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MedStarNRH.org/SCI

The MedStar National Personal Health Information/Record Rehabilitation Network’s Spinal Cord (SCI) Maintaining your medical information organized and easily accessible is very important. People facing chronic system of care is dedi- medical conditions or with histories of medical problems need to maintain a system where all their medical cated to providing its information is kept, in one place, secure and easily accessible. Keeping your medical records organize can help patients, families and you access important medical information in an easy manner. Everything from medical providers, current medications, allergies, emergency contact information will allow you to have knowledge and control over your the community with condition, and will save you great time in the event of an emergency. By maintaining and organized file, whether current news and in - it is in paper form, electronic or any way you choose to do so, you will ensure that your treatment is kept opti- formation as well as mized, minimizing the risks for mistakes, and expediting your treatment in case of need. Talk to your doctor opportun ities to learn about ways in which he/she can help you develop or maintain your personal medical information. You can also about advancements in learn more about this by visiting: research, technology www.hfcdhp.org/products and social opportuni- www.nextstepincare.org/caregiver_home/Personal_Health_Record ties. To sign up, please www.nomoreclipboard.com go to: www.myphr.com MedStarNRH.org/SCI Don’t wait another day, start developing your own system and talk to your family and friends about doing so as well. **MNRH does not endorse or expect the use of specific products.

Obesity in SCI

Obesity is a major public health issue in the United States. Studies have shown that obesity increases the chances of death. Obesity is characterized by the progressive excess of fat accumulation on your body that has multiple consequences on your organs. Obesity has been linked to increase rate of cardiovascular disease, metabolic syn- drome such as type 2 diabetes, cancer, and musculoskeletal disorders. If you have had a (SCI), Camilo Castillo, MD you are at risk of developing obesity because of the decrease in mobility and, in many cases, the dependence on Interim , wheelchair mobility. As such, Increase in weight after SCI has been associated with risk of developing on SCI Program the nerves of your hands during your transfer due to the increase effort to move your weight. You are also at risk to have difficulties in gaining or keeping your independence with bowel and bladder training since it would be difficult for you to perform these tasks. Some studies have reported shorter life span in obese SCI patients. For the individual with SCI who is not obese, prevention is the best way to avoid complications from obesity. A com- mitment effort must be made by persons with SCI to avoid obesity with considerations including having an ap- propriate wheelchair and encouragement for an active lifestyle, balance diet and an exercise regimen should be the goal. In general, poor level of fitness after SCI to be avoided with the adoption of an exercise program that increases fitness and help patients to lose weight. Pamela Ballard, MD If you are concern about you weight, please contact your SCI doctor or your general health care provider and ask Attending Physician, questions about obesity in SCI SCI Program Camilo Castillo, MD Interim Medical Director, Spinal Cord Injury Program Program Director, Spinal Cord Injury Medicine Fellowship Assistant Professor, Department of Rehabilitation Medicine MedStar Georgetown University Hospital

EVENTS Lorraine Vinci, PsyD Co-Director, SCI Program Please Join us for a special event: United Spinal DC Chapter Summer Membership Picnic June 9, 5 – 7:00 Dining room, Ground Floor, NRH Speaker: Alexandra Bennewith, MPA, Vice President, Government Relations Suzanne L. Groah, MD, MSPH United Spinal Association Director, SCI Research Program Topic: United Spinal Advocacy and legislative issues

Picnic sponsored by Coloplast! The session will be followed by a Question & Answers session. Come mingle with our United Spinal board and meet other members. RESEARCH Vocational Rehabilitation Resources

Study on Urinary The purpose of Vocational Rehabilitation (VR) programs is to assist individuals with disabilities with services to Symptoms help them prepare for, secure, regain or retain employment. If you are interested in returning to work or identify current alternatives available to you, don’t wait and contact your local vocational rehabilitation agency. Here you This study strives to pre- will find a list of local agencies providing services in your area: vent urinary symptoms from developing into an in- In the Washington, DC area: fection that prevents you from participating in your DC Rehabilitation Services Administration (RSA): daily life. In a previous http://dds.dc.gov/service/vocational-rehabilitation-services study, we discovered that [email protected] people with higher levels of Lactobacillus in their (202) 730-1700 bladder experienced fewer TTY: (202) 730-1516 urinary symptoms. Lacto- 1125 15th Street, NW bacillus is a well known Washington, DC 20005 probiotic that is capable of Office Hours: Monday to Friday, 8:15 am to 4:45 pm maintaining digestive health and we are now ex- Maryland: ploring it’s potential to as- Maryland Division of Rehabilitation Services (DORS): sist with bladder health as well. http://dors.maryland.gov/resources/Pages/locations.aspx Phone: 410-554-9442 or 888-554-0334 toll free Inclusion criteria: Videophone: 443-798-2840 • Spinal Cord Injury (trau- Email: [email protected] matic) or Spina Bifida • Uses inter mitten Virginia: catheterization for blad- der management Virginia Department for Aging and Rehabilitative Services (DARS): • 2 or more UTI’s in the last http://www.vadars.org/offices.aspx year. Toll Free Number:800.552.5019 Toll Free TTY: 800.464.9950 If this sounds like some- thing that could benefit you please contact Inger Ljungberg at United Spinal (202) 877-1694 or inger.h.ljungberg@med- Local Chapter of the United Spinal Association (USA) star.net. The Spinal Cord Injury (SCI) Network of Metropolitan Washington is the local chapter of the United Spinal As- sociation (USA), which serves the D.C., Maryland and Northern Virginia. We are embarking on a journey to em- Study on Fitness power those living with spinal cord injuries and disorders (SCI/D). The United Spinal Association and MedStar National Rehabilitation Hospital (MNRH) have partnered to help improve the quality of life for people living and Independence with paralysis due to SCI/D. In our aims to improve lives, we hope to positively impact the members by provid- The Research Department ing services such as but not limited to; advocating, monthly peer support group, access to wellness and fitness. here at MedStar is looking The more people from the D.C. metropolitan area with SCI/D and related stakeholders who join us in our mis- for individuals with SCI to participate in a study that sion, the more effective we will be, so please join us. measures both fitness and Join Spinal Cord Injury Network of Metropolitan Washington – when you join, we ask that you please select the independence. To gain a option to be contacted. This will allow us to keep you informed about your local chapter. better understanding of how fit one must be to go Join our monthly spinal cord injury peer support group held at Medstar NRH. about their daily lives im- Main Website - http://unitedspinal.org mediately after injury as well as through one’s life- http://www.unitedspinal.org/newsletter-sign-up/ time, we will ask you a se- ries of questions regarding your daily life as well as ask Sports News: you to perform a physical fitness test The Quad Rugby Team traveled to Houston, Texas for the Quad Rugby National Tournament this April. This was Inclusion criteria: the Punishers second consecutive trip to Nationals. The team had a great season, succeeding at tournaments in • At least 18 years old Houston, Raleigh, Philadelphia, and Jacksonville. Weeks before the tournament, the Punishers were surprised to • Have a spinal cord injury learn they were promoted to Division 1 after competing in Division 2 the entire season. The Punishers were given or disease for at least 6 the 8th seed in Division 1. The team had some tough losses at the tournament, losing by 1 or 2 goals in 3 of their moths 5 games. With their victory over the Tampa Generals, the Punishers secured 6th place at the tournament. The • Can bend both elbows team looks forward to working hard over the summer to prepare for next season. against gravity • Are not able to use leg The Punishers Quad Rugby team has two athletes headed to muscles, except for Birmingham, Alabama to try out for the USA Paralympic spasms, to help with Quad Rugby team. Congrats to Kevin Crombie and Paul transfers Hopkins. Good luck at tryouts! • Have not had a heart at- tack or chest pain in the Tricia Nelson, CTRS, CDSS, CBIS last 30 days Inpatient Resource Recreation Therapist • Do not have a pressure Spinal Cord Injury Unit sore on any part of the Punishers Quad Rugby Coach body that touches part of medstarNRH.org/quadrugby the wheelchair.

We invite people of all fit- ness levels to participate. If this study is of interest to you, please contact Inger Ljungberg at (202) 877- 1694 or inger.h.ljung- berg@.net.