Aphasia Snapshot: Let’s Talk About Support Groups
We want to hear your thoughts on support groups, whether you currently have one or not. When we talk about a support group, we mean a scheduled meeting where you can practice speech or get emotional support from other people also experiencing aphasia. This is different from an informal, drop-in chat, such as our monthly NAA Aphasia Cafe.
We want to know about your support group or what you think makes a good support group. Fill out the question set below one time only before May 21 at 3 pm ET. We’ll be back on May 27 with the community results.
Ready to jump into the next Aphasia Snapshot and share your thoughts?
What Is an Aphasia Snapshot?
If you’ve ever attended one of our Aphasia Cafe chats, you know that we love to ask questions. We ask them when you sign up, and we run polls during the chat. The reason is simple: It gives everyone a chance to have their voice heard and participate in the discussion topic, especially when communication is difficult. By clicking a box or two, people who participate in our questions participate in the conversation.
We’ve expanded this project to our site to loop in people who may not be able or want to attend the chats. We find these questions provide an interesting snapshot of our community and bring more people into the conversation. Moreover, the results spark conversation. Do the majority of people share your opinion? How does your experience of aphasia overlap with people around you? It’s interesting to hear how many people feel the same way you do.
Each month, we introduce a short series of questions to take a snapshot of the community. Unless noted, these questions are for people with aphasia. If you are a caregiver or professional, we hope you pass along these questions to the people with aphasia in your life. Fill out the questions together, or encourage the people with aphasia in your life to add their voice to the discussion. This additional way to communicate makes everyone part of the conversation.
Each question set is open for a few weeks and then closes to new answers. At that time, we release the results in a blog post and a downloadable PDF so people can talk about this community snapshot. These are not meant to be scientific research but merely a way to take the community’s pulse and collect ideas around a situation.
We welcome ideas for future Aphasia Snapshots. Have a topic you’re curious about? Send the idea to [email protected], and we may turn your topic into a future Aphasia Snapshot.
Comments
5 Comments
Where can caregivers get answers to their questions? I have been trying to find a handheld device, like an iPad, so that my wife can communicate with me. So far no luck.
New Jersey School Music in Medford, NJ: has one. I intended to apply for that one.
I’ve never found a support group where I live, so I joined Facebook and found many. They are beneficial in the sense that we understand brain injury survival. Families are most often grossly undereducated about what to expect when the survivor goes home. That leads to broken homes a lot because assumptions are made that we are “just lazy” or “taking advantage” of our survivorship.
The problem with support groups is that much too often survivors (especially new survivors) use the group to ask medical questions that are not appropriate because we are not doctors. The good thing is that we share experiences about survivorship to boost confidence but also to be truthful about the realities of recovery.
My own story in brief is that I’ve survived three strokes; the first was a minor bleed in my right hemisphere. Second was several months later, an ischemic in my right hemisphere. The last was 1 1/2 years later, another bleed but in my left hemisphere. Five weeks hospitalized, then over 5 months in a skilled nursing/rehab facility.
I had a major stroke two years ago. I could type. I now speak at a level which seems perfectly normal to everyone else — but is not what it was (for me, personally). I had an undeclared college major of English Literature. I’m really upset about how people think they can confuse me, once I inform that I have Aphasia. This is also a direct violation of the American with Disabilities Act.
Two. I have Transient Ischemic Attacks and strokes. At times I become mute again and unable to speak. Have support group members been taking ASL? I used to know it, but lost all of the memory of it with the major stroke. Once the blood begins moving again in my brain…I can speak again.
Anyone with PPA who is now overcomming the disease? If so, how?