Until recently, brain injury survivors in North and West Vancouver hunting for community-based support had a long trek ahead of them. The nearest rehabilitation facility and support group were located at GF Strong in Vancouver, but many survivors find trips out of their neighbourhood alienating, or simply a challenge too huge to consider.
That changed in January, when the first brain injury support group on the North Shore in a decade was held at Lions Gate Hospital. More than 25 brain injury survivors, caregivers, and interested parties crowded into a conference room in North Vancouver. Most expressed a sincere relief at finding a local group where they could meet fellow community members with similar experiences.
The North Shore Brain Injury Support Group was one of the first endeavours of North Shore Brain Injury, a society incorporated in British Columbia November 5, 2014. NSBI’s main goal is to serve brain injury survivors by finding out the needs of the local community and providing them if they’re currently unavailable. “If someone else is already providing the service well, we’ll refer clients; we’re not going to re-invent what someone else is already doing,” says Richard Wagar, executive director. “When I asked around it was clear that a support group on the North Shore was desperately needed.” Wagar, a retired executive coach and facilitator, had difficulty reaching services when recovering from his own brain injury and wanted to make sure that others didn’t fall through the same cracks he did.
Participants Kieran Neuenfeld and Lillian Wong at the Watson Centre Society for Brain Health’s cognitive rehabilitation trial at the University of British Columbia. The Arrowsmith Program, which has traditionally helped promote neuroplasticity in underdeveloped brain areas of those with learning disabilities, is now being tested with people recovering from TBI and concussion. Participants first completed Arrowsmith testing to target the specific brain areas that need the most stimulation. Most of the participants then completed neuropsych testing as well as a series of magnetic resonance imaging (MRI), which will be repeated upon completion of the study to determine efficacy of the program.
The support group was only the first step. The North Shore survivor’s community has made it clear that they aren’t content with sharing their experiences, although a sense of community has been a big draw. Survivors with old injuries know, and survivors with newer injuries are hopeful, that rehabilitation is a constant process with improvements possible even decades after the original injury. Guest speakers at the support group have focused on improvement, maintaining good health, and advocacy for better treatments. Notable past speakers have included Connie Jorsvik,a nurse turned patient advocate at Patient Pathways; Jackie Hamm, spokeswoman for the North Vancouver Recreation and Culture Commission’s rehabilitative aqua fitness program at Karen Magnussen Pool in Lynn Valley; and Poran Poregbal, founder and clinical supervisor of G.V. Counselling and Education Society, which offers clinical counselling and psychoeducational programs.
Notably, UBC researchers from the Watson Centre Society for Brain Health took note of the support group posters and asked to speak about advances in neuroplasticity and recruit participants for a study attempting to use cognitive remediation – the Arrowsmith Program – with the TBI and concussion population. Their goal is to help survivors of brain injury recover beyond the point when they are typically told to merely “cope with their injuries and difficulties.” The trial began in mid-June and is still ongoing at the time of this article. “Our very driven and motivated group has been putting in amazing effort and engagement, which are essential to help drive neurological change,” says Josh Poirier, head researcher. “An early concern that this population would not be able to stay focused on the activities for extended periods of time, in my opinion, has been merely speculation. Not only have we had over a 95% attendance rate thus far, but participants have been thriving and working at or above the Arrowsmith Program expectations. I couldn’t be more thrilled with how well the study has been progressing and am looking forward to the final outcome.”
For years brain injury survivors on the North Shore have envied stroke survivors. When a brain injury survivor is discharged from Lions Gate Hospital Neurological Rehab to outpatient rehab, if the brain injury is a stroke they can take advantage of the recreation and social activities offered at North Shore Neighbourhood House by the North Shore Stroke Recovery Centre (NSSRC). But most brain injury survivors did not have a stroke, and they have nowhere to go after leaving formal rehab. They often feel lost and alone after leaving the hospital, become despondent, and rapidly fail. Many would have bene ted from programs like those at NSSRC, but were disqualified from participating.
Now North Shore Brain Injury and the North Shore Stroke Recovery Centre are cooperating in providing access to brain injury survivors through separate funding. The first joint initiative is a Friday afternoon drop-in program at North Shore Neighbourhood House for survivors of all types of acquired brain injuries, from traumatic brain injuries (TBI) and concussions to cerebrovascular accidents (CVA/stroke) to meet others in the community and come together to work on recovery.
Vancouver Coastal Health has indicated a need for recreation and social activities for brain injury survivors similar to those offered by NSSRC and now the stroke recovery centre’s experience is available to North Shore Brain Injury for this purpose.
Every brain injury is unique, and survivors some- times have needs that can’t be addressed in group
activities. North Shore Brain Injury offers individual advocacy services to advocate for a brain injury survivor in any reasonable cause. Brain injured individuals occasionally need an advocate in their dealings with others to interpret, to take their side, or even to zealously advocate for them. Some advocacy organizations advocate for causes, but provide only clerical assistance in filling out forms. North Shore Brain Injury will advocate for any brain injury survivor for any reasonable cause. Some of the more specialized assistance provided includes WorkSafeBC workers’ claims advocacy for claims involving brain injury. North Shore Brain Injury will also interpret and advocate for brain injury survivors when dealing with other agencies.
Wagar credits the society’s early successes to adopting best practices from great partners, and to the support of Tina Suter of B.R.A.I.N, Lillian Wong of the Vancouver Brain Injury Survivors Support Group, Carol Paetkau of the Fraser Valley Brain Injury Association, and Will Lewis of the Northern Brain Injury Association.
From emotional camaraderie to realistic assistance in day to day challenges, North Shore Brain Injury looks forward to helping people touched by brain injury who often are not able to step forward and help themselves.
For more information, please contact North Shore Brain Injury at firstname.lastname@example.org or 604-779-2472.