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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.

USAofVa Attends Sportable’s Annual Paralympic Experience Day at VCU’s Siegel Center

On Friday April 15th Sportable, in partnership with VCU’s Center for Sports Leadership, Sportable hosted their annual Paralympic Experience Day.

The event took place at VCU’s Siegel Center and was MC’d by NBC12’s Marc Davis.

Participants, including many USAofVa members, got the chance to try some adaptive sports offered by Sportable including: hand cycling, weightlifting, goal ball, sit volleyball, power soccer, and wheelchair basketball.

The evening culminated with an exhibition wheelchair basketball game featuring the newly crowned NIT National Champion Sportable Spokes v.s. The VCU Rams men’s basketball team. The Rams competed well while adjusting to the adaptive sport, but were no match for the young Spokes. The Spokes took home bragging rights with a 23-13 final score.

The main event had an equally impressive encore. Mark Zupan made a gracious appearance, lending his celebrity to the Paralympic

Mark Zupan, Paralympic Gold Medalist and star of "Murderball"

Mark Zupan, Paralympic Gold Medalist and star of “Murderball”

Experience. Zupan captained the 2008 USA Olympic wheelchair rugby team to gold in Beijing, and is the star of the critically acclaimed documentary “Murderball”. Zupan capped the evening off by speaking to the Spokes and attendees about how his disability has added so many positive things to his life. His ultimate message was to not let disabilities hinder your dreams, you can still accomplish a great deal…just in a different way.

Sportable is hosting another Paralympic Experience Day for those living in the Piedmont region on April 23rd at Wilson Workforce and Rehabilitation Center.

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U.S. Paralympics and IPC Host Roundtable on How Sport Aids Disability Employment

3/10/16-Washington D.C.- The U.S. Paralympics and IPC hosted leaders in disability advocates for a round table discussion and panel. The subject of the talks was how sport has a positive impact on unemployment amongst disabled people.

From www.Paralympic.org:  “Several of the US’s leading disability advocates attended the meeting which was hosted by the IPC and US Paralympics.
A woman with brown hair and glasses speaks to an audience and holds a piece of paper featuring a graphic to illustrate a point. Judith Heumann, Special Advisor for International Disability Rights, Bureau of Democracy, Human Rights and Labour, US Department of State, addresses the IPC/USOC roundtable discussion in Washington© •
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The IPC and US Paralympics hosted several leading US disability advocates at a roundtable discussion in Washington DC, the USA, on Wednesday (9 March) to talk about improving employment opportunities for people with a disability.

Held at the US headquarters of IPC international partner BP, panellists included IPC President Sir Philip Craven, Judith Heumann, Special Advisor for International Disability Rights, Bureau of Democracy, Human Rights and Labour, US Department of State; Jennifer Sheehy, Deputy Assistant Secretary, Office of Disability Employment Policy, US Department of Labour and Cheri Blauwet MD, Chair of the IPC Medical Committee and Instructor in Physical Medicine Rehabilitation/Sports Medicine at Harvard Medical School. Dan Brooke, Chief Marketing Officer of British broadcaster Channel 4, also joined the event via video conference from London, Great Britain.

To kick-off the three-hour panel, Judith Heumann gave a broad perspective on disability rights in the US, covering both historical and current challenges and opportunities, whilst Jennifer Sheehy talked about US employment rates, barriers and interventions for people with a disability.

Three-time Paralympian and seven-time medallist Cheri Blauwet then presented results from a pilot study which revealed that people with a spinal cord injury are 2.4 times more likely to be in employment if they participate in organised sport.

Sir Philip Craven revealed data from a joint IPC/U.S. Paralympics research study into attitudes towards disability and employment in the US. The research revealed:

– One in three Americans think a person with a disability would not be able to do their job.

– 39 per cent believe an employee with a physical disability would get paid less compared to other employees doing the same job, and worrying one in nine people believe less payment would be justified.

– 28 per cent would not hire a person with a disability for a job

Finally, Dan Brooke spoke at length about how the London 2012 Paralympics Games not only transformed attitudes towards people with an impairment in Great Britain but were the broadcaster’s finest hour, changing the way they operated as a socially inclusive business.

Sir Philip Craven said: “The roundtable event was part of our strategy to raise awareness in the US of the transformational effect of the Paralympic Movement ahead of the Rio 2016 Paralympic Games and I would like to thank all those who attended Wednesday’s roundtable discussion.

“There was lots of excellent dialogue involving several leading disability advocates in the US. I think everyone in the room, especially after hearing from Channel 4’s inspirational Dan Brooke, fully understood the role Paralympic sport can play in transforming attitudes and contributing to a more equitable society for all.””