Let's "Talk" About Aphasia

Aphasia is a word that you might not hear very much unless you or a family member are affected by this disorder. You can learn more on the Mayo Clinic website http://mayocl.in/1LRdio6. Aphasia affects a person’s way of communicating both verbally and in written language. It often follows a stroke but can also be a result of a brain tumor or other neurological disease like MS. While a person with Aphasia might not be able to communicate well, it does not affect their intellect, so there is no need to talk-down, or talk too loud, to a person with Aphasia. To learn more about this disorder please read the Mayo website and become aware of this communication problem that many people share. When you encounter a person who does not communicate effectively realize that they are probably as frustrated as you are.

The National Aphasia Association (NAA) has a list of books on their website that were written by people with Aphasia (and their caregivers) which explore this disorder first hand. Here is information about the books they suggest, https://www.aphasia.org/aphasia_resources/books/ During the month of June, please get to know about Aphasia and how it affects your friends, neighbors and family members.

I am tagging Mayo Connect members who have discussed their Aphasia. We would enjoy hearing from you with an update as to how you are doing and what has helped you (or frustrated you) as you deal with Aphasia. @mkf1 @gremeika @marieelise @KMH
Teresa

Hello All: A few years ago I knew what Aphasia was all about – I had a paralyzed vocal cord and also a Parkinson’s diagnosis. I had a lot of “word-problems.” Some of you know all about that – your words can become garbled – if they come out at all. Sometimes, it is difficult even understanding the words of others. How frustrating not to be able to communicate!

Aphasia can be caused by many factors including stroke, brain aneurysms, neurological problems like MS, and the list goes on.
As a result of my history – I became a follower of the National Aphasia Associations’ website. This month I received an email blast that I wanted to share with you, https://www.aphasia.org/stories/invisible-effects-aphasia/.

Here the author of a book, A Stitch of Time, shares some ideas of what it is like when her world became “Quiet.”
Would love to hear your thoughts and comments about your own experiences with speech problems – whatever their origin. Teresa

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Let’s continue to “talk” about Aphasia – How can we best support friends and family who have Aphasia? Here are some ideas from a website: http://bit.ly/2tPSqyC What have you found helpful? Teresa

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@hopeful33250

Hello All: A few years ago I knew what Aphasia was all about – I had a paralyzed vocal cord and also a Parkinson’s diagnosis. I had a lot of “word-problems.” Some of you know all about that – your words can become garbled – if they come out at all. Sometimes, it is difficult even understanding the words of others. How frustrating not to be able to communicate!

Aphasia can be caused by many factors including stroke, brain aneurysms, neurological problems like MS, and the list goes on.
As a result of my history – I became a follower of the National Aphasia Associations’ website. This month I received an email blast that I wanted to share with you, https://www.aphasia.org/stories/invisible-effects-aphasia/.

Here the author of a book, A Stitch of Time, shares some ideas of what it is like when her world became “Quiet.”
Would love to hear your thoughts and comments about your own experiences with speech problems – whatever their origin. Teresa

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Hi Teresa, I try to read by wearing several pairs of reading glasses and a large magnifying glass with a light built in. But in a short while the ability goes away and I rest my eyes and then try a few different pair.
I was thinking and mentioned sometime back that my memory was at times challenged.

Once again there is nothing definitive.

I’ll attempt to carry on but I’m spinning out of control.

Thanks for the other discussions

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My husband has aphasia caused by a brain tumor. It is a very frustrating situation for both of us. He hardly speaks around other people and even to me. His speech therapist wants me to correct him when he says the words but then he gets annoyed at me. I try to explain that I am trying to help him but he just clams up.

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@rosez

My husband has aphasia caused by a brain tumor. It is a very frustrating situation for both of us. He hardly speaks around other people and even to me. His speech therapist wants me to correct him when he says the words but then he gets annoyed at me. I try to explain that I am trying to help him but he just clams up.

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@rosez I wonder if the reason your husband gets annoyed, is because he may be embarrassed that the incorrect word/phrase was said. Or, in his mind, the correct wording was used. Perhaps if you think of ways to gently guide him it might be less frustrating for both of you? Maybe saying, "Oh, yes, that sky really is pretty today, isn't it?" when he said something else but talking about the sky is what he meant. Would that be worth a try? What has your husband's doctor said is in the future for the situation?
Ginger

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I am sure that he is embarrassed because he is a very proud person. I do speak to him gently as you said but he still gets frustrated

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@gingerw

@rosez I wonder if the reason your husband gets annoyed, is because he may be embarrassed that the incorrect word/phrase was said. Or, in his mind, the correct wording was used. Perhaps if you think of ways to gently guide him it might be less frustrating for both of you? Maybe saying, "Oh, yes, that sky really is pretty today, isn't it?" when he said something else but talking about the sky is what he meant. Would that be worth a try? What has your husband's doctor said is in the future for the situation?
Ginger

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Ginger, as a caregiver to a spouse facing this affliction, I’m reminded that each caregiver has to adjust the response to what she/he knows about the relationship and each person. We have to learn to trust ourselves—and it’s extremely hard to do! We feel painful stress because we can’t fix everything. In my situation, I’ve learned that a major goal for us must be to keep our interactions as calm as possible. Sometimes that has involved protections from troublesome personalities who may or may not realize their intimidation toward others. Sometimes it involves overriding a bad choice from a physician who doesn’t know the patient’s history. It’s a very hard journey for each of us. The trials are unexpected:the caregiver wakes up with a horrific migraine and the spouse can’t grasp the need for her to have respite from sound and light till the medication can take effect. He doesn’t realize what he’s doing. This is life, requiring loving care and extreme patience.
@rozez is not alone in these struggles and feelings. I hope we can encourage and comfort one another.

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Thank you

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@verilee1776

Ginger, as a caregiver to a spouse facing this affliction, I’m reminded that each caregiver has to adjust the response to what she/he knows about the relationship and each person. We have to learn to trust ourselves—and it’s extremely hard to do! We feel painful stress because we can’t fix everything. In my situation, I’ve learned that a major goal for us must be to keep our interactions as calm as possible. Sometimes that has involved protections from troublesome personalities who may or may not realize their intimidation toward others. Sometimes it involves overriding a bad choice from a physician who doesn’t know the patient’s history. It’s a very hard journey for each of us. The trials are unexpected:the caregiver wakes up with a horrific migraine and the spouse can’t grasp the need for her to have respite from sound and light till the medication can take effect. He doesn’t realize what he’s doing. This is life, requiring loving care and extreme patience.
@rozez is not alone in these struggles and feelings. I hope we can encourage and comfort one another.

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@verilee Thank you for your response, as you are "in the trenches", too. You're absolutely right, each person and situation is different, and has to be approached differently. I have not been in a situation such as yours and @rosez. Mine was with my father, the last few weeks he was alive. His mind never gave up, but his body did, and he was frustrated by garbled language attempts, and the varying responses from family members.

You all have my support.
Ginger

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Thank you!

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Hello @rosez, I'm glad to hear that your husband is seeing a speech therapist, that is a good start! I suppose that his/her idea to correct your husband when he makes a mistake in his speech is his/her opinion but might not be the right approach for your husband at this time, especially if he seems frustrated at your attempts to do so.

Has the speech therapist suggested reading out loud? This can be a gentle way to get a speech problem corrected. If your husband likes to read something in particular, whether it is magazines, newspapers, or books, you could both read out loud together, taking turns (perhaps a paragraph at a time) and see if this helps him to have better speech. Has your husband had surgery or other treatment for this brain tumor? If so, how long ago was that?

@verilee1776, Thanks for sharing your thoughts and experiences. You are right, each individual situation is so different and everyone must find their own way.

Here is a video with suggestions that you might find helpful,

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@rosez and @verilee1776

Music is also a good therapy for stroke patients. Often people who don't have good speech skills can sing without a problem. Here is an article from the American Heart Association about the value of music for people recovering from strokes,
https://www.stroke.org/en/about-stroke/effects-of-stroke/physical-effects-of-stroke/healing/healing-through-music

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@hopeful33250

Hello @rosez, I'm glad to hear that your husband is seeing a speech therapist, that is a good start! I suppose that his/her idea to correct your husband when he makes a mistake in his speech is his/her opinion but might not be the right approach for your husband at this time, especially if he seems frustrated at your attempts to do so.

Has the speech therapist suggested reading out loud? This can be a gentle way to get a speech problem corrected. If your husband likes to read something in particular, whether it is magazines, newspapers, or books, you could both read out loud together, taking turns (perhaps a paragraph at a time) and see if this helps him to have better speech. Has your husband had surgery or other treatment for this brain tumor? If so, how long ago was that?

@verilee1776, Thanks for sharing your thoughts and experiences. You are right, each individual situation is so different and everyone must find their own way.

Here is a video with suggestions that you might find helpful,

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His therapist did tell me to speak slowly and in short sentences. He isn't a music person but does like listening to Pandora on long driving trips.

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