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This visit, I had the pleasure of meeting many new members.  When Brandon and I arrived, everyone was sitting in the kitchen waiting for lunch.  One of the staff member’s had made his specialty, baked pasta, and was not letting anyone help, which gave us time to talk with everyone.  Topics of conversation included the trip Chelsea* had just returned from, Aubrey’s* younger sister and discussing potential attractions at Granville Island that day.

After lunch, Jace* and Aubrey helped me hone my pool abilities.  When I say I’m not very good, I’m not being modest! I ended up winning the game only because Jace insisted that I get a Mulligan for each shot I spectacularly missed and helped me to adjust my technique.  Dakota mentioned in his first post how he had expected to assume the role of “helper” while at Headway but found the reverse. I could relate to this comment while hopelessly attempting to hit the cue ball into the ball I was aiming for, then watching my opponent effortlessly make each shot.  I greatly appreciated Jace’s and Aubrey’s patience.

Once at Granville Island, we enjoyed live music but sadly, there were no sea lions.  This week, Mack*, who uses a wheelchair, joined us for the excursion.  Having him with us really highlighted for me how inaccessible the Island and the surrounding areas are for wheelchairs.  This observation builds on what our guest speaker discussed; she had pointed out how Headway’s location can pose a challenge from cognitive standpoint in addition to being isolated.  On this walk, the terrain reminded me of the wheelchair obstacle course at ICORD; not all the curb ramps went flush to the ground or lined up with crosswalks, there were train tracks, uneven pavement, construction and even an open manhole. Mack seemed to greatly enjoy the outing and it is unfortunate that this isn’t something he would be able to do on his own.  While Vancouver has policies pertaining to pedestrian accessibility, not all of the recommendations are in place there.

I stayed for an extra hour to participate in music therapy.  After my brief exposure to it during my first visit and hearing Norika cover it in her facilitation, I was really interested to see one of these sessions firsthand.  The therapy student had brought many instruments, including drums, hand chimes and a qchord.

Hand Chimes (via wikipedia)

Qchord (via Flicker)
The video below (start at 1:00) gives you an idea of how it sounds and how it works

Shane* enthusiastically played whatever was within his reach and kept calling for people to hula dance to his beat, especially the only male staff member!  In addition to boosting mood, this therapy has been credited with helping to focus attention and increase engagement in treatment (Magee et al., 2011).  Interestingly, when it came to the qchord and the hand chimes, Shane was so excited to be making noise that he couldn’t stop long enough to learn the piece.  I wondered if he would have been able to more fully participate in the planned activity had the instruments been less exciting!

*Name has been changed

After my first visit at Headway, I was excited for the next opportunity and knew those initial feelings of unknown and nervousness were now long gone.

We (a classmate and myself) arrived at Headway just before noon, as lunch was being prepared. A delectable dish of pasta was taken out of the oven of which I could not resist trying. There were several interesting conversations over lunch. One woman had just returned from China last week. During her time there she worked at a factory making clothing and other products. While she enjoyed her trip, she continually noted how the weather was far too cold and unpleasant. She was certainly glad to be back home!

With about 20 minutes to go before our journey (walk to Granville Island), I had enough time to engage a member in a battle of billiards. However, I should probably retract that description: it was a massacre. I played with a young women who had earlier described to me over lunch how her left hand and arm were partially paralyzed. Nevertheless, she was confident in her ability to defeat me in pool. She was 100% correct. While playfully teasing my inability to sink a single shot (it was an embarrassing performance) she successfully cleared the table. I was thoroughly impressed by the fine motor control she demonstrated. You would not have guessed that one of her hands had partial paralysis.

After the debacle of pool I demonstrated. I think this will be the next book I purchase.

We departed for our walk at 1:00 pm, with the task to return to Headway with some hand sized rocks that would be used for painting and decorating later on. The walking club at Headway is somewhat spread out. Some of the members like to lead the charge, leaving others about a half block behind. I spent the majority of my time in the front with a gentleman who takes almost every opportunity to join the walk on Wednesdays. This got me to thinking what kind of rehabilitation potential does walking have on TBI. Williams (2013) discusses how those suffering from brain injuries may be more likely to return to work if they regain the ability to walk confidently and effectively. The study also discusses how walking parameters may be good indicators for if the TBI patient will be able to engage in running or other high mobility activities. Walking is an everyday occurrence which everyone takes for granted. It involves a complex integration of neuromuscular control, respiratory congruence, and cardiovascular balance. A good walk: has been recommended as a therapy for symptoms like depression, confusion, and anxiety; encourages physiological harmony; and promotes overall health and wellness. Even the opportunity to journey and wander can work marvels for an individual. That’s why I was so glad that one member, who uses a wheelchair, decided to join us.

We all enjoyed the wonderful weather at Granville Island, and made sure we found plenty of rocks before returning to Headway.

My second volunteer experience at Headway differed vastly from the first. With only a few members present, lunch was a straightforward, yet enjoyable affair. Upon entering the center, I was enthusiastically greeted by Ms. X, who I had not previously met. Her friendliness to a complete stranger such as myself was encouraging and refreshing. In the downtime before panini-making commenced, I sat and conversed with Ms. X and another member. Ms. X was quite forthright and very quickly began to tell me her story. As a young child she had sustained her acquired brain injury (ABI) from cancer, the impacts of which remain with her decades later. Despite difficulty enunciating and verbally expressing her thoughts, she remained astutely aware of this, even telling me at one point that she had poor short term memory. Imagine my surprise when she pulled up an online game of Backgammon and whizzed through it, explaining to me the rules and her strategy. This individual, who had been described to me by other members as having poor memory and attention (even forgetting how to get back from the washroom) demonstrated an ability to use working memory to plan, strategize and process numbers and scoring.

Many of my science courses emphasize treatments that are pharmacological in nature; however, medication comes with side effects and variable outcomes. I began to contemplate the concept of alternative therapies, as previously presented in class. Perhaps this game, or others, may have provided some method of informal cognitive neurorehabilitation.

Indeed, therapeutic effects of video games have been found on the physical, cognitive and social functioning of ABI patients.  Kloet et al. (2012)  tested the use of the Nintendo Wii  in children, adolescents and young adults with ABI, finding significant improvements after 12 weeks in attention, information processing speed and tasks requiring working memory and visual-motor coordination. Promising – but one must keep in mind that games played were tailored to achieving the individual goals set, and played in the presence of physical therapists, occupational therapists and neuropsychologists. While conclusions may not necessarily be generalized to casual gaming without additional rehabilitation, the benefits of alternative therapies are numerous. Despite Headway’s relaxed, non-clinical atmosphere, it seems well-equipped for simple routines, prompting me to think that possibilities for improving physical and cognitive function lie in even the most informal of set-ups.

What hidden benefits might a few rounds of billiards hold?

Headway’s vast array of art supplies made me ponder the potential and effectiveness of implementing art therapy sessions in some rehabilitation centres:

The benefits of art therapy are extensive, including relative inexpensiveness, greater entertainment than traditional therapies and self-expression that transcends aphasias or communication barriers.

Perhaps foosball with additional regimens of conventional rehabilitative therapy could aid visuomotor skills and coordination.

Even if regimented therapies are not instilled, it’s wonderful that Headway has all these amenities available, and fascinating to see members learning and improving skills in a casual context, having fun all the while.

Before breakfast, I asked a member what activities he liked the most at the Headway Centre. To my surprise, he replied, “I love doing the dishes.” I expected to hear lively descriptions about the popular activities at the centre. Then, he commented that I did not recognize sarcasm. I thought this was amusing because one of our class discussions and a journal article by Sullivan and Riccio (2010) explored the topic of language deficits pertaining to the misunderstanding of non- literal speech such as sarcasm and slang following a TBI. Later, a staff member explained to me that I would know that I fit in at the centre when the same member would make jokes about me. The member replied that we would know that I fit in at the centre because I fit through the door. I laughed and thought that was a humorous literal observation.

I noticed the openness and trust that the members have with the staff and volunteers. I had a conversation with a member who was fond of playing pool. He explained to me that he had experienced an aneurysm and had lost most of his eyesight. Playing pool helped him to train his eyesight and some of the areas of his brain to compensate and was an activity for enjoyment. I thought his method of using a hobby as a form of treatment was very beneficial for his health. This is relative to the class discussion about methods of treatment and how a physical therapy can be more appropriate than a pharmacological therapy in some cases.

As a comparison to playing pool, here is a video from World Health News showing visual therapy methods using electronic lights and prisms.

I stayed after breakfast to participate in a musical singing session lead by one of the members who played the piano and his friend who sang the lyrics. From our last class discussion, music therapy was mentioned to cause constant cross hemisphere communication and an immediate increase in mood. During the singing session, I noticed a bit of anxiety from the members because they were shy or needed assistance in reading the lyrics. However, positive encouragement came from the staff to motivate the members to sing and read the lyrics. I think this was a valuable activity for social bonding, rehabilitation of speech disorders and emotional expression.

For further explanation about music therapy, I would like to share this Tedx lecture from a doctor and muscial therapist elaborating on the value of music for infants, autistic individuals, and traumatic brain injuries.

If anyone is interested in reading about music therapy, I read an online book named “Music Therapy and Traumatic Brain Injury: A Light on a Dark Night” by Simon Gilbertson and David Aldridge (2008). The book emphasizes that “[b]reathing is a central principle in communication and healing, and forms the basis of so many therapeutic disciplines that we would perhaps be advised to encourage our clinicians towards their breath and away from their machines.”

Before attending Headway, I thought I had an idea of what my experience would be like. I imagined a large resource centre filled with staff and members busy participating in multiple activities. I expected to immediately join the Walking Club, and help out by following a staff member’s instructions. Instead, I was surprised to see that the atmosphere at Headway was much more relaxed and welcoming than I had pictured.

When I arrived I was greeted by the members, who were busy making themselves lunch and conversing with their friends. I was invited to join them, and after a short introduction I engaged them in conversation and tried to learn more about each member.

The first member I met was very witty, and enjoyed making himself and others laugh. It was clear that he took pride in coming up with these quick remarks and comments. He had a keen interest for the music therapy sessions and explained how each of the instruments worked and what they were supposed to sound like. He declined from going out with the Walking Club, saying that he didn’t want to “waste his time walking around”. I managed to meet up with him again after the walk and was glad to talk with him more.

My second interaction was with a young woman, X. At first she seemed rather reserved but after I showed an interest in talking with her, she really opened up. She shared a lot of her past with me, and showed me a plate she had painted in Art Class. The plate portrayed the dogs she had owned throughout her life. It was clearly a topic that she was passionate about, and we were able to bond over our pets. She seemed pleased with the weekly excursions to Granville Island with the Walking Club, and promised to show me around.

As we set out, I got to know X much better. She opened up about her accident, and told me about her struggles with the medical system and rehabilitation process. For years, she struggled in pain because doctors dismissed her complaints. Finally, she received the surgery she needed and went through an extensive rehab program in order to walk again. She told me how excited she was that she could finally begin work again and to start her first shift at a new job the next day. It was an incredible story to listen to, and I hope to talk with X more the next time I am at the centre.

Throughout the course, we have discussed a range of outcomes following traumatic brain injury (TBI). I realized that prior to visiting Headway, my notion of what the members would be like was heavily influenced by our discussions in class. I assumed that there would be some apparent physical or cognitive symptom that would help to identify a member as a survivor of TBI. This, however, was not the case with many of the members at Headway.

I read further about public understanding and misconceptions about survivors of TBI in the article by Linden et al. (2010) (one of the course readings from a couple weeks back). I found that I related to many of the findings in the article, especially the responses to the question “how could you tell if someone had a brain injury?”. I realized how much I had initially been looking for “identifiers” amongst the members at Headway, and am glad to say that by the end of the session it barely crossed my mind.

I was quite surprised with how capable and comfortable everyone was, and truly enjoyed the well-established sense of community at Headway. This sense of community allowed for the fun and relaxed atmosphere which was present throughout the duration of the activities. Volunteering at Headway was truly was an eye opening experience, and I look forward to my next volunteer session.

I started volunteering at Headway in May 2013. Activities-wise, I usually help with the art classes and music therapy or accompany the members on the walks to Granville Island. I wish to share with you three things I’ve learned at Headway that changed how I understand brain injury.

1. Focus on empowerment for healing

We’re accustomed to view individuals with brain injuries as being disabled and somehow less than everyone else. But you never see that we feel sorry for you vibe at Headway. Everyone, including the staff, is seen as equals. No one is being treated or “fixed” for their impairments.

Instead, Headway aims to provide social support and empower members to set/work towards their personal goals and live the best life that is possible for them. This may sound abstract and cheesy, but it’s not all just talk— we follow up! In fact, Headway uses software called ShareVision to document personalized member goals and track individual progress. Below is a short descriptive video of this program.

2. Dramatic fluctuations in mood states

Perhaps most striking is seeing how differently a member can behave from the week-to-week that I volunteer. For example, I work closely with a member who is on most days gentle and polite. We would play Wii Golf and laugh whenever our shots would land far from target. Other days, this member would be aloof and irritable. On these days, he would curse loudly whenever he did not make a good shot in Wii Golf.

The changes in this member’s mood is so severe that I often feel like I’m talking to someone entirely different. (Image via Wikipedia)

Connecting this to our class discussions on assessment, I can appreciate how difficult it is to gain an accurate clinical picture of a patient’s condition. A study by Chamelian et al. (2006) found that TBI patients with depression do worse in measures of memory, attention, and executive functions. The current convention of conducting neuropsychological tests in one long day clearly isn’t ideal, but neither is overwhelming patients with tests too frequently. I wonder what the right balance is.

3. Prominence of social factors

One of the most emotional experiences I had volunteering was a conversation I shared with a stroke survivor. She was telling me how the most difficult part of her brain injury is not dealing with her neurological impairments. Rather, it was the crushing guilt of being a burden to her family. For a long time, she told me how she painfully hated herself for needing to depend on her family for financial support.

Her story was on my mind during Jessica’s facilitation on how TBI can affect social dynamics. Clearly, these social changes (besides physical symptoms) can also have profound effects on an individual’s well-being. These factors are an important part of case management. When I sat in during rounds at Langara hospital, functional/social status was a very important part of the meetings (see below).

 Discussion at Langara Hospital Rounds

This was the question that was floating on my mind while I was heading to the Headway Centre.

First, as a center: there’s a bright and dark side to the institution model from the perspective of the user. In one hand, centers are usually better prepared and count with more resources than probably would be accessible to the person otherwise, in one centralized location; users can socialize and get to know each other with plenty of time. On the other hand, institutions are often the only option. Some persons may not necessarily want to go there, but when  find themselves in need after an unfortunate event, going to an institution may effectively be the only way to get certain service (e.g. palliative care, mobility assistance). On top of that, centers are often run by efficiency concerns: sometimes they fall into high ratios of users per staff, limited privacy, activities and services being scheduled and not up to the user’s will, and the user may feel forced to socialize with or when they don’t want to. Alienation may occur if the user tries to facilitate how things operate, putting himself, his autonomy and agency last for the common good. This is a pressing issue when instead of being a temporary situation (e.g. hospital, drug center) the user has a profile that makes that likely to be a long-term situation –e.g. older adults, persons with intellectual disabilities, terminal illnesses, and maybe TBI survivors.

Second, what is rehabilitation for TBI? As far as I’m concerned, there’s not much known about which exercises or therapies may help recover function. On top of that, TBI survivors have a very heterogeneous range of abilities and impairments, so it was hard to imagine which group activities may be conducted and how could they lead to a progressive recover of function, if such thing is possible.

I was thus curious how the Headway Center would deal with these concerns.

After being there, my impressions are positive. The centre is rather small, and run in a drop by basis when they wish –-like a place where to hang out! There’s no obligation to participate in particular activities; and users have some degree of active role in, for instance, taking care of the common areas, making a tour for new volunteers like me, providing input, and especially caring about one another. This makes it feel like it is not only Headway’s, but their center, and they made one in which the environment feels very positive and welcoming, a safe space. I believe the staff contribution has been essential to get to this. As for rehabilitation, I think there must be something good about keeping oneself busy with different activities, especially if perspectives on finding a suitable employment are limited.

I wonder if there are other centers for TBI survivors, and how they operate. Does anyone know?

As I walked down the narrow hallway leading toward Headway Centre, I began wondering how such a large centre was located on the third floor of a mediocre sized building. After many discussions and lectures on the importance of brain health and rehabilitation after a TBI, my preconception of the Headway Centre was that it would be large, filled with members, and have a variety of staff and resources. My first step through the front door left me surprised and confused. Rather than the formal ‘treatment centre’ I had imagined, the entirety of Headway could almost be seen with one turn of the head, and had a more homely feeling.

After taking a few steps inside, I was greeted and introduced to all of the staff and members who were currently having breakfast. My earlier confusion remained with me as I found it difficult to completely differentiate all of the staff from those who had suffered a TBI. However, instead of seeing this as a problem, I now realize that it was better that I did not know. Stigma is something that can inhibit the well being of people suffering from TBI, whether it is intentional or unintentional (McLellan et al., 2010). My early inability to identify who was suffering from TBI allowed myself to more easily interact and have conversations with everyone as casually as possible.

During breakfast I had the opportunity to individually meet and talk with each member. From these conversations, their disabilities from TBI became more apparent. In particular, one of the members had difficulty producing comprehensible speech. From class discussions, my first thought was that it may be due to damage to Broca’s area, since he seemed to have no problems understanding what was being spoken to him.

Broca’s Area
via Wikipedia

However, this assumption was soon casted aside when this member wrote down a question for me on a piece of paper with little difficulty. This member, along with many other members who superficially only seemed to have emotional inhibitory difficulties made me realize how complicated it is to categorize the extent and symptoms of TBI. Things were not as clear cut as the literature made it seem to be. The range of cognitive functioning and how it affects one’s life was very humbling and was something that I would not have understood until my experience at Headway.

Later in the afternoon, it was finally time for bingo. At this point I was quite familiar with the members who decided to join the tournament, but I still felt a little nervous. I was uncertain of how fast I should be calling the numbers due to the wide range of cognitive abilities, and at the same time I was responsible for making sure one of the lower functioning members was correctly playing the game. By the end of it, the game was going very smoothly and I found out just how competitive bingo could be.

Overall my first experience at Headway was surprising and gave me much to think about. Headway was a small, but wonderful place that gave members a place to meet and hangout. This community brings a positive atmosphere that seemed to benefit the members greatly. From the response of the members and staff when it was time to say goodbyes, I think that I did a sufficient job in maintaining this atmosphere and can not wait to go back.

Visiting Headway for volunteer work during their art class was a very interesting experience. I wondered if just one visit would be enough to have any meaningful insight into what it means to live with the consequences of a brain injury. When I got there, a member of the staff showed me around and introduced me to the attendees who were there at the moment. Soon I realized that even short first interactions with the people who were there were enough to get some insight into the struggles they may have to face in their daily lives.

One of such interactions was with a man who had a language impairment that made it difficult for him to express himself clearly, but that surely didn’t keep him from welcoming me at the center. While some impairments could easily be linked to head injury, I think other consequences of TBI may not be easily appreciated by unaware observers, as they interfere with inhibition and a sense of what is appropriate to a given social interaction instead of a clearer cognitive deficit such as something related to memory or attention. One example is one attendee who was very playful when shaking hands. I wonder if someone who is not aware of his condition might understand his particular way of greeting others. I also noticed that, even if brain injury was apparent for some of them, others didn’t seem to have had that kind of injury at all, and for most of the time only they must be aware of the occasional cognitive challenges they have to face.

The art class was very suiting for me to be able to talk with the people who decided to participate in it. I had a nice conversation with two of them, and they talked about their families and their hobbies. One of them explained to me that she really liked swimming, and that she would do it more times a week if she found a volunteer to help her at different times. She also spoke of the job she had and the goals she have for themselves in the near future. From that conversation it was possible to have an idea of how they had to accommodate their lives after the injury, and that they have a direction of what they want to do when they experience some improvements.

The art class was also good to see that different attendees asked for different kinds of help, reminding me that after head injury people can have very different impairments. Some needed no help at all creating their Valentines Day card, while others could only give instructions to their volunteers about how they wanted their card. One of them wanted to write something on their card, but was having difficulty with it and asked me to write what he wanted. This suggested difficulties with fine motor coordination or with language.

I was surprised at the amount of details and interactions I had at Headway for this first visit. I had the opportunity to see some of what I only saw in class, such as the variability of impairments people face after TBI, and that it may not even be noticeable to a lay observer. Talking to the people there I was able to better appreciate that TBI is an event that changes a life, but that being motivated and taking their time to adapt, TBI survivors can find their balance again and lead enjoyable lives.

Fragments of conversation drift lazily past my ears as the bus rolls steadily along Broadway. “Did you see my Facebook status? 26 likes!” “I worked 50 hours this week.” “This jacket? 85 bucks.” The ebb and flow of words lap softly against my cheeks. A tide teeming with numbers and quantifiers – how strange it is that we choose to measure our lives in abstractions. As I glance haphazardly at my phone to check the time, I realize that I myself am a slave to symbols, and I ponder whether there are more fulfilling ways to evaluate the moments that make up our days. Unfortunately, the bus pulls into my stop before I can come up with any sort of satisfactory answer. I exit the tangle of human arms and legs as hastily as I can and make my way toward the Headway center.

I glance through the open doorway of the computer room and am greeted with a toothy grin that spreads slowly under a crown of lemon-hued hair. “Are you my buddy?” I inquire of the young man sitting in front of me who has since turned back to his game of Solitaire. He spins around in his creaky chair and holds my gaze. “Ya. I guess I can give you the tour.” We work our way methodically around the small space and I take note of the pride he attaches to the paintings that line the back wall and the obvious enthusiasm he radiates when he affirms that they have Netflix. As we arrive at the most popular attraction (the kitchen of course) a vibrant Hawaiian shirt steps into my path. Without prompt or ample warning, I find myself in the midst of a complex handshake that I desperately attempt to fake my way through. A curt nod and narrow smile indicate I have passed this entrance exam, relieved, I flop into the nearest chair and wait eagerly for breakfast to be served.

The rest of my visit at Headway was filled with delightful conversation, pancakes, and a heated debate over whether it was Eddie Murphy or Will Smith who played the donkey in “Shrek” (note: it was Eddie Murphy). Centers like Headway are important institutions for people recovering from a traumatic brain injury (TBI). They foster a sense of community, safety, and a chance to build a support network that otherwise may be lacking. It’s essential to keep in mind that the symptoms of TBI are heterogeneous, not always obvious, and do not define the intellectual and emotional capabilities of the survivor. I believe the greatest benefit of my visit was simply providing fresh ears and a novel laugh to soak up the stories and jokes of the members. As for me, I finally came up with an answer to my earlier query – how best to calibrate the value of moments if not in numbers? I learned to measure my day by the taste of pancakes, the intricacy of secret handshakes, and the simplicity of smiles.

A short video highlighting the importance of community during TBI recovery.