimated completion date on the van.  Instead, they informed us when it was completely done and ready to ship.  Thankfully, I had been in contract with Marino from Freedom & Mobility about wanting my fitting schedule the instant my van was in Chattanooga.

The stars finally aligned and on January 20th my smiling face was at Mobility Works.  I honestly thought this day would NEVER come.

Driving Timeline

I am FINALLY back on the road again!!!  The freedom of being able to come and go is one of the most important things in my life.  We all have busy schedules and being able to get yourself from point A to point B safely is huge.

There have been tons of questions about my driving with the progression of my disability.  Below is a timeline of how my driving has progressed.  

Age 15 

(1996) 

Even as a teenager, I was so excited about driving.  Just like today, back then, driving represented independence to me.  I was at the DMV the day I turned 15 to take my written test for my learner's permit. I passed and over the course of the next year I drove every chance I could get.  

At the time, my Dad had an old 1989 (something) four door, gold Cadillac.  This thing was a tank!! My friends called it the ghetto sled.  It was used in a bank robbery and had red ink stains all over the back seat from where the ink packs exploded all over the money.  I didn't care!!  It was a car and I was learning to drive.  

Age 16

(1997)

The day I turned 16, I missed school so I could take my driving test.  Once again, I passed and complete independence was almost mine!  My parents had not found me a car yet so I drove an old 1989 Oldsmobile Cutlass Supreme my Dad had.  It wasn't my dream car which was a Nissan 300 ZX but is was none the less a car.  

I wanted a five-speed and about two months after my 16 birthday, my Dad found a four door, five speed 1988 Honda Accord in my price range.  He took me to Middle Valley (about 35 minutes from our house) to pick it up.  

I had driven a five speed in a parking lot once before….it wasn't pretty.  I will never forget that first day in my new to me Honda.  My Dad told me he would follow me home.  It was time to sink or swim.  That was probably the longest ride home ever!  I remember sitting through three cycles on one red light because I could not keep the car from stalling.  I could see my Dad in the rearview mirror horse laughing at me.   It took a lot longer than 35 minutes but we finally made it home all in one piece.

Age 17

(1998)

Once I had saved up a little money, I was ready to get something a little nicer than my Honda Accord.  I still couldn't afford my dream car (Nissan 300 ZX), but I did want a sports car.  I ended up getting a 2 door, automatic Mazda MX6.  I was only able to enjoy my new to me sports car for a short time.

My medical journey had began.  In a very short time, I was too weak to get in and out of the Mazda. My Dad found an old 1988 Ford Bronco II that I could drive.  It was much easier to get in and out of and turned out to be temporary because once off the steroids, I regained some of my strength.

  

Age 18

(1999)

Surprise, surprise!!  Around my 18th birthday I got something even better than my dream car, I got a 1999 Mercedes SLK 230.  It wasn't the five speed I wanted but in was FABULOUS!!  I was completely off the steroids I had been prescribed and starting to regain a lot of my lost strength.

Age 19

(2000)

As much as I LOVED my Mercedes, it was only a two seater car and couldn't haul much.  We located a used Nissan Xterra for me to use as a second vehicle.  It was great to have another car that would hold more people and stuff for road trips.  

Age 21

(2002)

Some girls are intimidated by large cars....I'm not one of those girls!!  I always loved the look of the Chevrolet Suburbans......they were BIG!!  My dad had one and he didn't really like it, he's more of a Ford man.  When he finally decided to get something else he passed it along to me.  Let me tell you, that car went on for days and could haul lots of friends.  It was fabulous!!    

Age 23

(2003) 

As great as the Suburban was, I was starting to have some issues getting in it.  It was so tall that I would have to get my right foot on the running board and then up in the floor of the car.  In the beginning it was okay but as time went on, I needed to use my hands to lift my right leg into the car.  That caused me to balance myself on my left leg.  Getting out of the car was no problem because the car was so tall that my legs were already locked when my feet hit the ground.  I really hated to get rid of the Suburban but I didn't want to risk a fall trying to get in the car.
I must admit I love foreign cars.  And Nissan has always been a favorite of mine.  I ended up trading the Suburban in on a Nissan Pathfinder.  The Pathfinder worked much better for me.  The height was perfect.  It was 'butt height' for me.  All I had to do was slide right into it.  No more lifting my leg.  I could get in and out of it with no problems.

Age 24

(2004)

I still loved driving my Mercedes but I was driving it less and less. That car was almost like a go cart. It was super easy to get in....all I had to do was fall over into it.  It was as close to the ground as you can get!!  The problem was getting out of it.  I just didn't have the quad strength to get out of it anymore.  I still wasn't completely ready to let go of my sports car days so we decide to get me a Lexus SC 430.  It was still a hard top convertible but it was a four seater and it was a little higher off the ground.  I was able to get out of it much better and it was just as fun to drive as the Mercedes had been.

Age 

(2007)

By 2007, I was leaving the house less and less by myself.  My balance was really bad and I was afraid of falling while I was out.  I had put off the use of any assistive devices for as long as I could.  I needed a power wheelchair while out in the community.  I really didn't want a mini van, so we were in the market for a larger SUV that would hold a power wheelchair and a lift.

After many visits to multiple car lots, the only thing that would meet my needs was a Lexus GX 470.  We were able to fit a Bruno curb-sider lift and power wheelchair in the back that I could get in and out without any assistance.  I probably should have made this step months before I did, but I wasn't ready to use a power wheelchair.  

Age 29

2010

I really waited too long before getting my next car.  My mobility had declined to the point I was using the power wheelchair everywhere I went.  I would even bring it in the house when I was at home.  I was walking less and less.  Getting to the back of the car to retrieve my wheelchair was almost impossible.  I needed a change and quick.  

I still didn't want a mini van so I search the internet high and low for any other option I could find.   I lucked upon a company called Freedom Sciences that had a product called ATRS.  Basically, it was a remote control system that allowed you to remotely drive your wheelchair from the driver side of the car to the rear entry and load it on a lift.  The bigger lift and wheelchair required a larger SUV.  Since I got rid of the Suburban years ago because I was having a hard time getting in it, I knew I would need help getting into this new SUV.  No worries, there is a really cool seat base for that.  The driver's seat is replaced with a base that will turn and come out of the car and lower to 18 inches off the ground.  I could transfer from my wheelchair to the driver's seat and remotely drive my wheelchair onto the lift in the back.  And that is how I came to be in a GMC Yukon XL (I told you liked big cars!).

Age 32

(2014)

I loved my Yukon.  It allowed me to still feel as though I was a part of the able bodied community and all while having my wheelchair in the back.  Even thought the car had been adapted, I was still able to drive without any driving modifications.  All and all, it was fabulous...when it worked correctly.  Unfortunately with technology there are always issues.

The seat base broke on May 23, 2013.  By this time, Freedom Sciences had sold to Harmar and they were no longer offering the ATRS system.  It took three months for the seat to finally be fixed.  During this time, I was unable to drive at all and I lost the necessary strength I needed to safely drive.  

It was time.....I was out of options.  I had to have a mini van that I could drive from my wheelchair.  Suddenly when you are completely out of options, the one thing you never wanted becomes very appealing.  After not driving for three months, a mini van became the most fabulous car EVER!!

As of about three weeks ago, I drive from my wheelchair with electronic hand controls.

*****Some of the pictures above are pulled from the internet......I didn't have time to dig through all of my pictures.......I posted the ones I could find.*******

   

Big News

Sometimes people see something in you that you don't even see in yourself.

Sometimes opportunities arise that you never dreamed of.

As most all of you know, I have recently transitioned to driving with electronic hand controls.  This journey has been in the making since August 2013.  I never expected to have to make this transition so soon.  It was not a transition that I was happy about making, but knew it was necessary for me to maintain my independence.

One of the greatest joys in life is the people you meet along the way.  The fabulous people I have met during this process have helped to soften the blow of this next step in my disability.

Freedom & Mobility and Mobility Works make a positive change in peoples lives everyday.  These two companies are able to give independence to individuals with disabilities.  From driving assessments to wheelchair lifts, from handicap accessible vans to driver training, these two companies made a profound impact on my life.

Jeromy at Mobility Works saw something in me that I didn't see in myself.   He saw that I have the ability to help others become more mobile.  He saw that I could personally relate to the customers of Mobility Works.  He saw that I could help better inform the residents of the Chattanooga area of their mobility options.    

Jeromy has offered me a position at Mobility Works.  He is willing to work with my crazy schedule (and my crazy self).  He is willing to guide me along the way because this is all new to me.

I love to help others.  In my mind, there is no problem that is unsolvable, no obstacle to big to over come.  Where there is a will, there is a way.  I am so excited about all the people I will meet.  But I am most excited about helping people with disabilities overcome their mobility issues.  I can't wait to see the smile on their face when they are more mobile and independent.

All the paperwork is done.  It's official.  I am proud to announce that I am the newest team member of Mobility Works of Chattanooga.  If you need help with your mobility needs or know someone who does, please tell them to call me!! 423-308-8267  If you know of a business in Chattanooga that has patients/clients that could benefit from Mobility Works, please let me know!!  I would love nothing more than to help you.  

Many thanks to Jeromy for seeing something in me and giving me this opportunity.  I cannot wait to start helping others with their mobility needs.  :-)

My Story Polymyositis Part One

Now that I had a diagnosis of Polymyositis, my doctors had something to work towards--there were treatments available.  I was placed on 50 mg of prednisone a day and was to have lab work done every two weeks to check my CPK levels.  The goal was for the prednisone to decrease my CPK levels and then tapper me off the prednisone. 

My seventeenth birthday came and went during February of 1998 and my muscles seemed to grow weaker.  I was still having great difficulty rising from a standard height chair.  I would have to place my hands on the seat of the chair and push my body up because my legs alone were not strong enough.  I had to preplan my day in my head so I didn't encounter too many obstacles.  My high school had 4 or 5 steps out front and a sloped grassy lawn off to the side.  Instead of struggling with the steps, I would walk at an angle up the sloped side yard.  By doing this, I drew less attention to myself.  I still tried my hardest to fit in like a normal teenager even though inside I knew my life was anything but normal.

One day, I remember coming down the steps from my Ecology class.  As I was stepping off the very last step onto the first floor hallway, my knee gave out and I fell to the floor.  Books, papers, pens and pencils went everywhere.  I was wearing a jean skirt with tights and a white tank top with a beige cardigan that tied in a bow at top.  There I laid arms and legs everywhere all sprawled out on the floor; I was beyond embarrassed.  How could this be happening to me?  Thankfully, I was given a key to the elevator so I wouldn't have to struggle with the steps at school anymore and hopefully avoid any future falls.  

My lab work and my decreased strength showed that the prednisone was not helping.  Despite being on 50 mg of prednisone a day, my CPK count continued to stay around 10,000-11,000.  In March of 1998, I was bumped up to 70 mg of prednisone a day. 

In the meantime, my mother arranged for me to see a rheumatologist at Vanderbilt in Nashville during April 1998.   Dr. Nancy Olsen reviewed my medical files and decided that I need to add methotrexate (7.5 mg weekly) and folic acid (1mg daily) to my list of meds.  She also suggested that I have an MRI so we would have a baseline to be used for comparison to document the progression of the disease.

Like a good little patient, I immediately begin the new drug regimen that was suggested by Dr. Olsen. Surely my physical condition was about to starting getting better.  My life couldn't go on like this forever…..could it?

I had friends and family that were there for me but I very rarely shared my feelings with them.  I backed myself into a corner where I was all alone.  In my mind, how could anyone understand what I was going through when I didn't really understand it.   I promise this wasn't how I had envisioned my teenage years going.

(Below is a little extra information about the medical terms used….I didn't know what most of them meant at the time.)

CPK (creatine phosphokinase) is an enzyme expressed by various tissues and cell types.  Normal CPK values range for 60 to 400.  Elevated CPK levels can be an indicator to several different issues, one being muscle damage.

Folic acid is a water-soluble B vitamin and  is needed for the proper development of the human body. It is involved in producing the genetic material called DNA and in numerous other bodily functions. (Web MD)

Methotrexate was originally designed as a chemotherapy drug (in high doses), in low doses methotrexate is a generally safe and well tolerated drug in the treatment of certain autoimmune diseases.  The side affects are too long to list and range from diarrhea to death.  (Medline Plus and Wikipedia)

Magnetic resonance imaging (MRI) is a medical imaging technique used in radiology to investigate the anatomy and function of the body in both health and disease. MRI scanners use strong magnetic fields and radio waves to form images of the body. The technique is widely used in hospitals for medical diagnosis, staging of disease and for follow-up without exposure to ionizing radiation. (Wikipedia)

Prednisone is a synthetic corticosteroid drug that is particularly effective as an immunosuppressant drug.  It is used to treat certain inflammatory diseases (such as moderate allergic reactions) and (at higher doses) some types of cancer, but has significant adverse effects. Because it suppresses the Immune system, it leaves patients more susceptible to infections. (Wikipedia)

Polymyositis is a persistent inflammatory muscle disease that causes weakness of the skeletal muscles, which control movement.  Medically, polymyositis is classified as a chronic inflammatory myopathy-one of only three such diseases.  Polymyositis can occur at any age, but mostly affects adults in their 30's, 40's, or 50's.  It's more common in blacks than in whites, and women are affected more often than men are.  Polymyositis signs and symptoms usually develop gradually over weeks or months. (Mayo Clinic)     

My Story The Beginning Part Five

The surgery day stress had brought up a lot of issues and feelings I hadn't thought about.  Worrying about the future wasn't something that I wanted to do.  I just wanted to be a normal teenage with no worries.  So that was what I made my week of recovery about, being a normal teenager.  I got to sleep in late, I had a huge fight with my stepmother, I hung out with friends that I didn't normally see because they went to a different school and I just tried to relax.

I realized as soon as the muscle biopsy results came in my life would change.  At that point, I would either have a diagnosis or the probing and testing would continue.  I knew if I had a diagnosis, then I would forever be 'labeled' and I didn't like the thoughts of that.  But I definitely was not enjoying all the tests the doctors were ordering either.  Really, I hoped I would wake up and have the last several months just be a dream.  Of course that didn't happen.

I only got three days of relaxing before Dr. Brackett called.  My results from the muscle biopsy were in from Dr. Odum.  It was time for another doctor's appointment.

On Friday, January 30, 1998 my parents and I were in Dr. Brackett's waiting room.  Dr. Brackett was a rheumatologist practicing with Arthritis Associates.  We were by far the most youthful group in the entire waiting room.  Most everyone had a head full of grey hair and some sort of assistance device to aid in their walking.  I remember feeling so out of place.  I was a 16 year old girl.  What was I doing in this waiting room?

Once I was called back, my parents and I waited for Dr. Brackett in a small exam room.  My parents had been divorced for a little over four years.  I was glad they were able to come together for me.  I know it had to be awkward for them to sit in that tiny room with me but I was so glad they were both there.  As a way to lighten the mood, my dad was checking out everything in the room.  He opened all the drawers, touched everything on the counter, and played with the instruments hanging on the wall.  I told him I didn't think we were allowed to mess with all that stuff (even though he was doing a great job distracting me).  My dad said that we were helping pay for it with our visit so he thought it was okay for us to touch everything.  I had to laugh at his reasoning.

When Dr. Brackett came in the room, the mood changed.  We all held our breath and waited for the results.  He reviewed with us that my EMG was consistent with myopathy of the upper and lower extremities, my most recent CPK levels were 12,000, and my muscle biopsy was consistent with inflammatory myopathy.   Dr. Brackett and Dr. Odum's impression was that I had Polymyositis.  I had no clue what that was but it didn't sound good.  Tears streamed down my face.  I didn't know what all this would mean for my life and my future.  

Dr. Brackett suggested we start with treatment immediately.  I was to take 50 mg of prednisone everyday.  I need to be on birth control and 1,200 mg of Caltrate-D.  I would return in one month.  Suddenly, everything was going so fast.  We had answers but didn't really know what they all meant.

By the time I left his office, my head was swimming.  Polymyositis and prednisone.  I knew nothing about those things but they were about to take over my life.  We were given pamphlets about each to read up on.  I just wanted to run and hide.  This couldn't possibly be happening to me.

(Below is a little extra info on prednisone and polymyositis….these terms were foreign to me at the time.)

Prednisone is a synthetic corticosteroid drug that is particularly effective as an immunosuppressant drug.  It is used to treat certain inflammatory diseases (such as moderate allergic reactions) and (at higher doses) some types of cancer, but has significant adverse effects. Because it suppresses the Immune system, it leaves patients more susceptible to infections. (Wikipedia)

Polymyositis is a persistent inflammatory muscle disease that causes weakness of the skeletal muscles, which control movement.  Medically, polymyositis is classified as a chronic inflammatory myopathy-one of only three such diseases.  Polymyositis can occur at any age, but mostly affects adults in their 30's, 40's, or 50's.  It's more common in blacks than in whites, and women are affected more often than men are.  Polymyositis signs and symptoms usually develop gradually over weeks or months. (Mayo Clinic)      

Amanda Patterson Szidiropulosz Nominee #2

Amanda Patterson Szidiropulosz

I am so excited to announce my second nominee, Amanda Patterson Szidiropulosz.  Amanda was nominated almost instantly after I posted I would be featuring Tennesseans that also happen to use wheelchairs.  And I love that I have a personal connection with Amanda.  She and I both attended physical therapy at the Cleveland, Tennessee Benchmark Physical Therapy.   I think we can both say that not only did we receive the best treatment but also gained many dear friendships from our time at Benchmark.  

Physical therapist Jeannette (Beach) Davis nominated Amanda and has nothing but wonderful things to say about her.
     "What stands out about her is that when I think of Amanda I don't think of a woman with a disability.  She has never let her medical condition define her although she has lived with it all her life.  If you think about Amanda you think of a beautiful, young, vibrant married woman with a very busy schedule!  Running a household, fitting in vacations, time with her sweet husband, hosting parties, visiting with friends, full time teaching in a profession she loves, giving music lessons and going to school.  I think she is an amazing example to her school and private students who will never doubt the "ability" of a person who just happens to be in a wheelchair.  I guess I see Amanda's wheelchair as more of an accessory then a limitation; she gets around in a wheelchair, I wear glasses, neither defines us, they just make it easier for us to do the work God put us here to do."

Often in our day to day activities, we don't always tell someone what they mean to us or how they touch our lives.  I have reached out to several people close to Amanda so they could share a few words about Amanda and what she means to them.   

Amanda's therapist Dana Slack grew to become a dear friend and wanted to share a few words about Amanda.  
"When I think of Amanda, I do not think of her as someone with a disability. I think of her as someone who is intelligent, caring, independent, an amazing teacher, a hard worker, and a devoted friend. She is a true example of a strong woman who has not let a wheelchair stop her from anything. Amanda is an inspiration to everyone around her, especially the young lives she touches everyday. Her life does not revolve around her disability. She does not use her wheelchair as an excuse. It is merely her means of getting around while she is busy being a wife, teacher, daughter, sister, aunt, and friend."

Collectively, Amanda's mom (Sherry Patterson) and her two sisters (Carissa Benton and Melissa Young) wanted to share some of their thoughts on what an outstanding individual Amanda is.  
  "Amanda was two when she was diagnosed with Congenital Scoliosis and Spina Bifida.  However, neither she nor our parents would allow this diagnosis to shape her life.  Rather, Amanda became the type of person who turned her disabilities into abilities.  From leg braces, back braces, crutches, and now her wheelchair, Amanda has always persevered and inspired.

     Throughout her life, she has never allowed setbacks to cause her to give up on a dream.   She loved basketball, but was unable to play.  So, she contributed to the team by being a stat keeper.  She was able to participate in marching band thanks to the guidance of her mentor, Scott Lee.  Mr. Lee encouraged her to pursue her love of music by seeking her Music Education degree.  Amanda has since taught both high school marching and concert band and now teaches elementary music.    In her elementary music class, she has even taught her students that anyone can dance, even if you are in a wheelchair (or walking chair as her nephew calls it). 

     Amanda has provided numerous opportunities for her students to dream big.   Her elementary choir performs throughout the local community.   She takes them to Dollywood to compete against other choirs.   Her students were even invited to participate in a Disney workshop where they performed onstage at Walt Disney World.  

     Our family couldn’t be more proud of Amanda.  She works hard every day of her life, never gives up, and never complains.  If our society had more people like Amanda, America would be unstoppable."

And last but not least, a few words from Amanda's husband, Damian.

     "As for me, I'm not sure where to even start. Amanda is just an inspiration.  She has an unstoppable positive attitude, humor, grit and some serious organizational skills when it comes to children!  She was on crutches when we met and not long after that she had a surgery that left her confined to a wheelchair.  Actually, she was unable to even roll over in bed without help when she came home from the hospital.  Despite her condition, she managed to roll up her sleeves and work hard to get as mobile as she is today.  It took a while but she never complained and she is always a happy and vibrant person with a magnetic personality.  She's always laughing and has me in stitches. 

     I mentioned grit partly because she deals with bad spasticity that medicine can't always relieve, but also because of an experience she had at the hospital.  She was in the ICU and just got out of her second surgery.  She refused to take the morphine because she knew how addictive it can be and was afraid of adding that kind of complication to her life.  The nurse wound up having to press the pump for her!   

     Lastly, she not only teaches every child at Charleston Elementary school as a music teacher, but she directs a choir of over 50 students and teaches piano/voice out of our home.  I have a hard time keeping up!  Whenever I have a hard day I always think to myself "I need to stop being a wimp, Amanda could handle a day like this in her sleep!"

     She is one of a kind and a never ending source of joy and inspiration."

Amanda describes herself as caring, giving, dedicated, funny, thoughtful, and creative.   I can personally vouch for the creative part as I have seen some of her creations on Facebook.  If you see Amanda quickly rolling somewhere, it's probably because she has spotted a clown.  She really, really hates clowns.  Amanda shares that we just wrapped up her favorite part of the, Christmas.  She loves Christmas and has so many Christmas ornaments that she has to rotate them out from year to year.  (Since she's so creative, I bet she has made some of the ornaments herself.)    

Family is very important to Amanda.  She has been married for 8 years to Damian, 'the most wonderful husband on the planet'!  (Totally her words and not mine.)  Together, Damian and Amanda have two furry children.  Ella and Dexter are Maine Coon cats.  If you have never seen Maine Coons, they are BIG and probably eat as much as a small child.

Amanda grew up in Charleston, Tennessee and her parents still live there.  Amanda is the oldest of three girls and all three of them are teachers! Her middle sister Carissa is a librarian at Roy Waldron Elementary and her youngest sister Melissa is a Kindergarten teacher at Lavergne Lake Elementary.   Thanks to her sisters, Amanda is an aunt to three wonderful nephews.   She proudly states that she loves to spoil them rotten.  My guess is that Ben, Will, and Charlie love being spoiled by their Aunt Amanda!  Even though her sisters live hours away, they are still a very tight knit family.  

Education is very important to Amanda.  Once she graduated from Charleston High School in 1992, she was off to Middle Tennessee State University.  Amanda graduated in December of 1996 with a Bachelor in Music Education.  From there, she went on to receive her Masters in Technology in Teaching from Walden University in 2010.  Personally, I can't wait to call her DOCTOR one day!!  Amanda has completed her Doctorate in Teacher Leadership work through Walden University.  She is currently at the project phase, but decided to take some time off.  Amanda plans to finish her Doctorate in the near future.   

It is no surprise with Amanda's love for education that she is teacher.  Amanda is in her sixteenth year of teaching music.  She spent her first three years as a band director/music education teacher.  The last thirteen years Amanda has been a K-5 teacher/choir director.  Outside of the classroom, Amanda has a studio of private piano students.  

 In her spare time (and I don't really see how she has much of that), Amanda enjoys giving back to her community. She has done several community service projects with her school, such as; Operation Christmas Child, collecting food for Share Your Christmas, and distributing Christmas cards to the elderly during the Choir Christmas Tour.   Several years ago, Amanda partnered with her best friend's husband, who was serving in Iraq at the time, to bring joy to children over seas.  Amanda helped to collect over 400 pounds of stuffed animals and candy to send to the children in a village he (her best friend's husband) was patrolling in Iraq.  

As you can tell, Amanda works A LOT!!  When she's not working, Amanda loves to catch up on her favorite TV shows, read, write, and work on craft projects.  Amanda and her husband also love to go to music concerts.  She says one perk of being in a wheelchair is you get great concert seats (I have to agree with that…..take the perks where you can get them!).  I love that Amanda always looks at the positive things in life!

There is one question that is always asked of individuals in wheelchairs.  Some people just can't help it.  After all it is human nature to be curious.  People that don't know Amanda personally probably want to know why.  Why does Amanda need to use a wheelchair?  Before I tell you, I would like to provide you with a little 'wheelchair etiquette'.  If you run across someone out and about that uses a wheelchair, please don't ask them 'What's wrong with you?'.  I know most all of you are thinking 'I would never do that'.  Well, let me tell you, you would be surprised at the number of people that think it is an okay question to ask.  I get it AT LEAST  once a week.  Let me assure you, there is nothing 'wrong' with someone that uses a wheelchair.  I promise we are exactlly the way God intended us to be.  

Amanda was born with Spina Bifida and Scoliosis.  Spina bifida is a developmental congenital disorder caused by the incomplete closing of the embryonic neutral tube.  Some vertebrae overlying the spinal cord are not fully formed and remain unfused and open.  If the opening is large enough, this allows a portion of the spinal cord to protrude through the opening in the bones.  Spina bifida is one of the most common birth defects with a worldwide incidence of about 1 in every 1,000 births.  Scoliosis is a medical condition in which a person's  spine is curved from side to side.  Although it is a complex three-dimensional deformity, on an x-ray, viewed from the rear, the spine of an individual with scoliosis can resemble as "S" or a "?", rather than a straight line.  (Wikipedia)  For most of Amanda's life she was mobile either with or without crutches. Nine years ago Amanda had a surgery to insert rods in her back to stabilize her spine. After that surgery she lost the use of her left leg, which resulted in her wheelchair use. 

Amanda says that one of her biggest challenges is being independent.  She depends on her husband for a lot of every day tasks.  Because Amanda has steel rods in her back, she cannot bend anywhere except her waist and this really hinders her mobility.  Amanda's current goal is to overcome some of these dependency issues and to be able to do more for herself.  I think independence is a common challenge for anyone with a disability.  I know I want to do as much as I can with as little help as I can get away with.  

Sometimes the general population has misconceptions about people who use wheelchairs.  Amanda says she wishes she could stick to just one misconception that people have but there are so many!  One thing that irritates her is when people sometimes assume that because you are physically challenged, you are mentally challenged as well.  Amanda has had people come up to her and speak loudly and very slowly, which she finds insulting.  Another misconception is that being in a wheelchair is fun.  People sometimes tend to not consider all the obstacles individuals in wheelchairs face.  The final misconception that bothers Amanda is that people assume that if you are in a wheelchair, you are on disability and do not work.  Amanda has a great education and goes to work everyday.  She loves her job and will continue to work until she can't work anymore.

I asked Amanda where she saw herself in 5 years.  Her response was that she would still be teaching children to love music.  Amanda also says that she will continue to show the children she teaches that there are no limits to what you can achieve in life!

I whole heartedly agree!!  It has been an honor to feature Amanda as a nominee.  Personally, I think everyone reading this should come support Amanda in the Ms Wheelchair Tennessee 2014 pageant.  Amanda is going to make a fabulous contestant!!

Amanda, thank you for being an amazing inspiration for all the children you teach.  

Back to My Story

     Part of my platform was to share my story about life with a disability.  I started by telling about my childhood and sharing pictures of my family.  I enjoyed looking back at my carefree days as a child and remembering the family unit I came from.  Next, I shared about when I first starting noticing problems.  I had a hard time climbing steps and walking long distances.  This lead to me sharing about several doctor's visits that began a series of tests and my first muscle biopsy.

     And then I stopped.  I completely quit sharing my story.  There have been countless people who have asked when the next blog post would be.  People are really interested in hearing my story and I stopped.  I just stopped telling it.  I would blame my busy schedule or come up with some other excuse as to why I hadn't written anymore.

     In the beginning, I think I really believed those excuses.  I just had too much going on or so I told myself.  As the weeks turned into months, I knew there was more to it.  The deeper I dug into my medical records, the harder it was to relive those years of my life.

     I am not an emotional person.  I don't like to cry.  While pouring over my medical records so I could provided the most detailed and accurate information for my blog, there would be tears streaming down my face.

     So I stopped.  I made excuses.  I put my medical files aside and said I was too busy to write blogs about my life with a disability.  When really, I didn't want to relive those hard moments in my life.  I didn't want to remember all the things that I used to be able to do and I can no longer do.

     I never realized all the emotional baggage I would have to unpack in order to share my story.  I thought it would be easy to tell.  I lived it, so how hard could it be to share it with others? Much harder than I ever imagined.

     One thing I am not is a quitter, so easy or not, I have a story to tell.  I have drawn people into my life story and I owe them more than just the beginning to that story.  I owe them the entire story.

     If you have been here since the beginning of my blog, thanks for hanging in.  If you have just started following my blog, thanks for coming.  I hope you take the time to look back to the beginning of my journey.

     I plan to continue and finish my story.  I hope you enjoy.  :-)