Technology - especially customized devices - is changing the lives of aphasia patients, giving them back the voices they'd lost and making their struggles comprehensible to others.
"The importance of technology is growing by leaps and bounds," said Audrey Holland, a University of Arizona professor and one of the nation's most respected aphasia researchers. "Eight years ago, we were struggling to do anything beyond drills on a single computer. . . . But treatment is so individualistic and people are so hungry for" technology to match.
Kate Williams, a senior marketing communications specialist for Princeton-based Lingraphica, said the focus on personalization has greatly advanced the field. During a recent visit to Magee Rehab, she noted that aphasia patient Joe Greenhouse's handheld Lingraphica device is preloaded with information about him, including details about his work history and other personal details.
"These devices need to be unique to the individual," she said. "There can't just be one in a clinic" for multiple users.
The growing number of handheld devices used by people of all abilities for all reasons has helped aphasia patients feel more comfortable with the gadgets, said Darlene Williamson, president of the National Aphasia Association.
"The beauty is now the whole world is walking around with an iPad or a smartphone so the people with aphasia look like everyone else," she said. "It's more palatable in the mainstream."
The Internet is allowing people with aphasia to make social connections like never before. The Aphasia Recovery Connection has more than 4,000 supporters on Facebook and brings patients together through other social networks.
"Connection is the key," said Carol Dow-Richards, the organization's director. "People with aphasia feel disconnected, isolated and lonely. This helps end the isolation."
The organization also creates videos that address patient concerns. When a 14-year-old British girl said her teachers and classmates did not understand her struggles, Aphasia Recovery Connection produced a video and posted it on YouTube for her to show at school. Now other teens can access that material when needed, Dow-Richards said.
Other videos on the organization's YouTube channel focus on assistive technology, individual stories and best practices for patients and their caregivers.
"We try to find a solution for everybody," Dow-Richards said.
The Greater Philadelphia area has a wealth of aphasia programs, including support groups and therapy options, both in-person and online:
Magee Rehabilitation Hospital. 1513 Race St., Philadelphia. The Aphasia Community Support Group meets the first Tuesday of each month, 1 to 2:30 p.m. Contact Sarah Lantz at 215-587-3142 or email@example.com.
Moss Rehab Aphasia Center. 50 Township Line Rd., Medical Arts Building, Elkins Park. Offers a variety of support groups and clubs as well as community education programs. Contact Mary Detwiler at 215-663-6344 or firstname.lastname@example.org.
Temple University has a variety of programs including the Philadelphia Aphasia Community at Temple (PACT), which has a weekly coffee hour, music group, writing club, and weekend support group. Individual treatment and research opportunities are also offered. Contact Gayle DeDe at 215-204-2453 or email@example.com. More information: https://cph.temple.edu/communityhealth.
Bryn Mawr Rehab Hospital/Main Line Health. 414 Paoli Pike, Malvern. The aphasia support group meets twice on the first and third Tuesdays, noon to 12:45. Contact Lacey Ziman at 484-596-5602 or firstname.lastname@example.org.
On the Web
National Aphasia Association. Provides access to research as well as therapeutic and advocacy services: www.aphasia.org.
Aphasia Recovery Connection. Focuses on online networking and social media connections: http://www.aphasiarecoveryconnection.org/.
Aphasia Hope Foundation. Besides hosting online forums, the organization has developed a detailed curriculum for those who are no longer eligible for insurance-paid treatments and those who feel frustrated by their recovery rate: www.aphasiahope.org.