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USAofVa Member, Vicki Varner, Crowned Ms. Wheelchair Virginia

On January 19th, 2019, United Spinal Association of Va member Vicki Varner competed in the Ms. Wheelchair Virginia pageant at Wilson Rehab in Fishersville, Va. At the conclusion of the weekend, Miss Varner rolled away with a new crown and title: Ms. Wheelchair Virginia. We invite you to take in Vicki’s journey from softball player, to pageant winner, and beyond…in her own words. Congratulations Vicki!

My Journey to Ms. Wheelchair Va

Vicki Varner

On Christmas Eve of 2015, my brother’s blue Ford Focus rode off into the night surrounded by heavy fog and crashed into an unforgiving tree just about five miles away from home. As blue flashing lights drove towards our car turned accordion, I looked down at my Christmas pajamas splattered in blood and knew that the legs that had taken me to Missouri on an athletic scholarship just 4 months prior were now paralyzed. On Christmas morning, I was told from my father and the doctor that I would never walk again. As my dad told me this news, I felt the hand that had always lifted me up in strength go weak. What do you do in a moment like that? Many would tell you that you don’t have any option but to “just” accept it. I am here to tell you that in life changing situations, YOU have the ability to decide how that unforeseen moment is going to shape the rest of your life. Sure, it is great to accept it, but it is even better to grow from it, to thrive. I decided that I absolutely had to turn this around somehow. I had to breathe strength and reassurance into not only myself, but to those people who have breathed that same strength into me. Through my couple of weeks in the ICU, I began to realize that I was lucky. Yes, you read that correctly, lucky. I was alive! My brother and boyfriend had survived the wreck and I had my arms, my mind, my spirit, and my sense of humor. I had so much opportunity to chase and so much gratitude to express. So, I chose to pick myself up off the cold floor and rise into the phoenix I am today.

The next few years would consist with very high highs and very low lows. I found myself in the hospital every couple of months within that first year and a half after injury. I was set in the belief that I could still live my life the exact same way that I did prior to my spinal cord injury, but have since learned that minor alterations were needed to live that life successfully and most importantly healthily. Those couple of years took a toll on me not only physically but mentally as well. I was terrified that this is what my life had become now and struggled to see that light at the end of the tunnel. It is easy for  me to talk about the accident, but I find difficulty in talking about what happened as an after effect. Those of us who have been through trauma are usually surrounded by the love and support when the incident first occurs, but as the months go on there are less and less people in our corner. You have to dig deep and be that person who rallies on and fights the bumps that pop up in your journey. When I wheeled over those stubborn bumps in mine I was overwhelmed of all the amazing opportunities of the world and at just 20/21 I was still searching for my purpose of being. I was a fulltime student but I still wasn’t getting that fulfillment that I craved and needed. I knew I was built for more but I just didn’t know where to begin to find it. Then as life always seems to do when you least expect an opportunity fell into my lap.

I found out about the Ms. Wheelchair VA program in December. I am not going to lie at first I was a little apprehensive. I just didn’t think I could make the switch from softball dirt and cleats to pageantry. That is where I was completely wrong and where a lot of people misinterpret the program. Ms. Wheelchair VA  is an advocacy program that gives women the opportunity to educate, advocate, and raise awareness for various issues within the disability community. There is absolutely nothing pageantry about it, just strong women making significant changes. Now that is something I can get behind. I have always had a strong voice and an even stronger mind. Being a Psychology and Communications major I have a solid understanding of how to communicate effectively as well how to relate to many different types of people. I knew that having the title of Ms. Wheelchair VA would require those skill sets and I had been searching for a way to put them to use in a field I have extreme passion for. It seemed like the perfect fit. During the event weekend you are asked to prepare something called the “Table of Life” which is a display that showcases who you are as a person along with your platform. You’re also asked to complete a speech on your platform and memorize it. I had a couple of weeks to get everything  together which made a perfectionist like myself go a little haywire. Everything kept falling into place for me however and it really began to feel like God, fate, or whatever you may believe in was working in my favor. When I got to the event I was immediately blown away. It is extremely empowering to be around strong women from many different rolls over life who are working towards changing the world in the best way. I knew whether I won or lost that I would roll away with an amazing experience and an enhanced perspective and that is exactly what I got.

When I had the honor of winning the title, Ms. Wheelchair VA, I felt the purpose I had been craving rush through my body. I was ready to make a difference and put my platform to life. My platform is breaking down societal ableist beauty standards. I chose this platform, because women already have such high expectations on how they should look, dress, and act. When a wheelchair gets thrown into the mix society doesn’t even know what to do with itself. I plan on speaking to local and statewide ad agencies on adding much more inclusive campaigns.  I also am a very fitness oriented person. Since  athletics was my whole life I continue that into my daily life today. Fitness is even more important when having a disability. It helps with a whole array of issues both mentally and physically. All fitness is geared towards able bodied people and it leaves a lot of people with disabilities in the dark about how to start down their fitness journey. I plan on talking to gyms across the state and educating them on the importance of adaptive equipment and classes. I also plan on speaking at various schools on driving safety and disability etiquette to show that people with disabilities aren’t strange or abnormal, but just normal everyday people who actually have amazing things to offer. Changes start with the youth and I plan on using them to help start the changes necessary. I overall just aim towards a more adaptive and inclusive community and I working hard to achieve that. I am doing several podcasts and speaking engagements to teach the state of Virginia that disabilities are nothing to fear but something to value.

Thank you for your support and for following my journey as Ms. Wheelchair VA. I will be at Nationals in Little Rock in July and I hope the support and loves follows.

Vicki Varner

Ms. Wheelchair VA.

 

Join Us in Raising SCI Awareness
Our community is stronger when it comes together to educate the public on the challenges of living with spinal cord injury (SCI). As we celebrate SCI Awareness Month in September, show your support for our mission and community by raising awareness through your personal and professional networks. Below is content you can share throughout September to help spread awareness. If you share on your social media networks, use hashtags.#UnitedSpinal #WeRollUnited #SCIAwareness. Thank you for your support!

 

 

United Spinal Association Covid-19 Support

4/23/20 Update!

While USA is not currently awarding any new grants at this time, please continue to complete the online form below in order to be notified when more will be granted in about 2 weeks or so. Feel free to contact us with any questions.

United Spinal Association has been awarded a grant from the Craig H Neilsen Foundation which allows our members to apply for Covid-19 Relief Grant of $500 for individuals with SCI/D who are experiencing hardships due to circumstances related to Covid-19.

Click here to read more and to apply for the grant. To learn more about Craig Hart Neilsen, click here.

UNITED SPINAL ASSOCIATION OF VIRGINIA, SPORTABLE CREATE EMERGENCY SUPPORT PROGRAM

 

We sincerely hope this message finds you healthy, happy, and safe! These are definitely trying times for everyone as the most effective defense of COVID-19 continues to be self-isolation from friends and the public in general.  Understanding that these guidelines will be implemented for an indefinite period  of time, and the reality that these policies disproportionately effect individuals in our community, we are working hard to alleviate some of the unique stresses placed on individuals with SCI/D and their families.

This morning, Sportable and USAofVa are announcing that we have joined forces to offer you assistance in the form of an Emergency COVID-19 Relief Program.  We will be sourcing products in high demand (hand sanitizer, gloves, disinfectant wipes, etc.), groceries, medical supplies, and any necessary items that would otherwise require you to break self-isolation to obtain.  Employees and dedicated volunteers will be doingcontact free deliveries.

We are extremely grateful to the Craig H. Nielsen Foundation for affording us the opportunity to further assist our community in adhering to best self-isolation practices and alleviate some of the financial strain this pandemic is causing.

Individuals with SCI should visit Sportable.org where they will find more information about this program, including an online survey that will serve as an application. Requests will be fulfilled on a highest-need basis. For more information about the Emergency Support Program, please contact Wendy Bondeson at [email protected], or call 804-340-2991.

The SCI/D community is the most resilient and adaptive group of people society has seen. We will get through this together. As always, we are stronger united.

 

Link

Sudden Spinal Cord Injuries force many individuals, their families, and friends into a whirlwind in a fraction of a second.  With an average length of stay in inpatient rehabilitation being a mere 3-6 weeks, time is of the essence to organize many objective aspects including accessibility to the ideal place for the individual to return to post-discharge: Home.

For one such family, this was the harsh reality 3 days before Christmas when Liz Hartman, a young mother of 2 with one on the way, faced complete paraplegia due to a motor vehicle accident.  Luckily, United Spinal of Va was able to be present to offer Peer Support and assistance through their newest program, the Ramp Project.

(First USAofVa Ramp Project ramp installation)

Recently, USA of VA was awarded a grant through the Craig H. Nielsen Foundation which makes it possible for individuals living with fresh SCI/D to obtain a wheelchair ramp who would otherwise not be able to afford one comfortably and/or be otherwise forced into institutionalized facilities. To date, USAofVa has been able to coordinate and fund the installation of 7 ramp across the state of Virginia.

“We are incredibly thankful to our community partners, especially the Craig H. Nielsen Foundation, for affording us the opportunity to provide our newest members some ease of mind in knowing that accessibility to the home will be one less thing they will need to worry about, allowing them to focus more on healing and adapting to the new life they are facing. It is my hope to expand on the USAofVa Ramp Project, in the future, so as to ensure that no Virginians living with SCI/D experience hardships when attempting to access their homes.” Richard Bagby, Director, USAofVa.

With the help of our partnering vendors Mobility WorksTycon Medical, and National Seating and Mobility, modular ramps are installed in time for their users to be released from the hospital or rehab, making it possible for them to go home. If you are in need of a ramp for yourself or a loved one, ask your Social Worker for more information about how to apply.  Social Workers and case workers may obtain further information on the Ramp Project by emailing us here.

If you would like to help make more ramp installations possible, please consider contributing to USAofVa. All donations are tax dedictible.

 

 

Our members at annualRoll on Capitol Hill in D.C.

United Spinal Association of Virginia Joins 150+ Advocates for 6th Annual Roll on Capitol Hill

June 15, 2017

Washington D.C.-    Members of United Spinal Association of Va. joined 150+ advocates, from across the United States and Puerto Rico, to participate in the 6th Annual Roll on Capitol Hill June 11th- 15th.  The event was organized by United Spinal’s national organization.  Daniele Joseph, Bill Fertig, Sharon Drennan, and Richard Bagby represented the Virginia chapter in order to garner support from Senators and Representatives in order to enact much needed legislation that protects the fundamental rights and services for disabled Americans, specifically those living with SCI/D.

Sunday evening was the kickoff reception.  Advocates reconnected from past events, and met fresh new faces ready to begin their advocacy on the federal level.  Attendees enjoyed a performance by the Rollettes, a California based adaptive dance company led by Push Girls’ own Chelsie Hill.

UuSAofVa Exec. Dir. Sharon Drennan updates advocates on research progress

Monday, the group participated in a day long conference.  USAofVa Exec. Dir., Sharon Drennan took to the podium to give a comprehensive update on the state of research centered around SCI/D in the United States.  The rest of the day was filled with panels educating the advocates on the position papers they would be advocating for, as well as opposing.  The position papers can be found here.

On Tuesday, the advocates took to “The Hill”, for a jam packed day of lobbying for common sense policy that would improve the lives of the SCI/D community while benefiting the American taxpayer.

USAofVa advocates with Sen. Tim Kaine D-VA

The Virginia contingency met with legislators from the commonwealth, as well as their staffers.  At the conclusion of the day, members of USAofVa participated in a “flash-mob” dance routine to raise awareness for the disability community.

In the end, we had an incredibly successful week lobbying for the SCI/D community, and expect to see some crucial bills passed that will improve the quality of life of disabled Americans, especially those living with SCI/D!

M.D. Minute- Thoughts on Bladder Management

 

Thoughts on bladder management after spinal cord injury.

Dr. William Carter, M.D./MPH 

There are many different ways to manage the bladder after a spinal cord injury. Some people use indwelling catheters, suprapubic catheters, condom catheters, intermittent catheterization, or other more advanced diversion techniques performed by Urological surgeons. The optimal amount of fluid is going to depend on the management strategy for your bladder as well as any potential health issues that you may have. To start off, These recommendations are my opinions, which many other SCI physicians share but not all.  My recommendations are not applicable for those people who have had issues with fluid overload from kidney failure, heart failure, severe liver disease, and a few other exceptions.  With the exception of these conditions which will result in needing to restrict fluids, my general recommendation would be to take in as much fluid as within reason. I will discuss the rationale behind this belief by explaining basic bladder physiology.   Things to be discussed will include bladder volume, stones, bladder cancer. I will try to divide this into those using indwelling devices compared to intermittent catheterization and also make some commentary about those who have lower motor neuron bladders ( flaccid) compared to upper motor neuron.

I think of the bladder is a muscular balloon.  Similar to a balloon, it can be stretched out of shape at which time it has difficulty shrinking back down.  If it is not expanded it will shrink to a very small size. in the setting without medications and without a spinal cord injury the bladder is designed to hold approximately 400 to 500 milliliters at most at which time someone will have a strong urge to urinate.  

For those doing intermittent catheterization:

For those of you who use some form of intermittent catheterization, the typical bladder volume all around 500 milliliters is why 400 to 500 milliliters is considered the goal volume for cathing.  Initially  while an inpatient Rehabilitation you would likely taught to restrict your total daily volume intake to two or two and a half liters per day. The purpose of this was due to the likelihood that you were being catheterized by a nursing staffmember and to try to prevent overdistention of your bladder. And honesty, once you have control over your own intermittent catheterization, you should drink fluids to fit your schedule while trying to maintain bladder volumes less than  or around 500 milliliters. For example, I worked with one person who was doing a lot of outdoor activity in the summer so he was drinking forward to 5 liters per day to maintain his hydration thus doing intermittent catheterization more than 10 times per day to keep his bladder volume down. Drinking extra fluid kept him from becoming dehydrated, but having such high fluid intakes also likely helps to flush bacteria and other particles out of his bladder and thus he very rarely had urinary tract infections as well as very rarely had any form of bladder stones.  This however, requires that he have very clean technique since he’s doing catheterization so often which, if done improperly can lead to infection.  Additionally it requires that he monitor his bladder volume very carefully because there are significant consequences to bladder distention. These consequences include: kickoff- causing bladder accidents,  reflux of urine to the kidneys- which can damage them and increase your risk of kidney failure, and increase in the muscle thickness of the bladder wall- which can increase risk of stone formation.  Therefore, my recommendation is to drink as much fluid as you can tolerate while maintaining catheterization volumes of 500 or less.

For those with indwelling catheters:

Those with indwelling catheters, your bladder consistently has some small amount of urine left over which could serve as a site for infection as well as stone formation. based on this, unless there’s a contraindication my recommendation would be to drink higher volumes of fluid (water),  ideally somewhere around four liters or one gallon per day.

For those with condom catheters:

It is very difficult for me to comment about what is the ideal intervention for those using condom catheters exclusively. Unless your injury is lower motor neuron ( your legs would be flaccid with no spasms),  due to the spastic nature of the bladder, there is risk of damage to the kidneys with voiding.   I’m not sure how to balance this risk with the risks  mentioned above from not drinking enough fluid.

Lower motor neuron injuries:

If you are using intermittent catheterization,  I would follow the same guidelines as others while understanding that your risk of leaking is higher with high volumes.   If using condom catheter or indwelling catheter,  my recommendation would be to drink as much fluid as possible for the reasons mentioned above.

 

William Carter, MD/MPH is a spinal cord injury medicine trained Assistant Professor of physical medicine and rehabilitation at Virginia Commonwealth University