Sarah: Welcome to episode 10 of Diversonomics - the podcast about diversity and inclusion from Gowling WLG. I'm your co-host, Sarah, practicing in commercial litigation and professional liability in the Gowling WLG Ottawa office.
Roberto: And, also in Ottawa, I am your co-host, Roberto, practicing in municipal law. Today is the first of two episodes as we tackle a topic that I've learned a ton about in the past few years, and which has been in the news, significantly, and that is concussions. Specifically, what are the symptoms and what can be done to accommodate people who suffer concussions and try to return to the workplace.
Sarah: Our first guest is someone that has been very inspiring. She's a long time professional at Gowling WLG and through her efforts, the University of Ottawa Brain and Mind Research Institute has started the "concussion injury group". We welcome Jane Clark.
Jane: Thank you. Happy to be here.
Sarah: So, Jane, can you tell us a little bit about your career, where did you start and how did it progress?
Jane: Sure. I joined Gowling WLG almost 30 years ago as an articling student. I became a partner in 1996 and since then I've held a number of management roles, including as IP department head in Ottawa, and leading the firm's China Initiative and Life Science Industry Group.
Sarah: And, what was your area of practice?
Jane: Our firm has a top tier IP practice that I was privileged to be a part of. I had amazing mentors. With a bio-chem undergrad, my main focus was patent litigation. In this practice you spend time with the world leading experts in interesting disciplines, from plant bio-tech to blockbuster medicines. I enjoyed a number of national and international rankings such as Lexpert, Best Lawyers, Who's Who Life Sciences and LMG Life Sciences. It really was an exciting and rewarding career. I use the past tense because after sustaining a concussion four years ago, I've been unable to resume my practice.
Sarah: Can you share with us a little bit about your experience with the concussion?
Jane: While the majority fully recover from a concussion, there is a group termed "the miserable minority" - where disabling symptoms persist. Unfortunately, I'm a member of that group. There's an expression about the uniqueness of this injury: "If you've seen one concussion, you've seen one concussion." That is true in my experience, but there are some common symptoms and common net impacts.
Sarah: And what would some of these common symptoms be?
Jane: Those with persisting symptoms often share three issues. The first is attention deficits. This category includes the inability to multi-task and abnormal distractibility. The second is slow processing and the third is fatigue, which is a cognitive fatigue as opposed to a physical fatigue - although you may have that too. The cognitive fatigue is where your brain literally shuts down when you push too far. You can no longer move, think or speak. The expression is "you're running out of gas or energy points". The term "Brainbucks" is used in a book by Dr. Gail Denton.
Sarah: How does this condition affect daily activities?
Jane: The net impact of these chronic and concurrent multiple symptoms is a dramatic functional impairment. Basic activities become daunting tasks and require inordinate effort. There's no longer an automatic mode. Suddenly there are several confusing steps for something you never gave a thought to pre-injury. Ordinary environments are overwhelming. Auditory, visual and vestibular deficits make integrating multiple stimuli in real time difficult. There's a seeming disconnect with resulting dizziness, nausea and other symptoms. There are challenges in sustaining anything. Counting and rationing the limiting energy points becomes a way of life to manage the fatigue, and constant planning is required.
Sarah: What was your rehab experience after your concussion?
Jane: There is a struggle in accessing care. Patent litigators will be familiar with the confusion that exists in the early stages of the developing art. There are controversies, competing theories and missing puzzle pieces. Concussion treatment is still in this early stage. I mean, you know it's bad when even the experts can't agree on a definition as is the case for concussion. There's a great deal of ongoing research in multiple directions, but a great deal more is unknown. Promising tools that are available to researchers, such as specific imaging tools, are not generally available yet in clinical practice.
Sarah: So, with such differences in the way individuals are looking at concussions, or treating concussions, how are concussions typically treated?
Jane: That is one of the controversies, you know - to rest or not to rest, and for how long - among other things. But when active treatment starts, another layer is that symptoms are generally treated separately, each with its own targeted rehab, which brings into play many different specialists and therapists that each focus on a particular symptom. As with anything, the more elements in play, the more complex it is which is not ideal when the person undergoing and managing it is compromised with a brain injury. That said, there is solid guidance in the form of evidence-based practice guidelines and there's also excellent care available; it's just… to access it, you have to navigate four real barriers.
The first is to find the right expertise. Then, once you've found it, there are lengthy wait times and that's measured in months and even years. You also need a source of private funding for the physician and guideline recommended therapies, like vestibular physiotherapy, vision therapy, occupational therapy and the tools like prism glasses - all of that needs private funding. Then you also need to coordinate the care from all of these different professionals.
Roberto: So, the University of Ottawa Brain and Mind Research Institute, what is it?
Jane: It's Ottawa's largest collection of basic researchers and clinician scientists. They're focused on brain and mind-related health. The institute helps coordinate research of its member institutions, and the research does make a direct impact on patients.
Roberto: So, it's a wonderful organization but I know a few years ago they didn't have a concussion injury group, so how did you get them to start one?
Jane: This is a story about how individuals can make a difference and at the same time the strength in numbers… The individual is Dr. David Park, Director of this institute. He's a busy professional with multiple other positions, including as an Ottawa U prof and a prominent researcher in Parkinson's disease. He saw a letter of mine that was published in June 2015 in the Ottawa Citizen and it was outlining the bewildering difficulties with accessing concussion care, and he stepped up. He reached out to me and with the help of the concussion community - we call ourselves "Ambassadors" and include patients, caregivers and providers - a group was formed that also includes concussion clinicians. The group's run by Dr. Shawn Marshall. He's a distinguished and award-winning concussion expert from the Ottawa Rehab Centre. He's also the lead author on the practice guidelines for treating those with persistent symptoms, and that guideline is currently undergoing a revision for a third edition.
Roberto: What does the group do?
Jane: The group ultimately settled on supporting three research goals. The first is improving timely access to care. That's the "eliminate the wait" campaign. The second is predicting whether the injury will lead to chronic impairment that would help with early identification of those who might be in the miserable minority and then try to shift that outcome. And the third would be understanding optimal timing for engaging in or resuming activity such as return to work.
Roberto: Right. And you've got together Dr. Park and Dr. Marshall and this wonderful group but they've got ambitious goals.
Jane: We are fortunate to have in Ottawa some world class concussion expertise and state of the art equipment and facilities. They make these goals realistic. The concussion injury group has already had success helping clinicians win grants for research that furthers these goals. The biggest hurdle - and it's no surprise - is additional funding for specific projects. Our fundraising subcommittee focuses on attracting further charitable donations for this research.
Roberto: Yeah, I know we were able to support the campaign, a little bit at least, with our Jeans Day recently; and as a member of the concussion injury group I know that's an important goal. How do the members meet?
Jane: That raises a practical point. With concussion patients there are logistical challenges for duration, subject matter and environment of meetings. We do have in person meetings with a phone-in option for an hour every two to three months, but there are challenges with selecting rooms that minimize noise and that have lighting options. Agendas are circulated in advance. You will see hats, sunglasses and ear protection at the meetings and participation typically aggravates people's symptoms. Despite this, patients continue to participate and contribute to a compelling strength as a group.
Sarah: That's fantastic. Do you have any advice for employers when they have employees dealing with concussions?
Jane: Yeah, concussion is an excellent example of having a turtle be victorious instead of the rabbit. There's not a lot of room for speed. Some key rehab principles useful in all concussion rehab are also used for returning to work and they involve a graduated integration, pacing, breaking tasks down into simple steps and conquering them one at a time, conditioning, routines and optimizing the environment.
Sarah: And practically, how would these be implemented in a work place?
Jane: It's helpful to work with an occupational therapist familiar with brain injury. Their training helps them troubleshoot, create workarounds, and as needed, come up with compensatory strategies. They can prepare a plan that will typically set out a graduated return schedule that's geared at building tolerance in both duration and scope or level of activity.
Sarah: Can you give us an example, even for a lawyer, for example?
Jane: For a litigation lawyer an activity could be to observe a court proceeding for a few minutes. This is repeated until that activity no longer aggravates symptoms and the lawyer is able to understand what is happening in court. It's important not to lose sight of that second component - the comprehension. When physical symptoms are aggravated, which is often the case when you're exposed to a new activity or new level, they tend to dominate and they can mask the cognitive issues. Even without a brain injury, it's pretty hard to follow what's happening when you're experiencing intense physical symptoms such as dizziness and nausea.
Once the physical symptoms are under control then the cognitive status is easier to assess. The next step is either building in more time or adding a level. For example, note-taking while observing in court. You do need to be prepared for surprises. For me, the first thing I found in attempting to observe a court proceeding was that I had difficulty crossing the street from our office to the court house. Something I didn't appreciate as a hurdle until I went to do it. I was with my occupational therapist at the time, who consequently added another step to my plan to condition to traffic by walking a few minutes on busy streets every few days, building up to every day - initially with hearing protection and eventually without. An added level in that scenario could be conversing with someone while walking. Whatever the activity is, mastering it requires breaking it down, starting at the first doable level and then gently taming provoked symptoms. You have to build level by level with frequent repetitions. How long this may take for any particular activity is variable. It can take days to months, and it does require dogged perseverance.
Sarah: Yeah, I can imagine. How do you determine the right levels of activity for a returning employee. Like, where would you start, I guess.
Jane: This is a critical question and tricky, indeed. It really depends on the individual and where they are in their recovery. Finding the right level is a process of trial and error and errors can cause days of aggravated symptoms requiring rest in a dark room. I call that "cave mode." You need a whole new scale of measurements, concussion scale, which is magnitudes tinier than anything contemplated pre-injury. When you're first starting to condition to an activity or new level, the duration is often measured in minutes and if that's too much, you go down to seconds. One of my therapists put the right level measure as being able to recover back to baseline within 30 minutes after engaging in an activity. Pushing too far, too fast or starting at too high a level is all counterproductive. Rushing unfailingly results in setbacks. Seemingly resolved symptoms will reappear and you end up back in the cave and rebuilding from there.
Sarah: You mentioned pacing. What is that?
Jane: Pacing is a key concept in concussion rehab. You need to pace activities and events with breaks before, during and after. So, for example, if you're working for 2 hours your plan will likely include 5-15 minute breaks within each hour, where you stop what you're doing and rest. Both the quality of the work and the level of symptoms in the second hour will be much improved with a pacing break. It also means pacing activities so before a taxing event you rest and again after. Pacing can also involve alternating activities - so you'll move from a thinking activity to a doing activity and then to a rest break. I can say from repeated experience that pacing is a difficult technique to implement even though it sounds easy. There's this natural pull to carry on and complete something while it's in front of you. Regrettably, the one touch efficiency rule is no longer your friend. Appropriate pacing usually means several sessions with extra time to re-familiarize yourself and pick up where you left off. And that same pull happens while you're improving; you start feeling better and think you can leap several levels - that you don't need to go such a measured way. But for those with concussions, as tedious as it is, resist the urge to push through. There is no second wind. If you succumb to that pull, your brain pushes back with the result that the work done while you were pushing through is unlikely to be useful and you've now lost the rest of the day, or longer, with aggravated symptoms.
Sarah: And, what are some of general characteristics of return to work activities?
Jane: Activities that are repetitive, predictable and without deadlines are best suited for concussion. Surprises, unscheduled activities or stress are best avoided. If meetings are moved, location or time, try to give as much advance warning as possible. At the same time, in accommodating the employee, be flexible in adjusting scheduled meetings and hours, since aggravated symptoms arise as part of the rehab process and they're really an inherent part of this condition, when trying to engage in activities.
Sarah: And, what about the environment?
Jane: Optimizing the environment is critical. It can make or break the ability to engage in an activity. Auditory and visual processing deficits seemingly result in a lack of filters for imbound stimuli. Sound, movement and lights flood in, in what seems like a raw state, so that ordinary environments can seem like being in a mosh pit of a rock concert. Your brain is not efficiently tuning out information. It's not working well in assessing what is and what is not important. So, every sound and movement registers and thus, your brain is very quickly overwhelmed. The employee should be set up in a low stimulus space, free of distractions, with the ability to adjust lighting. Fluorescent lighting should be turned off where the employee is located and replaced with a desk lamp. Placement of phones, printers, etc. can make a significant difference. Being cognizant of the time of day is also essential. If the employee is better earlier in the day, build - at least initially - around that time.
Sarah: And, you mentioned the lack of an inbound filter. So what about outbound filters?
Jane: Yes. There can also be a lack of a filter in expressing thoughts so that sometimes thoughts that would be better left unsaid or put more constructively can be blurted out and they can seem inappropriate or irritable.
Sarah: What about working from home in a return to work plan?
Jane: This can play a valuable role. Working from home avoids the energy drain associated with getting dressed for work, driving, parking, walking from the parking lot through busy mall corridors and taking the elevator. Elevators are supreme point burners. And, part of the injury is that everything takes points so working from home leaves more energy for engaging in the vocational task. There is, however, a conditioning aspect of coming into the work place so it is a balance.
Sarah: That makes sense. And so, what should the employer expect?
Jane: In the process, expect that it will proceed slowly with hiccups. As our discussion highlights patience, flexibility and support helps gear towards a positive outcome. The outcome itself though is tough to predict. The uncertainty is frustrating for both the employee and the employer. On the plus side, often the initial attempts to return to work are within the first year. At that point the injured person still expects to fully recover. Statistics are on their side. There's a good chance that even if symptoms persisted beyond some initial expected recovery times, they'll see ten days, one month, three months, those are all milestones seen in the literature - they can still escape the miserable minority sub clause by the end of the year. One year seems to be the latest finite milestone, in the literature, although improvements do continue to happen beyond that time. All that to say, a proper return to work is viable and worth the effort for both the employee and the employer.
Sarah: And of course employers have a duty to accommodate in assisting employees returning to work. But apart from this legal responsibility, what other benefits do you see?
Jane: The benefits of diversity inclusiveness apply equally to including those with physical and cognitive challenges. More points of view not only strengthen an organization, they result in better output - and I know you've covered that in the previous sessions you've done. In addition, the literature discusses the enhanced productivity that comes with a positive corporate culture. There will be no more loyal employee than one who has been fully supported through a trying situation. Let me take a moment to say that Gowling WLG, the partners, the management and staff, all went above and beyond in their support for me. My OT comment is that she had never seen anything like it. It was a really bright spot in my recovery journey.
Sarah: That's wonderful to hear. So for those who have suffered concussions do you have any advice?
Jane: Yeah. Build up for a rollercoaster ride through thick fog. I wish I could be happier about it but it is an arduous slog and I can say though, on the positive side, you will make progress. It will get better and even if you ultimately do not track to a full recovery, rehab, including vocational rehab, will expand your functional abilities which make a significant difference to your overall quality of life.
I guess I would leave you with five coping tips for that ride. The first is to seek appropriate care as soon as possible. If you live in an area with one of the specialized concussion care centers listed in the practice guidelines, get a referral… as soon as possible. Number two would be to delegate everything you can. If you're in a position to do so, hire help for around the house, like cleaners and snow removal; enlist family members for shopping, cooking and other day to day activities. The third would be try to look forward, not backwards. Remember that baby steps are still steps in the right direction and over time they add up to giant steps. The fourth tip would be you're not alone. Reach out for help to your local brain injury association. They can put you in touch with peer support groups and other resources. And finally, if you're feeling overwhelmed, you can always find inspiration in others that put your own issues in perspective. My hero is Jonathan Pitre. He is the butterfly child who unfailingly demonstrates courage and grace - notwithstanding his painful and life threatening skin condition. His positive approach focuses on what he can do rather than what he can't, with astounding results. It's a good lesson and a winning approach for those living with disabilities.
Sarah: Thanks so much Jane for being here with us today.
Roberto: And listeners we are looking for your involvement. If you ever have any questions, comments or ideas for topics and guests please look us up at gowlingwlg.com and get in touch with us. We'd love to hear from you. Also make sure to check out the show notes for this episode at gowlingwlg.com/diversonomics10.
Sarah: And last, but not least, make sure to subscribe on iTunes so you don't ever miss an episode. And while you're at it, leave us a review and let us know what you think.
Roberto: You can also follow me on Twitter @robaburto and if you want to learn more about the University of Ottawa Brain and Mind Research Institute and its concussion injury group, their website is uottawa.ca/brain.
Sarah: Diversonomics was presented to you by Gowling WLG and produced by Jessica Bowman.