The Speak Foundation Conference

Speak Foundation Conference
July 26-27, 2013
Buckhead, Georgia

What a fabulous weekend getting to know new people with a similar diagnosis. 

I was invited by Kathryn Bryant, Speak Foundation Founder, to be a guest speaker during one of the sessions.

It's still odd to me that I am a guest speaker at anything. I still think of myself as an average girl, raising a family, working, going to school, and just enjoying life. 

The Speak Foundation was created as a way for other Muscular Dystrophy patients to connect with one another. 

TSF (The Speak Foundation) Mission:

The Speak Foundation is an organization that is dedicated to helping people of all ages overcome the challenges of muscular dystrophy and other physical health conditions. Our organization is full of volunteers who live daily with some of the greatest challenges and are also the most inspiring people we have ever met. We share how to overcome obstacles at our national conference each year. Because muscular dystrophy services are being reduced in many other areas, people with muscular dystrophy are in need of help and in great need of hope. There is no cure or treatment for this disease yet. Each year, TSF provides a free national conference to people who are overcoming the life challenge of muscular dystrophy or other serious physical health conditions.

In addition to our desire to connect the lives of individuals with muscular dystrophy or other health conditions, through events like our annual Speak Retreat and Conference, the Speak Foundation is a Christian organization that seeks to promote the charity and welfare of physically ill children who are poor or orphaned in our country and internationally. It is a part of the mission of the Speak Foundation to speak up for those who are unable to speak for themselves. 

This weekend's conference is the first time some of these individuals have ever even met someone with a similar diagnosis.  Everyone is in a different stage of illness (for lack of better word).  It is wonderful to have an opportunity to share information about what works and doesn't work with people have have actual been there already and experienced certain changes.  Trust me when I say we do a lot of thinking outside the box to make everyday activities work for us.  

My weakness has progressed much further than some and not as much as others.  There were several younger ladies who used a power chair for distance purposes only.  They could still walk, just not very far.  I remember those days.  I almost felt like a 'has been' because I had already been there done that.  Lol!  I know that these girls still have so many more wonderful opportunities to experience.  And I also know that if they have to start using the chair full time the wonderful opportunities don't stop there!!  I was pregnant and in my wheelchair full time.  There are no limits to what you can do.  You just have to be willing to do things a little different, and different is GOOD!!

I really look forward to this being a conference I attend every year.  Thanks to The Speak Foundation, I now have more friends across the country.  It was a pleasure to meet everyone and I look forward to staying in touch with them until next year.  

New Wheelchair

I am officially apart of the Permobil family.

Yesterday, Mike Apple with Apple Independence Mobility delivered my brand new Permobil M300 in POP STAR PINK!!  I have been working with Apple Independence Mobility for about 6 years now.  I must say that I LOVE them all!!  And I think I have meet just about everybody that works there.  It is a wonderful family owed business and they really care about their customers.  

I am very excited about this chair and what it means for my comfort and overall health.

My old power chair had a seat elevator that allowed me enough height to preform my standing transfers, but no other special features.

My NEW power chair has a seat elevator that extends 10 inches (this is a couple inches higher than the old chair).  It also has tilt and recline features.  This will allow me to reposition throughout the day.  The hope is that these features will help me to NOT get any pressure sores or have any pain due to pressure.    The feature that I may be most excited about is the foot rest lift.  Since my pregnancy, my feet have been swelling really bad.  The foot rest lift will allow me to elevate my feet during the day.  This should help tremendously with my circulation.

I am super ecstatic about my new chair; however, anything new is always a huge adjustment for me.  The slightest difference can greatly affect my mobility, and not in a positive way.

When I got my Invcare power chair 3 years ago, I almost took my big toe off.  No joke.  I thought it was super cool that I didn't have to have my foot plate down to ride around.  My feet could just dangle and not really drag the ground.  Out in my driveway, I found out very quickly why that was a bad ideal.  I made a sharp turn and my big toe got caught under the front wheel. I'm really not sure how I didn't flop out of the chair into the driveway.  I did come back with a bloody toe.  Below is a picture of the scar to remind me why a foot plate is so important and should be used.

I kept this story in the back of my mind yesterday because I knew the odds of another accident where pretty high. What I didn't realize is that it would happen only 20 minutes after Mike Apple left my house.  Mike lowered the armrest so that the joystick would fit underneath my desk in the office.  After Mike left, Annabelle want to test the new chair out with me, so I tilted and reclined so she could lay back.  She loved it!!

Annabelle and Faye (my friend that helps with Annabelle) decided to go out on the back porch so I could get a little work done.  I went back to the office and parked under the desk.  After I let go of the joystick is when I knew something wasn't right.  There was not enough space for the joystick to go back to the up right position and stop the chair from moving.  Instead, the joystick was pressing forward and the the right.  In the split second before my body was completely crushed into the desk, I place my left hand and arm on the desk to try and push back with it.  I was unable to push myself away from the desk.  Instead, the chair continued to move forward and to the right pinning me all the more.  I thought my thumb was going to rip off.  (Good thing I am double jointed.)  I screamed and yelled at the top of my lungs, in part from pain but mostly out of fear.  There was no way I could turn the chair off or get the joystick unstuck.  I was panicking.  Faye and Annabelle never came, I am convinced they are both deaf.  Lol.  After about three minutes, I was able to twist the joystick back towards me to free myself.
Three minutes isn't a very long time but when you are stuck and in pain, it feels like an eternity.

This is kind of what it looked like yesterday.

(I promise my desk doesn't alway look this bad, I had a busy week last week!)

My arm was completely mashed against the desk and the back of the wheelchair. 

My thumb was under the desk.

I went out to get Faye and Annabelle.  Faye fixed a bag of ice for my arm and thumb.  We realized that when I did the tilt and recline for Annabelle that I didn't get the chair completely back in the upright position before going back to my office.  Hopefully this is my one and only accident with my new chair.

Yesterday right after I freed myself.

My bruise today.

My thumb is red and super sore on the inside of the joint. 

If you get a new power chair, PLEASE BE VERY CAREFUL!!!  Everything is different and you need to take the time to adjust.  Learn from my story.  :-)

Media Coverage of MWA

News Channel 12 was on hand to cover my airport homecoming.  News reporter/anchor Erik Avanier was at the pageant in March when I was crowned Ms Wheelchair Tennessee, so it was quite fitting that he was at the Chattanooga Airport to welcome me home after being Ms Wheelchair America First Runner Up.  Thanks so much to Erik and News Channel 12 for letting me know that Chattanooga cares.  :-)

Watch the coverage here.  News Channel 12 Homecoming


The Chattanooga Times Free Press also had an article in the paper on Monday.

Read more here.  Chattanooga Times Free Press Article

There was also an article on The Chattanoogan.com website on Monday.

Read more here.  The Chattanoogan.com Article 

If there are any other articles that you have seen, please let me know.  I would love to add them to the list.

I hope in the next few weeks there are several more in-depth news articles and interviews.  It is important for others with disabilities to see that there is WAY more to life than their disability.  I want to help show the 54 million Americas with disabilities that have a disability is NOTHING to be ashamed of.  We can accomplish anything we put our minds to.

MWA-Saturday

Day Six
July 20, 2013

What an incredible night!!  What an incredible week!! What an incredible last four months!! 

Since most all of you already know how the evening turned out I will not wait to say.....

I am honored to be Ms Wheelchair America 2014 First Runner Up!! 

Congratulations to Ms Wheelchair America 2014 Jenny Adams!!!!  

I can not wait to follow her year as Ms Wheelchair America 2014. I have no doubt that she will touch the hearts of everyone she comes in contact with. I am excited to watch her live her dream. It will be an honor to have her visit our great state of Tennessee. Let's plan something super special for her because she deserves it!!  

I have to confess that I arrived on Monday with the hopes that I would make it to the top five. I knew there were going to be 26 other amazing women and there was a good chance I would not make the top five. Of course I dreamed of taking the crown home because that would have been a first for Tennessee. I am sure each of the other girls had the same dream. 

(Top Five)

As the week progressed and I learned more and more about each girl, I began to wonder if I would even make the top 5. Each girl came with her own unique physical struggle that she had successfully triumphed and some girls had overcome even so much more than that. 

I often wondered if even belonged in the same ranks as some of these girls. So accomplished, so strong, so independent, so determined to make the world a better place for those with disabilities. I was just a small town girl from Tennessee with the desire to sprinkle a little bliss around the country. My life didn't tragically change in the blink of an eye. I don't experience any chronic daily pain like some of the girls. I am just weak; no pain and no tragic loss. 

I have said many times I feel like I hit the lottery when it comes to having a disability. I now know what to expect in the future and I have time to prepare. My weakness is a slow gradual process that will continue as I age. I have time to adjust to these changes as they don't happen over night. And I know there is a foundation that is solely searching day and night for a cure. I have no doubt they will find something in the very near future to help me. I have high hopes that my weakness will not progress much further due to the advancements in science.  (Now back to the blog.....I got a little side tracked.)

Each one of us will return home to continue representing our wonderful states. I am only 4 months into my year as Ms Wheelchair Tennessee. Y'all know what all I have done in those 4 months. I can't imagine what the next 8 months will hold!!  

I can honestly say that this has been one of the best weeks of my life. I would not change a moment of it.  I know I'm a winner because I had the love and support of each one of you reading this blog.  Y'all have been the best cheerleaders a girl could ask for. 

Thank you so much.

MWA-Friday

Day 5 
July 20, 2013

I was up earlier than normal this morning. At 5:30, the alarm was the last thing I wanted to hear!!  I had a lot to accomplish today!!  I still needed to meet all the other girls. 

Our breakfast gift was an adorable boot glass, a bottle of Dr. Pepper, and a note explaining the history of how it came to be. Texas has been such an incredible host state and why won't they? Everything is bigger and better in Texas!! Many thanks to all the Texas peeps who have worked so hard to make this such a memorable experience. This southern girl really appreciates it. 

I had what I feel was my best (and also my last) round of judges interviews right after breakfast. I know that regardless of the outcome tomorrow night, I was myself and always will be. 

We had four more sessions covering Advocacy and Communication, Public Relations, Disability Policy, and Legislative Advocacy. All of the sessions will help me be a better titleholder for Tennessee when I return home. 

During lunch, I was pulled out to give an interview for a television show filmed here in Houston called Mirror, Mirror. I will post the details of when the show will air when I have them. It is televised but will also be found online. 

After lunch, we attended a mini disability expo. It was nice to have one on one time to talk with the vendors and try out some of the equipment they brought. I was able to thank Todd Novack the Houston Permobil rep again for providing me with a power chair to use during my week. He is an absolute sweetheart!! I meet Annie Kennedy who is with the MDA. We have a mutual friend. I think the world just gets smaller every day!! 

I had to cut the expo short so I could make it to my hair appointment at 2:15. Volunteer hairdressers where brought in to fix our hair for both nights of the pageant. News channel 2 interviewed me while I was getting my hair done. And it turned out quite fabulous. 

Annabelle was due to arrive soon with Mamaw (my grandmother) and Kathy (my mother-in-law) at any time so we headed to the room to wait on them. I couldn't wait to see her!!  It has been a long busy week without her but she has always been in the front of my mind. There was a knock at the door and I thought for sure it was my baby. It wasn't my baby but it was a delivery man with an absolutely beautiful bouquet of flowers for me!!! 

After the hype and excited of the flowers died down, there was another knock on the door. This time I was for sure it was Annabelle...and it was.....with a surprise visitor!!!!  My sister!!  I was so excited she was able to make it!!  She is the reason I am here today!!  

Now once all that excitement was over, it was time to get pageant ready. Mom and Michelle helped me get into my dress and shoes. Annabelle was on the hotel phone. She is too stinking cute!!  We taught her to say room service. So she would pick up the phone and say hello??  Room service??  Hello?  Lol!!!

Dress rehearsal was simple because of the wonderful volunteers and Angela's planning. Everyone was giddy and ready to get the evening going. 

After dress rehearsals we all headed up for dinner. I'm not sure any of us girls at much. Our minds were else where. 

After dinner it was show time!!  There was some time to mingle and take pictures before the show started. 

It was time to line up. Thank goodness the platform speeches were given in reverse order. I got to get mine out of the way early!!  Yay!!  

Each and every girl did AMAZING!!  We all gave a piece of our heart and soul to the audience. There aren't many people that can do that. I hope everyone is proud of theirselves because they should be!!  I wish we could all go home Ms Wheelchair America 2014!!  Could you imagine 27 of us rolling around the country with our huge crowns?!?!