Episode 7 - Facilitators Experience: Insights From The Entire Series
Episode 7 - Synopsis
Facilitator: Seth Mendelsohn
Episode Description: In this bonus episode of The Sharing Experiences with Concussions/TBI podcast, we bring all of the facilitators from the series together in a conversation to share their insights and perspectives on these invisible injuries.
How to listen
MAIN POINTS, TIMESTAMPS, THEMES & RESOURCES
What was the moment that brought help people with concussion/TBI? – 6:42
Connor Massimo: In general, when you treat athletes as a physiotherapist you naturally will begin treating concussions. Personal experience with concussions also shed additional light on the injury that warrant further exploration.
Dr. Lesley Ruttan: Early experiences working with moderate to severe traumatic brain injury led to more exposure to concussions. Then she began working with the Canadian Concussion Centre where she taught workshops to people with persistent symptoms.
Dr. Steph Dallaire: Personal experience with the injury led more curiosity about how he was treating people with concussions. Since the research is always changing there is a need to keep up with current research to ensure he’s able provide the best care to his patients.
Becky Moran: First started treating people with moderate to severe brain injury, but they started to see more patients who were dealing with concussion. It started slow and they had to learn a lot, but now they see a fair share of people with concussions.
Penny Welch-West: Began as a proctor for people who needed accommodations in post-secondary working with student services. Then progressed on through her career supporting people as a speech language pathologist and has been working on creating a peer to peer accommodation model that puts people together with lived experience to help them along in their journey.
Leslie Birkett: Started as a new graduate working in a hospital in London, ON as the only OT. While she was there, she had the chance to help build and work with an emerging area related to brain injury. She loves the challenge and creativity needed in the field.
Underlying themes present throughout each discussion – 15:17
Leslie Birkett: Individuals very in symptomology and needs. Looked are the different types of supports, and how they are often similar but not always the same. Then talking about what things impacted the return-to-work process.
Connor Massimo: It can be beneficial to not compare yourself to the person before injury. Coming up with the concept of a new normal. Understanding the growth that can come from the recovery process.
Dr. Lesley Ruttan: Many people “fall through the cracks” and don’t get the help they need early on. Most’s concussions are not sport related accidents, but a lot of attention and funding go towards sport. The discussion also touched upon how concussion is often invisible and so there are no obvious visible difficulties for other people to see and understand – this can make it hard for both the person going through the injury and the people supporting someone. And lastly, having a good inter-disciplinary care for concussions can be a crucial element to recovery.
Becky Moran: Despite on-going symptoms the participants still continued to pursue their dreams – this came with the understanding that the path to get there just may be adapted.
Penny Welch-West: There were some struggles finding services. Other considerations were having to pay for services that were not guaranteed to help them get better. Sometimes it comes down to trial and error and there is no direct roadmap for most people in recovery, especially when returning to learn. Sadly, students are motivated to get back to their studies but often professors and teachers are not supportive or don’t believe the struggles of the student.
Dr. Steph Dallaire: It can be hard to diagnose concussions especially when considering that anxiety, ADHD and other conditions can present themselves similarly to concussion. When diagnosis is uncertain it can be helpful to consult with a neuropsychologist. Having the primary care practitioner as the quarterback can be a beneficial step but is hard to implement because it demands serial follow ups.
Biggest gaps in knowledge that still exist? – 33:59
Connor Massimo: Outdated information or resources at primary care facilities can leave people in a less than desired spot in recovery.
Dr. Steph Dallaire: Healthcare providers and parents are encouraged to talk with physicians if they have any questions. General practitioners need to know a variety of different areas related to help so it is important to work together as a team and make it easier for GPs to access up-to-date information.
Dr. Lesley Ruttan: There still is a distinct gap in how some GPs share information on concussions. By sharing new research and knowledge translation tools with family physicians can help improve these inefficiencies.
Leslie Birkett: Return to work is a complicated topic given the many different factors and considerations involved in the process. There is a large need to refine the return to work process and ensure employers understand it is not a linear recovery pathway.
Penny Welch-West: Accommodations can be difficult to design and implement with fast-changing technologies and major world events like Covid-19. Creating universal instructional guidelines for the return to learn process. Making online learning universally friendly is going to be an important thing to consider moving forward.
Becky Moran: Return to work often has a lot of different players and factors involved and each job is different. Good information is hard to find so passing along good information is very important.
Dr. Lesley Ruttan: Forms are often problematic to fill out for concussion patients and generally there’s a lot of them to fill out.
Connor Massimo: Social media and podcasts will be a good information dissemination tool moving forward especially when trying to connect with younger demographics.
The importance of people sharing their experiences – 50:50
Dr. Steph Dallaire: It gives a voice for all types of burdens that come with the injury because everyone’s experience is different therefore their struggles are different too.
Dr. Lesley Ruttan: It can help de-stigmatize the injury and the ensuing mental health struggles that can come with it.
Leslie Birkett: It can help people feel less alone. When people share their stories, they can provide hope and understanding of the different elements of the injury.
Penny Welch-West: Peer support is an important aspect of recovery, and it opens up ideas for therapy and treatment options. Often people go from mentees to a mentor role - this progression can be a sign of recovery and building a new normal.
Connor Massimo: Mental health in typical “tough sports” like hockey become challenging because extra layer of stigma is present within the culture of sport. Therefore, it becomes even more important to share experiences with the injury and the way people understand the invisible struggle.
How can we shape a collective narrative around the injury – 58:49
Penny Welch-West: Believing and validating the injured. Early reassurance in recovery is very Important to get people on the right path to recovery.
Dr. Lesley Ruttan: Education on the injury and the brain is an important part of helping people recognize the injury. For people with prolonged symptoms, helping them understand the interaction between the various symptoms and how they can impact the prevalence of long-term symptoms. Sharing information about the mental health side of the injury is another important area to consider.
Becky Moran: Making good info available to everyone. Trial and error regarding some treatments that don’t have the evidence even though the treatment still works. Evidence for some treatments take a long time to attain. Having a clear pathway for someone going through concussion would help everyone involved.
Dr. Steph Dallaire: Providing reassurance and a clear understanding of the recovery pathway is important. Concussions in first responder communities can be difficult to address and de-stigmatize.
Leslie Birkett: Advocacy organizations play a vital role in helping to shape the narrative for people affected by the injury. Star athletes and celebrity power like Sidney Crosby can impact the way people view the injury.
Connor Massimo: Taking a moment as the health care provider to reset your own mindset through various mindfulness practices can be extremely beneficial for you as the practitioner and the patient. Providing reassurance and a calming stability for patients can make a positive impact on someone’s recovery pathway.
Advice for someone with a concussion/TBI – 1:13:47
Connor Massimo: It’s okay to do things with concussion symptoms. There is a misconception that you cannot do things when you have symptoms. What matters is that when you do (limited/controlled) activity your symptoms don’t flare up too much.
Dr. Lesley Ruttan: Making small achievable goals, taking it a day at a time. Try not compare yourself preinjury and meet yourself where you are at.
Penny Welch-West: Graduated return to activities is a success not a failure. Release the urge to be back to normal right away. Being kind to yourself and understand that they are not alone, there are providers available to support people going through the injury.
Leslie Birkett: There is always hope in recovery, even when you are recovering from prolonged symptoms.
Becky Moran: The road ahead may be more difficult or different than the initial path but there are ways to keep moving forward! Changing language from I can’t to I can’t YET.
Dr. Steph Dallaire: Please reach out to your family physician and advocate for yourself with your GP. Don’t be afraid to present new ideas or treatment options that you have researched.
Resources
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