The “typical” support system setup
It may not surprise you that individuals with Aphasia and Apraxia who have a strong support network typically have a better outcome when it comes to their recovery than individuals who have limited to no support. We as Speech Language Pathologists can only do so much during our one-on-one sessions – we know that practice and support needs to go beyond the clinician-patient therapy session. However, it is typically the role of the wife or the husband, the mother or the father, or even sons and daughters, that are “recruited” to assist their loved one with therapy tasks , and they are left longing for their old role…of being the wife, being the father, being the daughter and instead their relationship has become that of a therapist. This can create turmoil in relationships, adding stress and resentment, and even a lack of compliance with therapy and therapy tasks, impacting motivation levels and overall recovery.
A valuable lesson: A new perspective of creating support
I have learned an extremely valuable lesson from one of my patients, and it’s one that has made me question this path we often take. It has left me wondering if we’ve been doing it all wrong. Should we possibly start approaching “therapeutic support” in an entirely different way?
Anand Modi* who experienced a stroke at the age of 38, undoubtedly had the support of his wife from day one. She initially assisted him with his therapy tasks, asking me for new items and tasks to work on weekly, and sometimes daily. However, once Anand was able to begin speaking for himself and thus began regaining his autonomy, he started to take matters into his own hands. He began to teach those around him - distant relatives, coworkers, employees, even strangers - how to teach him and help him with his speech and language tasks.
From the stranger on his cab ride to work, to the man he assisted in the slums of India, he would share his story and what he plans to continue to achieve. Although he had a difficult time executing the actual therapy tasks with ease and fluency, he was able to articulate enough in order to teach these variety of individuals what he needed to achieve with the task, and how they could assist him. These people all wanted to help him so badly, he even started to have people come up to him and ASK if they could help him. They even started to create different treatment materials and stimulus items for him so that they applied to his real-life situations, incorporating personally relevant and functional vocabulary and sentences that were beyond valuable in his recovery. Before long, this patient literally built an Army of support people that I believe has had a HUGE impact on his recovery, allowing him to recover at a quicker pace than most, and almost fully.
How can we help our patients teach others to teach them? How do we assist them in selecting the right individuals that are skilled enough to help motivate the person with aphasia, enough to return for another “teaching” session? Are there certain qualities or personality traits a person needs to have to be able to provide this level of support to a friend, or even a stranger?
A strategy with “built-in” generalization
We often talk about generalization as Speech Language Pathologists – how do we get these skills that we’re working on in our individual sessions to generalize over to the patients’ real life environments? How do we get our patients to use these strategies they are executing with us in a different setting when talking with friends or family members? In the case I explained above, it’s somewhat obvious how generalization is built in. When the person with Aphasia is being drilled and taught by a variety of individuals that come from a range of settings from this individuals’ environment, that need to incorporate a plan for generalization is automatically eliminated.
Additionally, we’ve all heard that there is no better way to “learn something than to teach it.” Anands’ recovery was immediately put on the fast track, all because of this unique approach he developed to help himself get better.
Helping himself while helping others
Finally, we know there is a lack of education and understanding when it comes to Aphasia, and the thought of how many people this one person touched – showing them a real life example of what Aphasia is like, educating them on what people with Aphasia need, and how hard they need to work at their recovery, is beyond amazing. What a remarkable advocate…for himself, and for others living with Aphasia.
So how can we as speech Language Pathologists help our patients with Aphasia build this type of support network? Is it possible for others individuals with Aphasia to create this level of support and venture outside of their caregiver bubble?
Please note: *Anand gave author permission to use his name in this article