This month we had our very first Aphasia Cafe chat and it was a great success! Over 50 people joined to share and discuss everyday tips about making life with aphasia more enjoyable. It was a warm, relaxed, and full of great sense of humor time. Between the moving personal stories and the insightful tips shared by our participants, the Aphasia Cafe hour just flew by.
Among those who joined were people with aphasia, caregivers, and speech and language pathologists. Below are some of the tips and the stories that our participants shared during this chat.
Tim and Ann, who love traveling together and were on their way back from Japan on the day of our chat, suggested to
Get out and do things together
They think that being on time for activities and travel is important in order to avoid unnecessary stress. Like anyone else but especially someone dealing with disability, they admit that they often need to fight apathy. How? They plan in advance what to do to overcome the feeling when it surprises them.
Mary T. offered a tip that combines work and pleasure:
Work hard everyday to practice a routine. Reward yourself at the end of each day with an enjoyable activity – going for a walk, riding in a car, etc.
Indeed, living with aphasia or caring for someone with aphasia is a lot of work every day. So don’t forget to make a list of what brings you pleasure and include at least one item from that list each day. They can be little things, the key is to remember to have some fun.
MUSIC came up in the discussion several times as something that many people with aphasia enjoy. That and SINGING.
My mom loves it when we play YouTube videos and sing along.
shared with everyone Audi C.
A few people offered good practical tips of techniques that help them go through the day and the tasks they need to accomplish:
Set reminders for practical things like medication or just reminders to use humor and to keep talking.
Limit choices to two: This or That.
Keep quiet, don’t talk while a person with aphasia is speaking, smile, relax and be natural – don’t stare.
Always have a writing pad and paper to make communication clearer.
Carry an aphasia ID card! This can help during travel or any interactions with people who are not familiar with aphasia.
We had great tips come also from some of our professional participants. Susan F. offered an important insight not to rely on conventional communications clues when speaking with someone with aphasia:
Don’t make assumptions based ONLY on what you see. Certain behaviors can be “crossed wire” brain communication expressions. For example, a head nod usually means a “yes” response. However, in your loved one it may not mean “yes” but instead something else. Keep an open mind to discover if a head nod means a “yes” response one time and something different the next time.
Fabi H. also suggested a few practices that exercise the various communication modalities:
Journaling/logging daily activities (using whatever strategies work for you – photos, writing, speech to text, etc.). This can give great practice with a variety of communication modalities (speech, writing, technology) plus it can provide topics for conversation when you share your journal entries with others.
And in the end, probably the most important tips of all, from Lisa R. and Regunathan S.:
Be patient with yourself and stay positive!
Try to notice the good things that are still present in your life and not only at what has been lost. As Brenda P. put it:
Count your blessings! Each word my brother says is golden.
If you took part in the August Aphasia Cafe, we would love to hear some feedback from you and suggestions for future chats. Please use the form below to give us your comments.
Find out more about our new video series Aphasia Cafe