Sunday, December 4, 2016

A Day at Rhino Scoliosis Center - Denver, CO


I'm in a great rehab based scoliosis treatment program with Dr. Nick Weddle at ScoliosisKC. While on vacation in Colorado I didn't want to miss treatment, so visited Dr. Jane Leavell at "RHINO SCOLIOSIS CENTER". Here's a short video of my visit.  It was an awesome experience!


    Here's a video from RHINO Scoliosis Center showing some great patient results.






Tuesday, October 25, 2016

Scoliosis Activity Suit - A Weapon of Warfare in the Scoliosis Fight!

Scoliosis Activity Suit - A Weapon of Warfare in the Scoliosis Fight!


This weekend I had the opportunity to learn about the Scoliosis Activity Suit from the ScoliSMART doctors, so wanted to share my experience and some of the things I learned.

Being a scoliosis patient myself I was very interested to absorb as much information as possible.

I learned that the Scoliosis Activity Suit will be available for purchase for adults (ages 18 and older) in multiple locations throughout the United States very soon.  Patients will be able to locate a fitting center, send the doctor an x-ray (taken within the last 5 years), travel to the fitting center for measurements/x-ray, and order the suit for home delivery.  Here’s the link to sign up and receive a notification when the site is online – http://adultscoliosisrelief.com

Dr. Nick Weddle, myself, Dr. Clayton Stitzel

I got to practice measuring Dr. Clayton Stitzel and my doctor Nick Weddle for the suit.  It was pretty fun being in the doctors' shoes for a moment while they became my patients. I placed the suit on Dr. Nick Weddle.  I think I did a pretty good job, right!


It only lasted a moment then I became the patient again. I tried on the suit and walked around a bit. I loved how it fit and how it felt during wear.  One of my favorite things about the suit is that you can wear it while doing life; reaping the benefits of the suit while doing normal daily activities. Here’s a picture of me in the suit – of course sporting my “SCOLIOSIS WARRIOR” pose.  I had to represent!
                  Scoliosis Warrior: Become one at - www.facebook.com/groups/ScoliosisWarriors

Before meeting with the doctors to learn more about the suit I read through Dr. Mark Morningstar’s Scoliosis Activity Suit Study multiple times to get a good understanding of how the suit works and the results patients have experienced from using it.  If you haven’t read it, I highly recommend checking it out – https://cdn.treatingscoliosis.com/images/research/2013-1291_suit.pdf


62 patients were in the 1 year study (26 skeletally immature AIS patients and 36 adult degenerative scoliosis patients).


Here’s just a few results that I thought were great in regards to the adult portion of the study:

·         Self-rated improvements in pain and daily function were observed in all adult patient curve patterns.

·         14 of the 36 adult patients saw their curves decrease more than 6 degrees (39% of adult patients)!

There’s more great results to read about in the study.  These two results jumped out to me because many scoliosis patients deal with pain.  I did before treatment, so I think it’s fantastic that all of the adults reported improvement.  Next, through the years I visited several doctors in search of treatment and was told that it was best to live with my moderate scoliosis.  From 2010 to 2014 my curve increased 7 degrees to 42.5°.  I was so afraid of what the future held until I found a rehab based treatment and now the fear is gone.  Many of us patients had no way of fighting this condition before – WE DO NOW!  So, I LOVE that 39% of the adults achieved correction above 6 degrees. 




Some confuse the Scoliosis Activity Suit with a brace, but there is a difference. Here’s what I learned.  A brace is intended to force the spine into a corrected position and acts as a barrier to keep the spine in a corrected position while the brace is worn.  According to the ScoliSMART doctors, “The activity suit uses active resistance and your own body’s motion to help the spine return to a more neutral and straight position.  Each time you take a step the suit activates muscles in your spine which helps to reprogram muscle firing and coordination of muscles.  By triggering a response every time you take a step, your scoliosis and posture will improve and become more functional and stable.”


Another thing I LOVE ---- for these doctors this isn’t just a job, it’s a PASSION!  Their dedication to this work, finding a better way, and to helping patients overcome this condition is very evident.  Dr. Brian Dovorany held back tears as he discussed this treatment and the impact it’s made in patients’ lives.  Of course I started crying when thanking him for the work he’s doing to change the lives of scoliosis patients.  I tend to get emotional when thinking about how some patients will not have to experience the physical and emotional pain that I experienced because of the work these doctors are doing. 


Dr. Brian Dovorany

You may be interested to know that the Scoliosis Activity Suit can be worn by adults all day every day, but the patient needs to be weight bearing (standing upright) in order for the suit to do its job – to provide a corrective anti-rotational effect.  The suit can be worn over or under clothing and it works with fused and non-fused patients.  In the study the overall goal was to wear it 4-6 hours each day.

The suit is composed of 4 separate pieces: the Anchor which is wrapped around the thigh, the Lumbar which attaches to the anchor, The Torso which resembles a half-tank top, and The Tension Straps which connect the first 3 pieces in a rotational pattern, and according to the SAS study, “it introduces a variable amount of rotational force into the patient, to which he or she must react.”

Here’s a few pictures taken while learning to put on the suit. 


Thank you to the ScoliSMART docs for the education (Dr. Mark Morningstar, Dr. Clayton Stitzel, Dr. Brian Dovorany, and Dr. Aatif Siddiqui “Dr. Sid”) and to Dr. Nick Weddle for allowing me to join him for this learning opportunity.


Written by: Marce Kuhns


Tuesday, September 27, 2016

Never give up HOPE! My AGT Experience Video Blog (Scoliosis Awareness)


Things may seem hopeless sometimes,
but in a moment everything can change!!

1 1/2 years ago I NEVER would have done this!   I never would have been brave enough to talk about my condition.  The word scoliosis was never spoken from my lips unless someone asked why I wore hoodies all of the time, or asked what was wrong with my back, ect.... I cried anytime that happened, so everyday I worked hard to cover my back with loose fitting clothing.  The doctors I seen said there wasn't any treatment options for me as an adult with moderate scoliosis.  I was told it was best to just live with it.  I was living a life with no hope; no treatment options!  Then 1 1/2 years ago my life changed when I found a new non-surgical treatment.  Now I'm talking about scoliosis all of the time, sharing my story of hope with others -- I even sported my scoliosis awareness sash during the America's Got Talent auditions and ended up in a few clips on the show, wearing a dress that I never would have worn before treatment.  My point is this!  No matter how hopeless you feel - things can change!  You never know what can happen to change the course of your life. All it takes is one day, one moment!  NEVER give up HOPE!!  It's overwhelming to think how much my life has changed - I'm so very thankful.  If anyone is interested in seeing the video I made about my experience at the AGT auditions and the clips I was in, you can check it out below.  Marce♥♥









Sunday, September 11, 2016

SCOLIOSIS: One of 52 doctors in the WORLD providing a specialized non-surgical treatment for Scoliosis - located in KANSAS CITY.



One of 52 Doctors in the World Providing a Specialized Non-Surgical, Non-Bracing Treatment for SCOLIOSIS – Located in KC!

Dr. Nick Weddle opened the doors of hope with a new option for scoliosis treatment in Kansas City.  This treatment is unique, it’s a non-surgical and non-bracing treatment that helps maintain and correct curvature. For many years the standard care for scoliosis treatment has been bracing and surgery.  Bracing is used as an attempt to stop the progression of a curve in growing youth, while surgery is recommended for those with a severe curvature. These two treatment options leave little hope for patients who have reached skeletal maturity and have mild to moderate scoliosis.

According to Dr. Nick Weddle, “Many patients are still told that their only options are bracing and surgery.  Most people are basically told they just have to live with it unless it gets big enough for surgery, where they fuse metal rods to your spine.”  Thankfully, this is no longer the case.

In the summer of 2015, Dr. Weddle received national recognition by becoming one of 52 doctors in the world to be certified in the CLEAR non-surgical treatment for scoliosis.

He says, “This process has taken me several years to complete, and has changed the treatment options for the 18,000+ people suffering with scoliosis in the KC area, and even the Midwest too.”

I am a patient whose hope was restored!  Throughout the years I visited multiple doctors in search of treatment, in search of help, but found none.  As an adult my curve reached 42.5 degrees - causing pain, limitations, insecurity, fear, and a noticeable deformity in my back.  I desperately wanted to do something to improve my condition, but I couldn’t locate any treatment options for an adult with moderate scoliosis.  I felt helpless and had much anxiety about how this condition would continue to affect me through time --- and then I found Dr. Nick!

The physical pain, emotional scars, fear, and self-consciousness are gone!  It's hard to believe after years of laboriously working to hide the postural deformity in my back (and being told there was nothing I could do about it) - that I’ve arrived here in this place. Today I stand in this place - the same girl, but with a different reflection; a woman who has made a statement to Hide No More and remain confident while continuing to strive for correction.  I'm so happy with the physical and visual changes that I've experienced, and so very thankful for this treatment!
I put this short video together to tell my story of hope --- may it deliver hope to others.   It includes a few pictures to show how this treatment has changed my world.   



If you're interested in learning more about this treatment: ScoliosisKC

Thanks for visiting!♥


Subscribing to blog from your phone:  Click on "View web version" at the bottom of the blog and submit your email address at the top of the screen.

Sharing my journey at www.facebook.com/thecrookedlife



















Sunday, September 4, 2016

Scoliosis - Learning the Lingo (Crossword Puzzle)



Scoliosis - Learning the Lingo

Having a conversation with your doctor about scoliosis can be a bit overwhelming (especially in the beginning) until becoming familiar with the lingo.  

I think it's important to understand our condition, not only to communicate with the doctor, but to be actively involved in our care to help us make the best decisions regarding our health and treatment.  So, I've been learning some terms.  I think it's easier to learn when it's fun, so put together this crossword; it helps me retain the information. 

I'm passing it along in case anyone else finds it helpful. I created some guides to help as well.  You can scroll to the bottom for the answer key. In addition, I've included an infographic provided by ScoliSMART with some great information.  Have Fun Learning!

If you prefer to do the crossword digitally instead of printing - click below:
DIGITAL VERSION


SCOLIOSIS CROSSWORD - LEARNING THE LINGO



Guides to Help Complete Crossword






Scroll Down for the Answers:


Answer Key:


Thanks for visiting!♥

Subscribing to blog from your phone:  Click on "View web version" at the bottom of the blog and submit your email address at the top of the screen.

Sharing my journey at www.facebook.com/thecrookedlife

Here's an infographic provided by ScoliSMART that you may find helpful.

Sunday, June 26, 2016

Warrior Music Video - Scoliosis Awareness Month Project

With many tears of excitement today I introduce to you my new and VERY SPECIAL PROJECT: 
"WARRIOR" - Song & Music Video! 🎸 

I believe almost anyone fighting a battle will be able to relate to this song.  For me it tells the story of my battle with scoliosis; the transformation from hiding and being extremely self conscience before treatment 💔 to becoming a confident Warrior today!

The song is on iTunes, Apple Music, Spotify, YouTube, Amazon Music, and more with proceeds being donated for SCOLIOSIS TREATMENT scholarship(s). Can find it under - Marce Kuhns  Warrior.  

I just hope you enjoy the song and video - If so, feel free to share. 

We Are Warriors!  We Fight - We Are Strong!  WE WILL NEVER KNOW DEFEAT!  ðŸ’ªðŸ’ª

Scoliosis Journey: www.facebook.com/thecrookedlife




Living with Scoliosis: Telling the Emotional Story

This is a great infographic provided by ScoliSMART.


Thursday, May 26, 2016

10 Ideas to Spread Awareness



10 Ideas to Spread Awareness


Scoliosis Awareness month is in June, so I put together a few ideas to spread awareness.  I hope these ideas help you in your quest to spread the word, inspire, and share awareness.
 
1.       Create your own T-shirt.  Ignite your creative juices and rock awareness by designing your own T-shirt.  I created mine on www.uberprints.com.  You can even individualize it by adding a picture of your x-ray to the back of the shirt.  It’s one way to initiate questions.
Here’s a few pics of shirts I’ve designed:



Says: The Crooked Life - Crooked for years, but trying to straighten up!

Part of my x-ray on the back

Or, there’s also a t-shirt fundraising campaign happening right now (thru June 7th, 2016) for Scoliosis Awareness with the proceeds benefiting the International Chiropractic Scoliosis Board. I ordered mine. You can copy and paste the link below to see the design or submit an order. https://www.bonfirefunds.com/scoliosis-awareness-campaign

2.       Creative/Themed Snacks -   Share awareness at work or with friends by sharing creative food inspired by your cause.  For Scoliosis Awareness you could create a skeleton veggie tray with a crooked spine to share with family/friends.  I found this idea online and altered it by creating a crooked spine.  You could purchase snacks that are curved or twisted.  You could create a framed outline of your story to place near the snacks.





3.       Create a video of your story to share.  Could you use a creative spark, here is a video I put   together about my story that might help ignite a few ideas.




4.       Have a themed party or gathering.  Share something useful for the guests, while they also learn about your cause.  For example, I’m in an exercise based treatment program working hard to achieve the best possible results.  When the day comes I’ll be having a huge celebration – I’ve already decided on my theme: “Straight Up!” Yes, like the Paula Abdul song.  I plan on adding a spine to the stem of the glasses, themed food, video highlights of my journey, and themed music.  But for now, I’m “Straight Up” working my butt off towards accomplishing my goal. 

5.   Make a Statement!  I hid for over 20 years behind baggy clothing until I found an exercised based treatment program that gave me hope, and has changed my life in more ways than one.  My confidence has been restored not only by the improved appearance of my back, but also through the healing of the emotional scars I suffered throughout the years.  Through my treatment I became brave enough to make a statement and do the thing that I’ve always feared the most – exposing my back.  I had my back painted to make a statement, as well as a promise to myself – I Will Hide No More!


About 7 months into treatment

6.       Use your story for a school presentation or project.  Have to give a speech, or write a paper for a school project?  Use it to tell your story or provide education about your cause.

7.       Use your talent to spread awareness.  Are you good at art, poetry, dance, ECT…? Use your talent to express yourself; maybe you can find a contest to enter your creative work, or a public setting to display your work.  I’ve been working on my project for the last few months and can’t wait until it’s finally completed! 

8.       Share inspirational messages/pictures through social media.  Others experience the same thoughts and emotions as you do.  Create photos with inspirational messages, and creative selfies to inspire and uplift others.  Below are a few examples I’ve put together.  If you aren’t up for creating your own, you’re welcome to share any of these (link at the bottom of the page).





9.       Share Appreciation.  Spread awareness by shining a light on others doing awesome work associated with your cause.

10.   Increase your knowledge and share it with others.  For scoliosis awareness you can share infographics located at – www.treatingscoliosis.com/infographics/. You’ll find information about Back Pack Safety, Scoliosis Screening, Scoliosis Fusion Surgery, and Scoliosis Awareness Month. I’ve included the one about Scoliosis Awareness below.


 I’d love to hear some of your ideas, or if you use any of these ideas - I’d love to know how it went.
Sharing my journey at: www.facebook.com/thecrookedlife

Saturday, April 9, 2016

The NIGHTMARE Before Treatment!

 
  
There are certain scenarios that are NIGHTMARES for many of us with scoliosis!  These things unite us, connect us, and help us know that we're not alone.
 
Growing up, none of my friends had scoliosis.  I was too embarrassed to talk about what I was going through. I was afraid of what others would think.  So, I hid for a LONG time, until about a year ago. That's when I found an exercise based treatment program specifically designed for scoliosis and as a result many of my NIGHTMARES were transformed into DREAMS.   Here I am today extremely thankful and changed, but one thing is for sure - I'll NEVER forget the NIGHTMARES!!  Even though mine have disappeared, for others it is still very much a reality and my heart feels it!  I wish I had an answer - an answer to make everyone's pain go away.  What I do have is HOPE, and I'll spread it around by sharing my NIGHTMARES and how I escaped them!   So, here it is--------My NIGHTMARE before Treatment!
 
(Note: These are not listed in any particular order - they all just suck!☺☺)
 
 
#1)  
 
All of us have to make our way to the salon at some point, unless you have the (too risky for me) flowbee haircutting system, a professional hair stylist in the family, or you're one of the brave and talented who can cut your own hair. Some people get nervous while sitting in a dentist chair, for me it was definitely a salon chair. What I always hated about salon visits was this - no matter how much work I put into concealing my back, that cape exposed my uneven shoulders every time!  I would try my hardest to sit up straight in hopes that the stylist wouldn't notice, but I don't think it helped.  A few times stylists questioned the position in which I was sitting while trying to get an even cut.    I didn't want anyone to notice or ask questions, so this was always a nerve-racking experience. 
 

 #2)
 
 
 
Oh my goodness - every time I showed up for an event and saw this type of seating I was mortified.  First of all, there's absolutely no back to these ridiculous seats.  Because there is no back, I felt exposed and very uncomfortable.  I tried to sit up straight so that those behind me wouldn't notice my rib hump, but it was painful and I don't think it helped much.  When possible I would sit on the cold concrete step and lean my back against the seat of the bleacher; other times my husband would wrap his arms around me and I'd lean on him for support.  Regardless, I knew I was in for a long, uncomfortable, and painful few hours.
 
 
#3)
 
 
I avoided every situation that required me to bend over in public!  Bending forward revealed my rib hump big time!  The picture above was recently taken for this blog, so doesn't demonstrate what my rib hump was like before treatment.  I was always so careful and tried planning ahead, but was totally caught off guard when signing up for a college karate class.  Class began and the teacher had us stand in rows (I was in the middle of the group) and led us through stretches.  I had to bend over with people behind me ---- it might not seem like a big deal to some people, but I was absolutely horrified -- FREAKING OUT!  Then I had a realization that I would have to repeat this every week for an entire semester!!  I devised a plan fast!  I purchased several men's oversized t-shirts and strategically began placing myself in the last row of class so no one was behind me.  It was a job, but I made it through the semester.  Here's a picture showing my rib hump before treatment and what my back looks like now  -- LIFE CHANGING!!!!!!

 

#4)
 
 
Before treatment I experienced pain surrounding my right shoulder blade.  During chores I would often have to stop after awhile because of the pain.  It limited me, and I'm not a person who likes limits!! Often times I'd end up on the couch wrapped around a heating pad for the remainder of the day with severe pain.  Recently, I was on vacation and painted my kitchen/dining room.  I'd been painting for about 9 hours when it hit me ---- I didn't have any pain.  That was an exciting moment! 


#5)
 


My activities were limited by pain and/or self-consciousness.  I love adventure and experiencing new things, so would often push through the pain and regret it later. Sometimes I'd decline invitations for activities that I thought would expose my back.  Maybe I should have purchased a shirt like my dad owns that says, "I have a million excuses, which one do you want to hear today?" (LOL)!  Now ---- this is a NON-ISSUE!


#6)
 


Shopping - was awful!!!!  I love shopping, but finding clothes to fit properly and conceal my rib hump was an absolute NIGHTMARE!  Most clothes made me feel awful.  I'd try piles of clothes on, but many times left with nothing.  I often settled for clothes because of the way they fit not because I liked them.  It was emotionally exhausting and depressing!  Shopping online - I couldn't do that either! Many times the back of a shirt isn't pictured, so it's hard to judge how it will fit.

My shopping trips are much happier these days - the picture above is of a dress I recently purchased that I never would have worn before.  In the past my rib hump would have been very evident in this dress, but today it's barely noticeable.  See pictures below of me in this form fitting dress today.




#7)
 
 
The beach is one of my favorite places, but for someone hiding their back - it can be a scary place!  I wouldn't wear a swim suit.  I was never able to find a swimsuit to cover up the deformity in my back.  I tried which required hours upon hours of searching, but it didn't happen.  I went to Hawaii once and found a swim suit that I thought I'd be brave enough to wear---two years later it still had the tags attached.  I'd wear a sports top and shorts.

Last summer I wore the swimsuit I bought for Hawaii for the first time.  It was such a wonderful feeling of freedom!  This year I'll be shopping for a swimsuit for the first time with excitement, instead of dread! 


#8)
 

I hated when people were behind me. I was afraid they were staring at my back and wondering what was wrong with me. This stemmed from a situation that happened years before. 
Someone I knew began balling her eyes out – tears were flowing heavily down her cheeks.  As she sobbed, she leaned forward and asked me the dreaded question, “What is wrong with your back?” I wanted to shrink down and disappear!  I could feel every shade of embarrassment displayed on my face, but all I could do was sit there while she continued crying.  Until that moment I had never looked at my back in the mirror.  I wasn’t aware of the horrible gift that time had delivered, but that day I went home and looked.   I knew I had scoliosis, but this was the first time I became “aware” of it – and every day from that day on - I was aware of it!
 
#9)
  
I didn't mind photos as long as they weren't of my back or my profile from the right side.  Any pictures in my possession like that were shredded and tossed because they made me feel bad about myself.  I got to a point that I vowed to get rid of anything that made me feel bad; I was just SO tired of feeling that way.  I took one picture of my back many years ago that I referenced during prayer (the tears just started flowing while thinking about this).  I prayed for so long for a miracle, a new treatment, something, but as the years went by it got harder to believe and I tore it up.  "AND THEN" 27 years after my diagnosis I got an answer - a new treatment opened in my area.  Thinking back I believe my prayer was answered long ago when I first prayed.  I believe individuals were chosen to change the face of scoliosis treatment and many patients lives.  The ones chosen were in school learning and developing at that time, and I had to wait for them to prepare for this adventure - "Their Calling". Sometimes I wonder why I had to go through everything that I did and here's what I conclude -  It's the ones that have gone through the struggle that are most often used to help others through it.   That's my perspective on that!☺☺ 
 
#10)
 
 
 
Having to change clothes in front of peers or strangers distressed me.  I worked hard to wear clothes to hide my back, I sure didn't want to uncover what I was hiding in a locker room full of people. I did what I had to do and turned my back away from everyone. I changed clothes so fast you would have thought I was Supergirl.  I wasn't playing around!! 
 
 
#11)
 
 
My ultimate goal every single day was to fool everyone around me and myself - which involved carefully selecting an outfit each day, putting it on, staring in a full length mirror backwards through another mirror, and viewing my profile in every direction to make sure no one could see my protruding shoulder. I never left the house without checking my profile in every direction to make sure my rib hump was concealed.   This was a source of many tears.  It was so hard!! The only way I could walk out the door confident was feeling like my back was hidden. I did not want people staring at me, or asking me questions.  I didn't want anyone to know.  I was constantly on guard.  If I sensed that anyone could tell I would breakdown.  
 
 
In Conclusion:
 
I was looking for help and I finally found it!
 
Thanks for reading about my NIGHTMARES.  I mentioned earlier that many of my nightmares have been transformed into dreams.  My life has truly been completely changed! I'm extremely "OVER THE TOP" thankful for the difference.  I desire for others to have this same experience.  I dream of helping others do that.  There is hope to be found --- I've experienced it! 
 
I'm still working hard to achieve the best results possible.  I post updates about my journey at www.facebook.com/thecrookedlife
 
Have a GREAT day!!




Locker Room Picture: https://creativecommons.org/licenses/by/2.0
Jack Skellington Picture: http://creativecommons.org/licenses/by/3.0