Winter 2010 - Issue 5

Help Us Continue the Collaboration

Get LinkedIn to the DHRN conversationIn order to continue the conversation, the DHRN has not only launched its legacy website (www.dhrn.ca), but has also created a group on www.linkedin.com. We hope you will continue the collaboration.

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To increase knowledge about biological, social, and community related

factors in order to minimize further impairment, improve levels of ability, and

enhance community participation of persons with disability.

Mission

On February 4, 2010, DHRN held its Student Conference and Speaker Series in Vancouver. Packed with networking and learning opportunities, this interactive conference focused on collaboration as a key competency for disability health research students. Read more about it and see some photos of the event.

2010 DHRN Student Conference Overview

Thanks to Edith MacHattie and Kate Naphtali, the Sexual Device Manual for Persons with Disabilities is now available and is already making waves. Find out how you can download your copy today.

The DHRN is closing its doors effective March 31, 2010. Dr. Bonita Sawatzky shares her perspective and gives us hope that the conversation will continue among us. Dr. Sawatzky speaks for Co-Leaders Dr. Lawrence Berg and Dr. Chris McBride in thanking you all for your contributions.

Sexual Device Manual Reviewed A Few Final Words

And more

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The 2010 DHRN Student Conference, Communicating for Effective Collaboration, was held at the International Collaboration on Repair Discoveries (ICORD) on February 4, 2010. Focused on building communication skills for collaboration, the conference was put together by a volunteer student advisory committee. The event delivered diverse perspectives, rich experiences and practical tips from researchers, students, and the disability community.

Some of the highlights of the conference included the keynote speaker, Dr. Heather McKay, two student panels and speakers who addressed the up’s and downs of collaboration. Dr. McKay, Director, Centre for Hip Health & Mobility, presented “From evidence to action: Creating and sustaining key partnerships”. Two workshop streams were offered; collaboration with the disability community and collaboration within the research community. In addition to the full day of speakers and interactive sessions, students were invited to attend a joint ICORD/DHRN reception and a poster competition. Winners of the poster competition can be found in this issue of Link.

A special thanks to all members of the DHRN Student Advisory Committee and committee Chair, Dr. Bonita Sawatzky, for their time, dedication, and creativity in planning the DHRN Annual Student Conference.

Please go to www.dhrn.ca for a full photo gallery of the conference.

DHRN Student Advisory Committee

Krista Best, PhD Candidate, Department of Rehabilitation Science, University of British Columbia

Laura Hockman, Executive Director, Independent Living Vernon and Masters Student, Interdisciplinary Graduate Studies, University of British Columbia Okanagan

Courtney Kang, MPH Candidate, School of Population and Public Health, University of British Columbia

Megan MacGillivray, MSc Student, School of Human Kinetics, University of British Columbia

Rianne Ravensbergen, PhD Student, Cardiovascular Physiology, Department of Biomedical Physiology and Kinesiology,Simon Fraser University

Earllene Roberts, PhD Student, University of British Columbia Okanagan

Inderjeet Singh Sahota, MSc Student, Cardiovascular Physiology, Department of Biomedical Physiology and Kinesiology, Simon Fraser University

by Wendy Creelman

2010 DHRN Student Conference

“ “Each speaker brought in some new perspectives & relevant approaches, to either broaden our

understanding or learn new ways to communicate or conduct collaboration at multiple levels & for multiple purposes.

Bailar-Heath & Hough (2009) recently reviewed a publication that was funded by the DHRN. Entitled “pleasureABLE: Sexual device manual for persons with disabilities,” this manual received high praise from the reviewers. They explain that rehabilitation professionals have difficulty discussing sexuality with their spinal cord injury/disorder (SCI/D) patients and that they are pleased that this manual has been produced to assist them. Bailer-Heath & Hough describe the manual as “practical and informative with an emphasis on enhancing ability and diminishing barriers to a healthy sex life.”

The review speaks to the strength of the publication in that it not only lists sexual devices; it discusses general suggestions for body placement, for planning sexual activity, and general safety issues

A. Krassioukov, E. MacHattie, K. Naphtali, W. C. Miller, S. Elliott:pleasureABLE: Sexual device manual for persons with disabilities

by MaryBeth Bailar-Heath • Sigmund Hough

Published online: 4 December 2009 Springer Science+Business Media, LLC 2009

Book Review

when engaging in sexual activity and positioning. The reviewers especially like the positive quotations related to sexuality and sexual “myths and realities” interspersed throughout the manual in that they normalize differences in sexuality after an injury. By addressing sexual “myths and realities” in this manner, the authors do a good job of making it less technical and put the focus where it should be which is on a healthy, pleasurable sex life. Additionally, the reviewers comment that the authors do a good job of being inclusive of those from different backgrounds.

Bailar-Heath & Hough were pleased to have met Dr. Krassioukov, Dr. Stacy Elliott, Kate Naphtali and Edith MacHattie at the 2009 Annual Conference of the Academy of Spinal Cord Injury Professions in Dallas, Texas. They commented on our very own Dr. Krassioukov’s parting words to them, “We are all ABLE!” The DHRN commends the full team that has created such a successful publication to meet an important need.

DHRN Speaker Series

The DHRN recently held a speaker series that included three exceptional speakers. One session was held in Kelowna and two others were held in conjunction with the DHRN Student Conference in Vancouver as pre and post conference sessions. We are pleased to announce that we have fi lmed these presentations and that they will be available for your viewing pleasure at www.dhrn.ca as part of a full DHRN legacy video library.

Disability, Technology and the Right to ExistDr. Tim Stainton, Professor, School of Social Work, University of BC and Director of the Centre for Inclusion and Citizenship

Working Together on Employment: People with Disabilities, Labour Markets, Public Policies and Canadian FederalismDr. Michael J. Prince, Lansdowne Professor of Social Policy, Faculty of Human and Social Development, University of Victoria

Maximizing Mobility After SCI: Untangling the Infl uence of Functional Limitations, Fitness, and SkillDr. Rachel Cowan, Post-Doctoral Associate, Applied Physiology Laboratory at the Miami Project to Cure Paralysis, University of Miami, Miller School of Medicine

Download your own free copy of this manual at:www.dhrn.ca

www.dhrn.ca

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Autonomic assessment as a part of wheelchair Paralympics athlete’s classifi cation

Dr. Andrei Krassioukov is the principal investigator leading a team of ten co-investigators with a goal to develop an easy method to examine the autonomic function of Paralympic athletes with Spinal Cord Injuries (SCI). The project, entitled Autonomic Assessment as a Part of Wheelchair Paralympics Athlete’s Classification, is important because the autonomic nervous systems of individuals with SCI respond differently, depending on the level and severity of their injury. Dr. Krassioukov hopes that a simple test could be developed that would be incorporated into the current Paralympic classification guidelines in a way that provides a fairer assessment of individuals with Spinal Cord Injury (SCI). He wants to even the playing field for those with SCI.

Currently, Paralympic athletes with SCI put their lives on the line to try to level that playing field. From previous research, we know that athletes with SCI have differing levels of blood pressure due to their condition. Many have low blood pressure, body temperature irregularities, and bowel and bladder dysfunction as a result of SCI. Their autonomic systems do not function properly. An able bodied person who exercises, for example, experiences an automatic increase in blood pressure and heart rate. Someone with SCI does not experience this automatic body response to exercise. This leads to fatigue and low endurance to exercise. An amputee and a person with SCI, both participating in wheelchair sports, would appear to be equal participants, but the reality is that their abilities to control their autonomic functions are quite different. An amputee retains the functions of their autonomic system whereas a person with a spinal cord injury does not. To compensate for this, athletes with SCI put themselves in a dangerous position by engaging in “boosting” to intentionally cause

Autonomic Dysreflexia during training or competition.

Autonomic Dysreflexia is “a dangerous rise in blood pressure that is triggered by a painful or non-painful stimulation below the level of spinal cord injury (SCI)” (Krassioukov, A. & Soril, L., 2010). Athletes with SCI are boosting by intentionally inflicting dangerous stimulation to cause Autonomic Dysreflexia in order to boost their performance. Boosting can be fatal and outcomes are unpredictable for the SCI athlete. It can cause the athlete to sweat profusely, get a pounding headache, blurry vision, nasal congestion, nausea and difficulty breathing. It can also cause stroke and death. Dr. Krassioukov and his team want to decrease the practice of boosting as an outcome of this project.

Consultants: Wheelchair athletes & Paralympians:

1. Ms. Jennifer Krempien, Dep. of Nutrition, UBC

2. Dr. Jaimie Borisoff, ICORD, Neil Squire Society

3. Mr. Richard Peter, Program Coordinator, BC Wheelchair Sports

4. Mr. Duncan Campbell, BC Wheelchair Sports

Researcher Connections

Co-investigators:

1. Dr. Patricia Mills, Div. PM&R, Dep. Medicine, UBC

2. Dr. Janice Eng, ICORD, School of Rehab, UBC

3. Dr. Darren Warburton, Experimental Medicine Program, UBC

4. Dr. Jack Taunton, Division of Sports Medicine, UBC

5. Dr. Russell O’Connor, Div. PM&R, Dep. Medicine, UBC

6. Dr. Fin Biering-Sørensen, Spinal Unit, Copenhagen, DK

7. Mrs. Shirley Wong, Grad Student, ICORD/UBC

8. Mrs. Amira Tawashy, Grad Student, School of Rehab, UBC

9. Mr. David Mikhail, UBC Student, ICORD/UBC

10. Ms. Lesley Soril, ICORD Research Associate

PRINCIPAL INVESTIGATOR NAME (PI): Andrei Krassioukov, MD, PhD, FRCPC

by Wendy Creelman

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The test that they are developing will evaluate the severity of autonomic dysfunction in a person with SCI in order to provide a better understanding of their capabilities. Once this is established, the goal would be to add this variable to the current classification testing already done under International Paralympic Committee (IPC) regulations in order to create a system of equity for SCI athletes. Although the IPC condemns the practice of boosting, it is almost impossible to definitively detect. The hope is that a test and new classification system will discourage the practice of boosting among athletes with SCI.

Dr. Krassioukov started communicating with the Research Committee of the IPC five years ago in regards to this project. He proposed that if he could develop a simple non-invasive test for autonomic assessment that autonomic evaluation could become standard in future Paralympic classification for the International Paralympic Games. The IPC accepted this proposal for the Beijing 2008 Paralympic Games. Funding through the Disabilities Health Research Network was provided for the initial steps in the project. Testing was started on 27 athletes from the international wheelchair rugby team in BC in 2007/2008 when an international Paralympic competition was held in Burnaby, BC. The resulting data was then presented in October 2008 at the International Spinal Cord Scientific (ISCoS) Conference in Florence, Italy. The IPC was very supportive of this research.

Shortly after this, Dr. Krassioukov applied to continue the study at the Vancouver 2010 Paralympic Games. His team’s project was the only one accepted out of four to be permitted to open a clinic right in the Olympic village. This was quite an honour as it had never been done before. In addition to this clinic, there are also plans to open a clinic at the International Collaboration on Repair Discoveries (ICORD) which will test Paralympic athletes who will not be residing in the Olympic village

during the games. Eight of Dr. Krassioukov’s students and colleagues will receive official accreditation to be on site at the Olympic village and will be scheduled for nine hours a day to evaluate volunteer athletes. As a project supported by the IPC, communications have already been sent to all participating athletes to request their participation in this project. When the research team was involved in testing wheelchair rugby athletes there was so much interest they had to turn people away. They are expecting as much enthusiasm from the wheelchair curling and sledge hockey teams at the 2010 Vancouver Paralympic Games.

Dr. Krassioukov would like to thank his team, the IPC, volunteer athletes and funding supporters: DHRN and the Craig H. Neilsen Foundation. He is passionate about this work. His goal as a physician and as a human being is that the work of his research teams will make a difference in evening the playing field for athletes with SCI so that they can participate in international sport with less risk. Dr. Krassioukov is passionate when he states that “These athletes are already my hero’s. Any athlete participating in sport is an incredible achievement that I would like to support through our work.”

References

Krassioukov, A., & Mills, P. (2010). Boosting and you: Understanding the risks [Brochure]. Vancouver, BC: Author.

Krassioukov, A., & Soril, L. (2010). Autonomic dysreflexia and you: Recognize and act [Brochure]. Vancouver, BC: Author.

Dr. Andrei Krassioukov’s BioDr. Andrei Krassioukov is a clinician scientist who obtained his medical degree from Volgograd State Medical School, Russia and his PhD degree at the Ivan Pavlov Institute of Physiology, Russian Academy of Science, St. Petersburg, Russia. In 1991, through the Canada-USSR research exchange program, he started his research career in North America. Presently, he is an Associate Professor, Department of Medicine, Div. of Physical Medicine & Rehabilitation at the University of British Columbia, Vancouver, BC and a Principle Investigator at the International Collaboration On Repair Discoveries (ICORD). He is also a staff physician at the Spinal Cord Program at the GF Strong Rehabilitation Center in Vancouver, BC. His research involves utilization of experimental animal models, clinical investigations in humans, and is focused on investigation of the mechanisms of autonomic dysfunctions after spinal cord injury. He has authored and co-authored more than 100 peer-reviewed manuscripts, book chapters and reviewed articles. His research is supported by numerous national and international agencies such as Christopher and Dena Reeve Foundation, Heart and Stroke Foundation of Canada, British Columbia Neurotrauma Fund/Rick Hansen Institute and others. For the last four years as the Chair of Autonomic Standards Committee for the American Spinal Injury Association and International Spinal Cord Society (ASIA/ISCoS), he is leading the international initiative on development of autonomic assessment which is to be added to the presently established neurological evaluation of individuals with spinal cord injury.

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PhD/Post Doctoral Poster Winner: Andrew Gaudet

A Peripheral Perspective: Exploring Galectin – 1’s role in axon regeneration

A.D. Gaudet 1-2-3, G. Leon1-2, R. Rowan1-2, T. Kadoya4, H. Horie1-2, F. Poirier6, M.S. Ramer1-2-3

1International Collaboration On Repair Discoveries (ICORD); 2Vancouver Coastal Health Research Institute; 3Department of Zoology, University of British Columbia, Vancouver, BC, Canada; 4Bio Process Research and Development Laboratories, Kyowa Hakko Kirin Co. Ltd., Gunma, Japan; 5Research Centre for Brain Research and Oral Science, Kanagawa Dental College, Yokosuka, Kanagawa, Japan; 6Unite Mixte de Recherche Centre Nationale de la Recherche Scientifique, Institut Jacques Monod, Paris, France.

Unlike axons in the adult central nervous system (CNS; brain and spinal cord), those in the peripheral nervous system (PNS) can regrow following injury. Despite this, PNS axons’ ability to regenerate is

restricted by gaps or by long distances between injury and target. This team studied the role of the small protein galectin-1 in peripheral axon regrowth, with an overall goal of identifying targets that might improve nervous system repair.

Although galectin-1 improves PNS axon regeneration, the mechanisms underlying its action were not known. Galectin-1 activates immune cells called macrophages, which are recruited after injury and promote PNS axon regeneration by removing cellular debris and releasing growth factors. This teams recent paper implicates galectin-1 in macrophage recruitment to the injury site – injected galectin-1 even recruits macrophages to an uninjured nerve – and this likely underlies galectin-1’s effects on axon regeneration. These results could affect treatment strategies for PNS and CNS injuries.

Andrew Gaudet, Ph.D. Candidate, ICORD / Department of Zoology / Vancouver Coastal Health Research Institute, adg@icord.org

Effects of wheelchair position on cardiovascular control

I.S. Sahota1-2, J.F. Borisoff2, L.T. McPhail2, V.E. Claydon1-2

1Department of Biomedical Physiology and Kinesiology, Simon Fraser University and 2International Collaboration On Repair Discoveries (ICORD), University of British Columbia, BC, Canada

Wheelchairs capable of altered seating positions facilitate activities of daily living and improve quality of life for wheelchair users. However, changes in wheelchair position may pose a considerable cardiovascular stress, particularly with elevated seating. In this study they analyzed

cardiovascular reflex control in 13 able-bodied volunteers while supine and in different wheelchair seating positions (standard, elevated and lowered). Blood pressure was well maintained in the different seating positions. However, during elevated seating stroke volume decreased, associated with a compensatory increase in heart rate. Cerebral blood flow was reduced when sitting compared to supine. These data suggest that changes in wheelchair seating represent a considerable orthostatic stress, which is normally well compensated by baroreflex responses. The fall in cerebral blood flow when sitting despite well maintained blood pressures in the study volunteers was surprising, and suggests that cerebral autoregulation was challenged by the manoeuvre. Responses in those with impaired cardiovascular reflexes remain to be determined. However, a case study of a volunteer with complete spinal cord injury at the 4th thoracic level revealed more drastic changes in heart rate, stroke volume and blood pressure that may have implications for exercise performance and orthostatic blood pressure control in wheelchair users with autonomic impairment.

This research was supported by funding from Simon Fraser University and the Heart and Stroke Foundation of Canada.

Inderjeet Sahota, M.Sc. Candidate, Cardiovascular Physiology Lab, Department of Biomedical Physiology and Kinesiology, Simon Fraser University, isahota@sfu.ca

Student Poster Presentations

Student Connections

Masters Poster Winner: Inderjeet Sahota

The DHRN has brought many people together that probably would never have met nor spoken to each other due our diverse perspectives. None of the meetings I typically attend would have the social science people present. The activities of the DHRN have made me realize what we in the biomedical world are missing. I believe that by bringing medical, basic science and social science researchers and students, as well as community members from the disability world, together, we have broadened the world of disability health research in BC. The engagement between the groups has begun and hopefully will continue as DHRN becomes more virtual after March 31, 2010. The DHRN has opened the context by which we may think and, hopefully, ask more meaningful questions as we work to improve the lives of people with disabilities.

The DHRN has increased the level of visibility of disability health students from BC at national and international levels due to our ability to get these students to conferences in Canada and overseas. Students have also been able to see the breadth of work done around the world and have had the opportunity to meet with other high level researchers. We hope that by being able to send the students to the conferences, connections with other academics and students have been initiated. Now it’s up to them to maintain these. We’ve given the students tools and ideas of how to do this through our Graduate Student Conferences. Although we are very connected through internet and social networking systems, it still takes time and energy to communicate effectively. The types of connections needed to produce high quality research teams develop through intentional communication. We hope the DHRN has modeled this type of communication and encouraged others to practice it as they study, research, or work, in and for the disability community. continued on Page 08

Dr. Bonita Sawatzky, DHRN Co-Leader

The Effect of Compression Stockings on Orthostatic Tolerance

C.L. Protheroe, A. Dikareva and V.E. ClaydonDepartment of Biomedical Physiology and Kinesiology, Simon Fraser University, BC, Canada.

Syncope (fainting) affects approximately 6% of the population and accounts for 1-5% of emergency hospital visits. There are many causes of syncope and treatment options are numerous; however, few have proven to be successful. As a non-pharmacological treatment, physicians often prescribe compression stockings, despite a lack of scientific evidence confirming

their efficacy. Therefore, the aim of this study was to investigate the effectiveness of compression stockings in preventing fainting spells.

A tilt table and a lower body negative pressure chamber were used to simulate prolonged standing, a common trigger for fainting episodes. Physiologically this results in blood pooling in the lower extremities, and challenged cardiovascular control. Eventually, this control fails and a near-faint results. An individuals’ susceptibility to syncope can thus be determined from the time taken to initiate this near-fainting response (their orthostatic tolerance [OT]). This team hypothesized that compression stockings would reduce blood pooling in the legs and, therefore, improve OT.

Results revealed no difference in OT between compression (26.8±2.3min) and placebo (29.5±2.3min; p=0.2) stockings. However, sub-analyses revealed certain individuals did benefit from compression stockings, while others were actually worse; compression stockings only improved OT in tall individuals with slim calves. Preliminary data suggest that a simple algorithm can identify those most likely to benefit from compression stockings, and thus could be used to guide clinical decision-making. Future research is underway to further elucidate the relationship between anthropometric parameters and the effect of compression stockings on susceptibility to fainting.

This research was supported by funding from Simon Fraser University and the Heart and Stroke Foundation of Canada.

Clare Protheroe, Undergraduate Honours Student, Cardiovascular Physiology Lab, Department of Biomedical Physiology and Kinesiology, Simon Fraser University, cprother@sfu.ca

Anastasia Dikareva, Undergraduate Honours Student, Cardiovascular Physiology Lab, Department of Biomedical Physiology and Kinesiology, Simon Fraser University, ada3@sfu.ca

Undergraduate Poster Winners (team submission)

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Making BC DisabilityResearch a PriorityMaking BC DisabilityResearch a Priority

The Disabilities Health Research Network (DHRN) formed in 2005 with a view to create collaboration among researchers, clinician/practitioners and the community to better the lives of Canadians living with disability. The DHRN is one of eight Health of Population Networks created as a result of funding through the Michael Smith Foundation for Health Research (MSFHR). The DHRN is proud of the network that has been built. Due to funding constraints, however, the MSFHR is no longer able to fund the Networks and the DHRN will officially close on March 31, 2010. The DHRN would like to continue the collaboration that has begun through a legacy website and the formation of a group on LinkedIn, a free web-based service which allows ongoing conversations between approved participants. We sincerely hope that you join us as the DHRN evolves into an even more collaborative model of continued conversation. This conversation will need your input in order to be sustained.

The DHRN website legacy site will house, among other things, a directory of people with an interest around disabilities health research. We are calling this our “Directory of Experts” and would like to invite you to be involved so that the DHRN connections can continue to grow. Simply go to www.dhrn.ca and click on “Experts Directory” and then select “Add yourself to the directory.” A form will be presented for you to fill out. If you wish to add a photo, documents or a video to your profile, please e-mail these to disabilitieshealthresearch@gmail.com. After March 31, 2010, updates will be more infrequent so please add yourself to the Directory now.

LinkedIn is a professional worldwide online network established to exchange knowledge, ideas, and opportunities with like-minded people. We have formed the “Disabilities Health Research Network” group on LinkedIn and would also like to invite you to join us here. This will enable a larger – worldwide – network the opportunity to share and connect around disabilities health research work. To join, we would like to invite you to create your profile by going to www.linkedin.com

Once your LinkedIn profile is created, you can join our group by simply searching for Disabilities Health Research Network and requesting to join. An e-mail will be sent to you as soon as the request has

been approved by Dr. Bonita Sawatzky, DHRN Co-Leader. Dr. Sawatzky has agreed to facilitate the DHRN Group after the discontinuation of the DHRN on March 31, 2010.

It is with sadness that we see the current DHRN go but our hope is that you will assist us to take what we have built together and move it forward in a different form. You can contribute by entering your information on both the DHRN legacy website Experts Directory and LinkedIn. Together we are stronger in fostering collaboration in health research which creates more meaningful change and innovation for those living with disabilities.

Co-leadersDr. Lawrence Berglawrence.berg@ubc.ca

Dr. Bonita Sawatzkybsawatzky@cw.bc.ca

Dr. Chris McBridecmcbride@rickhanseninstitute.org

Director of ProgramsDr. Diane Reeddiane.reed@ubc.ca

Communications OfficerWendy Creelmanwjcreelman@gmail.com

DHRN Projects AssistantLindsay Balfourlindsay.balfour@ubc.ca

Finance OfficerMichele Bjornsonmichele.bjornson@ubc.ca

Kelowna OfficeUBC OkanaganArts 368B3333 University WayKelowna, BC V1V 1V7

Phone: (250) 807.8793Fax: (250) 807.8001W: www.dhrn.caE: dhrn.info@ubc.ca

ContactsDHRN Legacy Website Launches!

Continuing the Collaboration

continued from Page 07

The DHRN has also made disability a greater priority through increased awareness of disability health issues by fostering new teams between community groups and researchers/students. By encouraging a team approach, we’ve tried to listen to the needs of the disability community, thus raising their voice and needs, in terms of what’s important to that community. Some of the teams have gone beyond BC and obtained funding at national or international levels. They have developed new knowledge and educational material that is accessible to everyone. With these developments, change can happen and new policies can be implemented. We applaud those DHRN members who have been so successful. Our contribution towards some of these efforts may have been small but we are grateful to have been a part of these initiatives. DHRN has and will continue to make a difference. –Dr. Bonita Sawatsky

www.dhrn.ca