Virtual Townhall Meeting:

1. Virtual Townhall Meeting: Reducing the Risk of Spinal Cord Injuries for People with SCI

2. Rehabilitation Research and Training Center: Secondary Conditions in the Rehabilitation of Individuals with Spinal Cord Injuries Research Sites: National Rehabilitation Hospital, Washington DC. University of Miami School of Medicine Collaborators: Independent Living Research Utilization Program The National Spinal Cord Injury Association Spinal Cord Injury Network

3. RRTC Team • Composed of national leaders in SCI medicine, research & advocacy • Consumers • SCI clinicians • SCI researchers • SCI organizations • Independent living advocates

4. RRTC Mission • Expand our understanding and prevention of secondary conditions after SCI, including • Cardiovascular disease • Osteoporosis • Depression • Quality of life • Pain • Decubitus ulcers • Respiratory complications • Participation from consumers • Dedicated to education

5. Secondary Conditions After SCI • People with SCI are surviving longer • Chronic diseases are now being seen in people with SCI • Heart disease • Cancer

6. “Accelerated Aging” • In people with SCI, this can be the occurrence of disease earlier than expected compared with able-bodied people • In some cases, it can also mean that the disease occurs more rapidly or is more aggressive

7. Exercise • Known to decrease the risk for many diseases, including diabetes, stroke, heart disease, and some cancers • People with SCI exercise less than others

8. Cardiovascular Disease and SCI • Diabetes occurs more often • Heart disease occurs with the same or greater frequency in people with SCI • Heart disease strikes people younger • Heart disease is more advanced at diagnosis

9. Cholesterol • Total cholesterol • HDL = Healthy cholesterol = High • LDL = Lousy cholesterol = Low • Low HDL and high LDL contribute to heart disease risk

10. Cholesterol and SCI • HDL tends to be lower • Can increase HDL with exercise • LDL tends to be higher • Can decrease LDL by eating less fat and with medications

11. What We Are Doing… • We will determine typical levels of the different types of cholesterol according to type of SCI • Then, we can give recommendations about the need to change one’s diet, exercise level, or even start medications

12. Osteoporosis • Decreased bone mass • Typically occurs much more often in women than in men • In women, it usually occurs after menopause • Significant osteoporosis in men is rare • Danger = fractures

13. Osteoporosis and SCI • Men AND women affected • Loss of bone mass starts within DAYS of SCI (hence “accelerated aging”) • Loss of bone mass continues for months-years • Loss of bone mass is much greater • Loss of bone mass occurs below the SCI

14. Without SCI Lower spine Wrist Hip With SCI Around the knee Lower leg Osteoporosis and Broken Bones

15. How Do I Prevent Osteoporosis? • Exercise • Type of exercise dependent on type of SCI • Functional electrical stimulation • Standing • Walking • Medications • Bisphosphonates, PTH, Statins showing promise

16. Other Questions • There are numerous secondary conditions that occur after SCI • Breathing problems • Depression • Bladder infection • Skin breakdown

17. Other Questions • Will regular exercise actually prevent these secondary conditions? • What type of exercise is best for me? • Where is the best place to exercise, at home or at the gym?

18. Some Answers….Soon • We will try to determine the best place for and best type of exercise • We will determine whether regular exercise actually does decrease secondary conditions after SCI

19. Training activities • Prevent secondary conditions in people with newly acquired spinal cord injury as they get discharged from the rehabilitation hospital • Educate future healthcare professionals about secondary conditions and the benefits of exercise from a consumer perspective

20. Prevention of secondary conditions • NRH and SCI Network are developing a peer mentor program to monitor and prevent secondary conditions among people with new SCI • 10 peer mentors will meet weekly by phone and in person with 150 mentees • Peer mentors will be supervised weekly by hospital staff and SCI Life Consultants

21. What peer mentors do... • Provide information about secondary conditions and prevention • Demonstrate prevention techniques • Discuss and answer questions around prevention and exercise • Support community integration • Initiate referrals to clinical providers when needed • Update their information and training on an ongoing basis

22. The outcomes we are tracking • Reduction in the occurrence of pressure ulcers, urinary tract infections, pain, neurocognitive problems, general deconditioning • Fewer hospitalizations for avoidable complications • Better self-management and control over SCI

23. Consumer Professional Partnership Program (CPPP) • Consumer-directed and delivered education program about prevention and exercise for physical therapy and medical students • Individuals with SCI will co-teach program at Washington DC area universities • 1000 future health professionals will be trained in 3 hour sessions • Integration in existing curricula and continuing education programs

24. CPPP continued... • Content will focus on “what is important from a consumer perspective” • Examples include “Barriers to obtain medical care”; “experiences with medical complications”; “patient-provider communication”; “consumer-defined strategies to prevent secondary conditions”; “benefits of exercise” • Help us develop this program at the second Virtual Townhall Meeting in May

25. The Virtual Resource Network on Exercise and Prevention (VRNEP) • RRTC partner ILRU is developing the VRNEP consisting of • A fully accessible Internet site • A Virtual Resource Library (publications and links about exercise and prevention) • A video library • Interactive meetings with SCI Life Consultants, Consumers, Advocates and Clinical Experts • Check back, we need your input!

26. Virtual Townhall Meetings (VTHM) • Every quarter over the next 5 years • We ask for your support and input on RRTC topics • Become a virtual RRTC member and participant

27. Today’s questions What are your personal experiences with secondary conditions related to spinal cord injury? As a person with SCI what are your personal experiences with exercise and physical activity? What would you like the RRTC on Secondary Conditions and Exercise accomplish?