22 October 2009

How can you help Allen?

In 2009 Allen and I participated in a weekly Aphasia Clinic at the University of Queensland* for two hours every Monday during Semester 2. Allen particularly enjoyed the chance to meet other people who have aphasia. The photo at left shows him (far left) with other aphasia clinic participants in October 2009.

There are very few people who have the same type of aphasia that Allen has – primary progressive aphasia. Only one of the other participants in this group also has PPA (unfortunately, she was away on a trip when the photo was taken). Other members of the group acquired aphasia as a result of strokes or injuries. But they all experience similar kinds of challenges in their daily lives.

As one of the activities during this clinic, participants developed a 'personal portfolio' containing highlights of their life and information about their family. On one page of the portfolio, there is some advice for family and friends about the best way to communicate with a person who has aphasia. Here is an excerpt from that page in Allen's portfolio:

• Allow me extra time to talk. Let me complete what I am trying to say before you jump in. Please be patient.
• If you can't understand me, encourage me to try another method – e.g. writing my message, pointing to an object or picture, or making gestures to help you to understand.
• Always look at my lips and face, to get additional visual information.
• Don’t be surprised if I speak slowly and exaggerate sounds.
• If you are unsure of what I am trying to say, repeat the information back to me so I can confirm that you have understood me correctly.
• Remember that I am an adult with a speech disorder, and not a child or a person with a mental disorder. Be respectful. You don’t have to exaggerate your speech and you don’t need to talk loudly. I can understand if you speak in a clear, ordinary voice.
• It’s a help if we have our conversation in a place with no other distractions and background noise.
• Always present a positive attitude.

Many 'carers' also attended the Aphasia Clinic with their partners. They appreciated the opportunity this provided to share their experiences. Some of those carers are shown in this photo (including me, 'Chartreuse', standing.)

* The Aphasia Clinic is a program offered by the Communication Disability Centre (Division of Speech Pathology, School of Health and Rehabilitation Sciences, University of Queensland). Each week, clinic participants receive one hour of individualised speech therapy developed and delivered by a fourth-year speech therapy student working under the supervision of a Senior Lecturer from the Division of Speech Pathology. Participants and their carers then take part in a one-hour group-therapy session. The clinics meet during the university's two semester session times.

1 comment:

bou said...

That's great, Allen. Really sensible and should be extremely helpful to people...myself included. Thanks!

About me

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I started this blog in 2009 when I became a full-time caregiver. My husband had been diagnosed a few years earlier with primary progressive aphasia. Over the next four years until his death in 2013, we went on a journey of discovery about this rare condition. My blog is about what I learned, how we both coped and how the journey deepened our love and appreciation of each other. Allen’s journey is over, but mine goes on.