I have been a practicing speech-language pathologist for the past 40 years. My last position prior to my retirement in September of this year was as an out-patient SLP at Virginia Commonwealth University Health System (VCUHS) rehab clinic working primarily with stroke and head injury patients. Ours is a rewarding profession but during the past year and a half my involvement in a community aphasia support group has been one of the most gratifying experiences of my career.
Approximately two years ago, the daughter of a stroke survivor contacted VCUHS Speech/Language Pathology Department asking for volunteers to help her start an aphasia support group in Richmond, Va. She indicated that she wanted to form the support group to provide her mother and others living with aphasia the opportunity to exchange information, opinions, and feelings about this communication disorder.
The first group meeting was held in February 2012. The discussions during the monthly meetings often focused on how little the general public knew about aphasia. Other recurring topics included: loss of insurance coverage for out-patient speech treatment due to “plateau in skills” or insurance caps; false assumption that loss of language means loss of intellect; family members and others lacking appreciation of what it is like to have a head full of thoughts and ideas but not be able to communicate these thoughts to others. One of the group members, a corporate trainer prior to his stroke and subsequent aphasia, had an idea about how to address these problems/misconceptions: He proposed making a video that recorded the personal narratives of group members to educate healthcare professionals as well as their own families and friends on the daily challenges of living with aphasia and strategies for being a good communication partner. He and other group members felt that who best to advocate for aphasia patients than those living with aphasia themselves?
This past year, Marcia Robbins and Kate Schmick (two other SLPs who volunteer with the group), Jan Thomas (support group member who has taken a leadership role in the group), and I applied for and received funding through the VCUHS Speech/Language Pathology Department to produce a documentary style video on living with aphasia. Eric Futterman, a Richmond-based videographer, filmed and narrated scenes of aphasia support group members going through their daily routines and one member interacting with SLP. The 18-minute video highlighted the fact that those living with aphasia were not a homogenous group but rather individuals with unique needs and challenges as they faced the difficult road to recovery from their stroke. The video also showed support group members getting on with living and finding new talents. Our group had a community premier of the video entitled “Patience, Listening and Communicating with Aphasia Patients” during our September, 2013 monthly support group meeting. 90 people from the community attended. Attendees remarked on the powerful and informative message of the film.
In an effort to spread the word about aphasia, we have contacted the National Stroke Association and the National Aphasia Association about posting this video on their websites. NSA already has posted the video on their website.
Susan Hapala, M.Ed.,CCC-SLP, is a retired speech-language pathologist who volunteers with the Richmond, Virginia Aphasia Support Group. She can be reached at firstname.lastname@example.org.