Category Archives: Blog

 

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!

 

 

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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 Works, Tycon 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.

 

 

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.

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

Introducing: “Caregiver Chat”, a Place for Family and Friends

January 3, 2017
Richmond,Va- The United Spinal Association of Virginia is excited to kickoff their second calendar year by implementing a key component to the Peer and Family Mentoring Program: “Caregiver Chat”. The Caregiver Chat will be a monthly meeting time, specifically for parents, siblings, children, friends, and/or anyone who has an SCI loved one. Topics for discussion will be generated by those seeking answers, tips, or simply empathetic ears from those who have dealt with, or are dealing with, similar issues. Things are going well at home? Caregiver Chat is as much a place to share positivity as well. The group get together can also serve as your place to lay out what you would like to see from the organization as active members. Caregiver Chat is a space for you to talk about what you would like to, amongst folks who can understand some aspects of your life, better than most.

United Spinal is extremely fortunate to have the support of our community partners and caring individuals in order to give caregivers a unique space. The monthly meetings will take place at 6pm every 3rd Wednesday at Sheltering Arms’ Bon Air location. Julie Bivins has been gracious enough to donate her time and interest to facilitate meaningful discussion. Mrs. Bivins is the social worker assigned to the inpatient rehabilitation spinal cord injury team at VCU Health Systems, and brings a wealth of experience in facilitating group discussions that serve to give each topic, brought to the group, fair focus.

So without further a do, we look forward to seeing you at the inaugural Caregiver Chat!…

What: Caregiver Chat

Where: Sheltering Arms Rehabilitation-Bon Air…206 Twinridge Ln. Richmond, Va 23235

When: Wednesday January 18th 6pm-7:30pm (Every 3rd Wednesday to follow)

United Spinal of Va Hits the Beach

On August 13th, United Spinal Association of Virginia members descended on Virginia Beach to participate in the 8th Annual They Will Surf Again adaptive surfing event. The event was organized by Life Rolls On, a non-profit based out of California, founded by Jesse Billauer.

Over 100 surfers, of many disabilities, were joined by 300 volunteers. Each of the surfers has an incredible story to tell, and three of USAofVa’s members added momentous days as they entered the water for the first time since their injuries that resulted from water leisure. It was an emotional and joyous occasion for many.

USAofVa supplemented Life Rolls On’s event by greeting SCI’s at their tent, providing power beach chairs for folks to test drive in the sand (thanks to James Howard), and by hosting a lunch in a hospitality suite that provided some reprieve from the soaring temperatures outside.

The weekend was a wonderful occasion for fellowship and fun for many members and their families.

Keep an eye out for details on They Will Surf Again 2017 presented by Life Rolls On!

 

USAofVa Participates in 5th Annual Roll on Capitol Hill

United Spinal Association of Virginia was thrilled to have the opportunity to have representatives descend on Washington D.C. June 26th for the 5th annual Roll on Capitol Hill, sponsored by the national United Spinal organization. The 4 day event was attended for the second time by USAofVa Executive Director Sharon Drennan, first time attendee Dep. Dir. Richard Bagby, and repeat attendee Bill Furtig. They joined over 150 advocates from 38 states to bring awareness to pertinent legislation to the disabled community (which is detailed here)

The Virginia contingency was welcomed to the offices of all senators and congressmen representing the Commonwealth of Virginia, wherein many subjects were lobbied for.image

The following is a detailed recap of the event from the national organization:

Over 150 wheelchair users, clinicians, partners and disability advocates from 33 states, plus Puerto Rico and the District of Columbia, gathered in Washington, D.C. on June 26-29 for our 5th Annual Roll on Capitol Hill to discuss improving disability policies with key congressional leaders.

Roll on Capitol Hill is United Spinal’s annual signature policy event that highlights advocacy priorities for its membership and the broader disability community to ensure wheelchair users and all people with disabilities are included in policy debates impacting their own health, independence, and quality of life.

“I’m delighted to welcome new and returning advocates, and look forward to what the future will bring for United Spinal and for people with SCI/D, veterans and the disability community at large. We look forward to continuing to work with all of you to build upon our many years of service to improve the civil rights and independence of our community,” said David Cooper, United Spinal’s Chairman of the Board who is a wheelchair user and military veteran.

“This is our fifth year hosting Roll on Capitol Hill and every year it gets better thanks to support from our sponsors. We appreciate their commitment to our mission and the work of our advocates to improve the rights of people with disabilities,” said James Weisman, United Spinal Association’s president and CEO.

During Roll on Capitol Hill, attendees took part in over 200 congressional office visits, meeting face-to-face with their representatives and other key legislators to personally discuss their unique challenges living with a disability and the need for:

access to customized rehab technology, prescription drugs, and medical supplies
home and community-based services and supports so that individuals can live and participate in their communities;
accurate incidence and prevalence data for individuals living with spinal cord injury and other conditions;
minimum standards of safety and quality for adaptive equipment at the VA;
funding of home modifications and adaptations for all categories of disabled veterans;
funding, grants and tax credits for veteran homebuyers.
On June 27, Roll on Capitol Hill attendees participated in a full day of policy briefings from advocates, agency officials and former Capitol Hill staffers.

The day began with Keynote Speaker Maria Town, Associate Director for the Office of Public Engagement, Executive Office of the President.

“The work I do would not be possible without the leadership of United Spinal and support from all the advocates at Roll on Capitol Hill. Thank you for all your advocacy efforts this week and the continued advocacy you will pursue once you leave DC. Hearing from all of you helps to ensure the White House is doing more to benefit the disability community,” Town said.

On the evening of June 28, United Spinal hosted a Congressional Awards Reception to recognize members of Congress for their outstanding service to people with disabilities and veterans, including:

The Honorable Johnny Isakson (R-GA) and The Honorable Mark Kirk (R-IL) were honored with the Junius A. Kellogg Outstanding Congressional Leadership Award for their vocal support of disability and veterans issues.
The Honorable Mazie Hirono (D-HI) was honored with the VetsFirst Congressional Bronze Star Award for her efforts to increase opportunities for veterans living with disabilities and to help them reintegrate into their communities.
The Honorable Charles Schumer (D-NY) was honored with the James J. Peters Disability Rights Champion Award for his extensive leadership for the disability community
United Spinal also honored consumer advocate Stephanie Woodward, Esq. who received the 2016 Finn Buller’s Advocate of the Year Award for her dedicated work to ensure the full integration, independence, and civil rights of people with disabilities.

“It’s truly an honor to receive the Finn Bullers Advocate of the Year Award, not only because Finn was an incredible advocate, but because his life embodies the very reason the Disability Integration Act was written – to keep disabled people out of institutions and in the community. It’s heartbreaking to know that such a great advocate was forced into an institution and died there when he should have been living in freedom. I’m proud to receive this award named for Finn and I will continue to fight for the Disability Integration Act so that all people with disabilities can live in freedom,” Woodward said.

For more information about the public policies that United Spinal addresses at Roll on Capitol Hill and throughout the year.

United Spinal gratefully acknowledges our Roll on Capitol Hill sponsors for their support of our members and advocates in making a positive difference in the lives of thousands of individuals living with disabilities.