Aphasia Snapshot: Taking the Pulse of Our Community
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 wanted to expand 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’ll 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 will be open for a few weeks, and then close to new answers. At that time, we’ll 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.
Ready to jump into the first Aphasia Snapshot and share your thoughts?
Aphasia Snapshot: Community Connection
This is a topic that we covered a year ago, so the results will be extra interesting because we can look back at the answers that came from our chat, too.
We want to know if you know other people (beyond yourself) with aphasia, whether you think it’s important to connect with others in a similar situation, and where you’ve met other people with aphasia. Fill out the question set below one time only before March 19 at 3 pm ET. We’ll be back on March 25 with the community results.
Lisa Brown –
Stroke – 2014
My wife, Dea, suffered a stroke after coming out of aneurysm surgery on Feb 15, 2017. She can repeat my words when I ask her to but really doesn’t try to talk other than when I ask her to repeat my words. her volume is very low but can be heard at times. She has aphasia & apraxia and I believe she doesn’t try talking because she is frustrated that I do not understand her. After four years , what is the approximate % chance this will ever change/improve?
Tamasa Toi Lucious. Stroke and aphasia
I had Botox shots,
……is there info that causes PPA?
I am my partner’s full-time caregiver after his having suffered an aneurysm last April. He has both Aphasia and Apraxia and his arm has not made much progress (not enough to be able to use it functionally). He can walk with assistance. At this point, he is making minimal progress with his speech and comprehension and does not like to work at home in any disciplines. He has become more and more frustrated in his situation but won’t put forth the effort to improve. He doesn’t want to try and truly believes he will not improve no matter what I say or do, and even after hearing from therapists and hearing a very frank and from the heart truth about his future with his rehab doctor. I am in search of online interactive games/puzzles he can play, or videos we can watch about others who have been affected. There is so much out there, but as I have searched I have not really been successful in obtaining either. He is very indifferent about joining a group or anything like that either. Your insight and suggestions will be taken with much gratitude!
My husband is 60 and has FTD and Primary Progressive Aphasia into 4th year. I tried Cafes. Kent loved the music part. When doctor explained aphasia to him he just nodded. She said that’s the aphasia. Whereas communication is our biggest challenge, I have no expectations at this point that he will respond verbally to how he feels. As his caregiver I need to learn more about aphasia and welcome hearing what people having aphasia are saying. In my case they are his voice. God Bless you all on this journey.
I got my second Covid shot last week like a lot of people so sick of this last year my support group for aphasia my speech therapy came to an end I’ve been afraid to get anywhere near people but in two weeks when I’ll be totally cipherI want to get back to working on my problems when taking speech therapy I had to ask if I was getting better or a file is broken I wasn’t really sure because when you deal with it on a daily basis you lose your perspective
It was a year be for I was able to meet someone else who had Aphasia. It was good for me and the therapist. She worked with me to get a Aphasia group created. My daughter recorded the session the first time I met the Speech Therapist after my stroke. I gave my therapist permission to play it for her class so they could see what patients went though. She shows it every year for new students I have even come to the class so they can meet someone with Aphasia.
I play the recording of the first session to remind me how far forward I have gone.