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Happy New Year! We were wondering if there are others who's loved one is a person with Aphasia and would like to share how you deal with the difficulties in communication.
AHAASAKatie, January 2, 2019 9:24am EST
Good morning, I am so sorry that you are having to manage this. I can share the information we have on Communication Challenges post stroke. Can you tell us a bit more about the situation and the patient? Please know that we want to be helpful and support you during this time. Best Katie
JKViggiano, January 2, 2019 12:27pm EST
Patience, humor, and lots of pointing!! We are 11 years post-stroke and my husband's language ability has changed dramatically. He started with only Yes and No and he said those words indiscriminately. In those early years, we needed patience and strategy. We started with big picture: person place or thing. We worked our way down to what he wanted to say. It was important to let him try rather than start guessing and talking for him and over him. We made games the whole family could play to help him learn words again. No matter how he was doing, we encouraged him and assured him it would get better. Yes it was hard and frustrating but we kept at it. After about 4 years, he could put 3 words together. They may or may not have been the right 3 words or in the right order but...3 words!!
Then he started reading out loud. After about a year of reading out loud (usually reading the exact same text so he could measure his improvement) he started saying sentences. Around the 5-year mark, he was able to say 2-3 short sentences in a row. It was an incredible breakthrough.
He still struggles with speaking. Around the house he is pretty good. It is quiet and no stress so he is relaxed and mostly able to express himself. Outside of the house, we try to keep it simple. No open ended questions. It is a new normal but it works for us.
Don't give up! Giving up is the only guarantee that there will be no progress. Good luck.
Kdogg240, January 17, 2019 11:30pm EST
Hi Charlotte, my wife has global aphasia. She has had it for almost 3 years now. It has been difficult for us as we have 3 year old child. Communication is key in any relationship any of us have in our lives, and when it is taken away from us things can get extremely difficult. The previous advice you received from jkv was very good, patience is a must, although I struggle with that myself. I’m finding ways to read other people’s testimonies and incorporate them into my own. There is no real simple answer on how to manage living with someone who has aphasia. You just have to try new things and don’t ever give up on your loved ones, the brain is a miraculous tool and will always find ways to adapt. Stay positive, it can get challenging at times, but just try to remember how hard it is for the person who has aphasia. Best wishes and wishing an awesome recovery! Be well Kevin.
nkeehn, January 21, 2019 11:33pm EST
I'm Dr. Keehn. I'm a clinical psychologist and registered nurse and am new to this group.
Aphasia is difficult to navigate. It shows differently in every patient and affects every family system uniquely and so the advice given by Kdogg is great. It really does take a lot of trial and error to get to the best functional methods. One of the biggest issues I see with longer term care is the sense of isolation experienced by aphasia patients and their families, so I wanted to share some local Dallas resources with you all to help feel more connected and involved.
The Bind (thebind.org) is one of the places I recommend for both aphasia patients and their families as there is a lot of care giver involvement and support. The Stroke Center Dallas at TWU is fantastic if your aphasia family member likes socialization and a cognitive challenge. Their program offers a combination research participation and heavy speech/ language remediation program, but it is pretty rigorous.
I recommend Touch Chat to a lot of my patients as it is a combination vocabulary, organization, communication type tool. Here's the link to one of the products: https://touchchatapp.com/page-sets#pageset_multichat_15 There is a free version that has a communication board and calendar that you can download to any I-pad, phone, or computer. I for sure wouldn't purchase any of those or other type systems unless your family member has tried them and can use them effectively. I also recommend making a series of flash cards that your family member can keep with them to show for communication. If they also have some alexia you can draw an image next to the word to help them cue to the word on the card. One of my patients became very independent using his flash cards. He became regular at his local Starbucks and would use the cards to greet others, order specific beverages, and provide simple feedback or ask questions. It was a great experience for him and the other regulars as his flash card drawings were quite sarcastic and funny!
There is a lot to enjoy about life that is not speaking dependent so encourage your family member to get out there and not withdraw at home.
I'd love to hear your ideas for your favorite local resources and assists!