Toolkit

Aphasia is a communication disorder that results when one or more areas of the brain that control language are damaged. It does not impair intelligence. The most common cause of aphasia is stroke however, some people have a progressive disorder called primary progressive aphasia (PPA). People with aphasia may have difficulties talking, listening, reading and writing.

Over 100,000 Canadians live with aphasia, yet the disorder is not widely known. Speech-language pathologists and communication health assistants work with people with aphasia to develop strategies to help them communicate. This support may be provided through individual and/or group sessions.

To help raise public awareness about aphasia and the importance of speech-language pathology services in assisting individuals with aphasia, Speech-Language & Audiology (SAC) has partnered with the Aphasia Centre of Ottawa to profile four clients of the Centre. 

Speech-Language & Audiology Canada would like to thank the Aphasia Centre of Ottawa for the opportunity to speak with some of their clients about their experience living with aphasia.

Christina was diagnosed with aphasia following a stroke 10 years ago. Like many people, Christina had not heard of aphasia before her stroke suddenly left her unable to speak.

Originally from Germany, she lived all over the world before settling in Canada. A mother and grandmother Christina was a healthy active person prior to her stroke and enjoyed working as a tour guide. “Then suddenly there was the stroke and everything was gone.” Unable to speak following her stroke Christina moved to Ottawa to be closer to her son and chose to live on her own to maintain her independence. An important value to her, working with the Aphasia Centre of Ottawa has helped Christina to continue living independently in her own home.

When asked how aphasia has impacted her life Christina tries to focus on the positive but admits it is not always easy:

Christina is grateful she is still able to read.  While she often struggles to find words and has difficulty speaking she is still able to find joy in reading. She also engages in hobbies such as playing the auto harp.

As a person who values her independence, Christina is grateful for the support she has received from the Aphasia Centre of Ottawa:

Christina encourages those living with aphasia to not give up and keep trying.

Joan was diagnosed with aphasia following a stroke 3 years ago. The mother of two adult children had just returned home from a church event when her husband noticed a change in her speech and took her to hospital. Prior to her stroke Joan liked to be out doing activities, whether shopping for gifts for her godchildren or volunteering with her church. Now she describes herself as a homebody who focuses on solitary hobbies like painting. 

When asked about the impact of aphasia on her life, Joan describes how she feels when she is struggling to find the right words:

Joan enjoys using her tablet, “it helps me to learn again how to do different kinds of things, for example, at one point I couldn’t do the ABC’s.” Joan also finds the ability to read helpful in finding different ways to overcome the communication gaps caused by aphasia. 

Her group program through the Aphasia Centre of Ottawa has also played an important role in Joan adjusting to life with aphasia. She finds it helpful to work on her speech with other people who understand the challenges she is facing.

Joan says the number one thing she would tell people about aphasia is that even though you don’t have control sometimes you don’t have to give up. “When something happens in your life you have to move on and try to figure out how you can work with the situation.”

Mark began noticing symptoms of aphasia about 4 years ago. He has lost his ability to read and write and has recently started working with the Aphasia Centre of Ottawa. 

A historian by profession, aphasia has had a profound impact on Mark’s day to day life and he worries about whether he will experience more changes in his ability to communicate in the future.

The father of two has tried to seek out alternative forms of interest such as drawings which he calls “doodles” that he uses to help him express himself. He has also found podcasts helpful in filling the void left by the loss of his ability to read independently. “I can listen to many of the same things that previously I would have done silently.”

Mark has just started working with the Aphasia Centre of Ottawa and is hopeful the staff at the Centre can provide some guidance and assist him to live with aphasia. 

While he is very much aware of how much he has lost because of aphasia, Mark wants people to know that there are also important and interesting things he has come to enjoy through his experience living with aphasia.

Mark tries to focus on what he can do in the moment and plan for the days to come. “There are days when I have to admit that I feel like I am just falling apart, but there are other days where I feel quite at home.” 

Roberta lives with primary progressive aphasia which she says affects her ability to remember words. Originally from New York, Roberta worked as a high school art teacher in the US and Canada. She describes her experience with primary progressive aphasia as a gradual progression from struggling to recall nouns to more general communication difficulties.  

Living with aphasia has been an adjustment for Roberta and her husband but she tries to find humour where she can.

Roberta has found that the group therapy provided by the Aphasia Centre of Ottawa has helped her to adjust to her diagnosis. She finds happiness in the Centre community and appreciates the opportunity to talk with other group members about their interests and experiences living with aphasia. She thinks many people with aphasia would feel sad if they could not attend group therapy, describing it as “the thing we can do.” 

She highlights the importance of being able to communicate:

She describes the frustration people with aphasia can feel when trying to communicate in the “real world”.  Roberta’s strategy for overcoming communication gaps is to tell a person she has aphasia and give them a small card from the Aphasia Centre of Ottawa with communication tips such as speaking slowly in short sentences. She acknowledges that some people may be afraid to say they have aphasia, but her advice is that not saying anything can sometimes make things worse. “I find it good to actually just say something.”