ASTU 400T Course Blog

I am going to start by saying that I had some pre-conceived ideas of how I thought someone with TBI would act, many of which did not prove to be true. This seminar put me in this state of mind where I pictured every individual with TBI in a non-communicative and vegetative state. Throught the class we talked about mild and moderate TBI, which I know are less severe, nonetheless I was stuck on this idea that it would be tough to interact and communicate with the members.

I was apprehensive about my visit, but this tension quickly melted after the members and volunteers warmly introduced me to their space. During the first 30 minutes of my stay, there was only one member at the center. This allowed me a unique opportunity to simply chat with the member in the kitchen while enjoying a cup of coffee. The member was extremely positive, and full of practical advice. I had some an idea in my head that I would be the leader, role model and helper, but this was far from the truth. Member X, ending up being the role model, giving me advice on topics ranging from traveling, to post-graduate choices. This woman let me into her life, showing me pictures of her Children and grandchildren just as any proud grandmother would.

I chose to participate in the Yoga class due to my interest in physiotherapy and exercise in general. It turns out yoga is not the “in” thin to do at headway. It ended up being just one member and myself being lead by an adaptive yoga teacher. The activity itself was very calming; all of the stretches were done in a chair, with a focus on ridding your body of stress while concentrating on deep breathing. During my research for my presentation it became evident that there is lack of exercise and activity opportunities for TBI survivors, so it was awesome to be able to experience and benefit from one of the existing programs. I would advise everybody against the yoga sessions for the simple fact that yoga is entirely about “yourself”, which gives you little opportunity to interact with the members. Nonetheless, Adaptive yoga was a fun and positive learning experience.

I had the opportunity to chat with other members following the yoga session, during this time it became evident that headway was truly a “hangout”. The differences in presentation of disability became evident to me during my remaining time, but regardless of differences in impairment, everybody was there for the Headway community. It was an awesome opportunity to be welcomed into such a unique space, and I cant wait to go back and “hangout”.

When I arrived at Headway, Maxim* was preparing lunch, Aalbert* was chatting with him and Shane* was crocheting a hat for himself. This relaxed, homey atmosphere was a big departure from my past volunteer experiences where therapists from various disciplines run the programs and therapy is the primary focus. This facility’s approach is very interesting; while members practice and strengthen their skills, they are in charge of what they do and rather than having therapists oversee the progress, they assist and correct each other.

Prior to walking club, I had an hour to meet and talk with the members. Something that surprised me was how welcoming the members were towards me, complete stranger up until I introduced myself. For my facilitation, I read several papers, including Phelan et al. (2011), which discussed the stigma individuals can experience due to their injury, so I guess I expected them to be cautious when meeting strangers. Aalbert, for example, was very chatty, asking me everything from what I am studying, to movies that I like, to how I got there that day. On the walk, I had the pleasure of talking with Maxim and Adrianna*. That was my first time to Granville Island, so both members showed me the highlights. Adrianna and I also got to talking about travelling. I am going to Europe in May, and as a seasoned traveler, Adrianna shared her travelling tips and described her favourite places in the regions I’ll be visiting.

Granville Island Highlights According to the Walking Club
A) On the pier, I was warned about eating outside because the birds are ruthless!
B) The market has some of their favourite sweets.
the location where bands play live music in the summer and the marina where a family of three sea lion sometimes sunbathe
(image via wikipedia)

In this course, we have discussed a wide range of symptoms that can result for TBI and in my short two-hour visit I did notice a few of these being displayed by the members. I would hesitantly classify them under attention, language, memory and difficulty multitasking. With my background in speech sciences, I noticed a wide variety of language abilities in the members. Several members had slowed speech, although their intonation was intact. Maxim showed some difficulty with word retrieval; depending on the topic of conversation, he would pause midsentence and be silent until he remembered the word or start on a new topic. Adrianna seemed to have an impaired ability to detect sarcasm, although it should be noted that even people without injury could have difficulties with this. Finally, while Shane was extremely energetic and animated while he spoke, he was hard to understand. Without knowing what his native language is and his fluency in English prior to his injury, it is hard to know if he is speaking a combination of the two languages or had some other impairment.

I greatly appreciate the opportunity to meet these members. In school and in the literature, there is a tendency to get focused on what can go wrong, with far less attention to what has remained unchanged and how these symptoms affect a survivor’s everyday life. The interactions also emphasized how each injury is unique, that an individual’s symptoms can vary across situations and that their symptoms do not overshadow the person that they are.

*Name had been changed.

Upon arriving at Headway, I was immediately greeted with a “Hello!” but it wasn’t from the staff, it was from a member. This instantly changed my perspective towards my time at Headway from wary to calm as I initially had this irrational fear that it would be difficult to communicate with the members.

I had the pleasure of spending my time with two members and another volunteer (not from our class) and we spent the first half playing Wii bowling and the second half baking oatmeal cookies but all the while enjoying communicating with one another.

Both of the members were at first glance seemingly impaired due to their injury, but after a mere 5 minutes of being around and talking to them, it was obvious that they were ordinary people as you and I.

The first member I had the pleasure of talking to, was very animated as she loved to talk about her children and her grandchildren and in no way did it seem like she or her family was truly affected by her injury. She expressed polite interest and asked about my life but was definitely more focused on telling me about her family.

During class, we have talked about the struggles that the victims, both direct victims and family members, of TBI face: communication and understanding. Secondly, the struggle of adapting to the consequences of suffering a TBI has been a large factor in how it affects family dynamics. However, it was amazing to see that this member had fully adapted to her change in lifestyle and if anything, loved her family more because of how it knit them all together.

The second member hardly spoke and if so, it was in two word sentences. At first I couldn’t quite understand what he was trying to tell me or what he was doing. I soon realized that although he couldn’t quite communicate with his words, he was very clear in his actions. It was a constant playful game and everyone who was there at Headway truly enjoyed both his company and playful antics.

What was also really interesting was that he had an app on his iPad that allowed him to communicate via conventional methods: speech. There were pre-recordings of sentences that he frequently used and when needed, he would simply press play and viola! Although he himself wasn’t the one speaking, it was interesting to see how easy it was for him to tell us or ask us something.

Despite the two of them having different communication abilities, it was very easy to understand both.

Although I didn’t get too much into the nature of their injuries for fear of prying, it was clear that despite having been impaired, the way they had adapted was incredible. Looking past their exterior, they were functioning just as you and I could and if anything, had a better grasp on living life.

I honestly didn’t know exactly what to expect my Headway experience would be like. However, I had heard nothing but good things from students who had already volunteered, so I was excited. I arrived early, before any of the other members had shown up, so after the quick orientation I had some time to look around. I expected the place to have the usual slightly cold and sterile community center feeling, but I was presently surprised how homey it felt. I love how one of the rooms had one wall dedicated to the member’s art projects. Some of them were beautiful!

The staff member said that people had been showing up later than usual recently so we wouldn’t start until some members showed up. As they did I was surprised at the diversity of the members abilities. Some had problems speaking yet still communicated quite effectively (one in particular was very funny). Others loved to talk. I had a lovely conversation with 2 of the members. While their speech was sometimes slightly disorganized, you could still understand. We talked about lots of things, but mostly education. One was in an early childhood education program. I don’t recall if it was before or after their accident, either way they were intent on continuing their studies. That got me thinking about how accessible higher education is for people with TBI. I found a great article; the beginning is very basic TBI stuff, but it goes into a good discussion about education plans and strategies. Worth a read! http://www.brainline.org/content/2008/10/student-brain-injury-achieving-goals-higher-education_pageall.html.

When cooking the breakfast both the staff and members were giving me a hard time (all in good fun of course). One member in particular was very enthusiastic about cooking. He left hardly anything for me to help out with, but I did my best! Most members sort of stayed in the dining area doing their own thing. Those who were cooking didn’t seem to mind. One member, who had a language disability, was working on a program on an iPad. It would play an audio recording of a word and have the letters scrambled, and the player had to unscramble the word (I think this was the app: https://www.youtube.com/watch?v=Zd20GbDpW3E ). It was interesting to see how word complexity did not really correlate with the member’s abilities. While they unscrambled “cupboard” with ease, they struggled with words like “iron”. It is interesting how language impairments can be complicated like that. When that member was done they passed it on to another who used it to make cute Photoshop alterations of photos of other members. I’ve heard of tablets being effective for brain training exercises for patients with dementia, and it was interesting to see it in action in a similar context.

The trip allowed me to break down my preconceived notions of what someone with TBI looks and acts like. I had a blast volunteering there, and can’t wait to do it again!

On the bus toward Headway, I found my mind circulating with thoughts of TBI. My head randomly bounced around with scenarios of the potential accidents and consequences of the resulting injuries. How can an outsider even comprehend what the feeling must be like? Throughout the first half of this semester, I’ve been fortunate to learn a great deal about one of the most prevalent and complicated injuries. The presentations and examples we have been exposed to have certainly improved my understanding of brain injuries. However, there comes a point to where the material in class can only take you so far. There is simply no substitute for human interaction. In this case, interacting with the individuals who are actually LIVING with the disability.

Nearing the centre, I simplified my thinking. Taking a page from my previous volunteer experiences I told myself, “I’m here to spend quality time with soon-to-be friends, so enjoy the opportunity.” Furthermore, I was there to go on a walk! (one of my favourite pastimes). After that, it was just a manner of finding the location.

Upon entering the centre, I was greeted by a young woman. After introducing herself, she quickly decided that it was her responsibility to show me the ropes. She took it upon herself to introduce to me to everyone as well as present the different areas of the centre. I was quickly struck by layout of Headway. To me, the design is very unassuming and comforting. A pool table, arts & crafts table, TV lounge, computer room, kitchen, and nap room. Surely, I must have been in a club house.

I had arrived with time to spare and the walk was not for a while. This gave me a chance to play a few rounds with the ‘Maestro of Headway Pool’. We shared stories and laughs throughout our match. However, most of laughing was at the slow, meticulous victory by the Maestro at the expense of my pride. Around our third game, I was thinking about the casual nature of my interactions with the Maestro and the other members. There was no sense of having to ‘sugarcoat’ my words or actions. Everyone made me feel comfortable, which made it easier for me to connect with them. The welcoming disposition displayed by those at Headway was reassuring beyond words.

Now I should get to the walk before I finish. We were fortunate to have the sun shining throughout our stroll. We walked down in a group of six to Granville island. Along our trip, I had a chance to speak with a couple of the members I had not yet chatted with. One discussion that really stuck with me was with a young woman. She was explaining her occupation which she started only months ago, and the amount of travelling (via walk and transit) she must do every week. I did not know the severity of her injury, but I was nonetheless taken aback by her description. I found her independence truly inspiring.

When I heard that we would be volunteering at Headway, a flurry of thoughts and emotions coursed through my mind – excitement at the prospect of learning; curiosity; nervousness about what to expect. Having taken courses on brain function and biopsychology and after my classmates’ thought-provoking presentations, I couldn’t help but ponder those concepts in anticipation.

Would communication barriers be present if I encountered members with aphasia? How would I deal with the candor of  individuals whose brain injuries impacted their social discretion? What if, in learning about common post-TBI personality changes like aggressive tendencies, my expectations changed the way I interacted with members?

In retrospect, I suppose my inexperience did lead me to have preconceived notions of how TBI survivors appear, act or even feel. But all that dissipated upon entering the centre. I was warmly greeted by an affable young man who cordially shook my hand and directed me to the facilitator. I met the members who were present and it quickly dawned upon me that brain injury truly is unique. Its signs can be present or completely inconspicuous, causing a great deal of variation in presentation and demeanor.

For example, Mr. X had suffered a stroke-induced brain injury, leading to loss of function in some extremities, fatigue and slight cognitive deficits. However, he was a wonderful conversationalist with incredible memory. On the other hand, Mr. Y had speech impairments and frequently expressed fatigue, but enjoyed knitting using an ingenious homemade contraption – a loom built from a yogurt container and popsicle sticks (which he gleefully informed me were all diligently eaten by him). Despite my initial struggle in understanding many of his sentences, he was soon teaching me how to knit and telling me about his family.

Mr. Y’s innovative contraption!

After an hour of chatting and my shaky foray into knitting, the baking began. While some members found following the recipe instructions difficult, others carried on with ease. Some lost interest while another demonstrated task perseverance by repeatedly melting butter in the microwave. Indeed, all individuals were vastly different: some spoke fluidly while another primarily gestured as a means of self-expression. But common to all was the ability to come together in a positive space with mutual support and respect. 

Chocolate cinnamon bar – delish!

Interacting with the members was extremely interesting, as was learning how widespread the implications of brain injury are, and how varied post-TBI functioning, attitudes and even relationships can be. I furthermore noticed how their actions embodied community, when members stayed to clean, play games and chat. Their positivity was infectious, and I found myself staying an extra 40 minutes! I certainly gained new insight into the individuals who experience brain injury, the unique challenges they face, and the importance of involvement in shattering preconceptions.

A touching testimony to the friendship fostered by the Headway Centre, written by one of the members: “It’s very good to have nice friends at Headway, we are all like family here at Headway Centre Vancouver.”

I went to the Headway Center expecting to be involved in a new exercise program with some clients; however, I realized from talking with the coordinators that the programs are flexible and are dependent on interests and participation of the clients. The new exercise program has not been a popular one and on the day I volunteered the clients arrived later for lunch and a presentation about community involvement.  Coordinators called “connectors” came to speak about communicating with clients and programs in the community to set up employment, health, recreation, and travel opportunities.

I had the pleasure of meeting many clients from the Headway Center and immediately noticed the friendly and welcoming attitude of all the clients. The clients differed on ways of communication.  For instance, one client was immersed in solving a crossword puzzle and was very articulate about his interest in solving crossword puzzles from different newspapers. In contrast, another client communicated mostly through hand gestures and was very playful by initiating a handshake of about ten moves with everyone. I helped this client fill out a form about his interests because he seemed to have difficulty in understanding what was written. From our class discussions regarding brain anatomy and impacts of injuries on one’s abilities, I realized perhaps the part of the brain that may have been affected by this client’s accident is associated with language. The cognitive domain of attention span may have been affected in a few clients because during the presentation by the “connectors,” some clients would appear to not be interested and would look at the floor or want to be talk with someone. On the other hand, some clients who did not prefer to communicate verbally were very expressive through other means such as hand gestures and artwork. One client has been successful in knitting and selling their products. The client has also mastered intricate bead works and nail and threading artwork, which shows that the client’s visual spatial abilities have been maintained and well developed.

From an observational standpoint, I realized how a traumatic brain injury can be obvious or invisible. I noticed that some clients required simple explanations for instructions or safety precautions and had physical impairments; whereas, others were vocal, eloquent, and did not have difficulties with mobility. Also, unfortunately, one client’s head area had a portion missing, which was an obvious sign of the physical trauma that the client had endured. With the information from class discussions about life changes after injuries, I can understand how difficult it may be for clients to find employment, how the clients have found ways to adapt or re-learn certain skills, and how a support system of friends and family would be important in physical, emotional, and cognitive recovery. I admire how the clients are positively supportive of each other, appreciate each other’s talents and like to joke with one another. I think their friendships must have an immense impact on their motivation to relate to others and express their creativity.