Aphasia awareness
Do you know that feeling you get when you can't remember the name of an old teacher, or put a name to the face of a person walking toward you? Some people struggle with that feeling with every word they attempt to speak.
For a rare few, Migraine aura can result in the debilitating inability to communicate. Fortunately for Migraineurs, it is usually not permanent unless damage occurs. For others that have suffered stroke or other brain injuries or damage, Aphasia is a new way of life for them and their families and friends.
The month of June has been Aphasia Awareness Month in North Carolina. I missed this one, and am feeling badly, because Aphasia has had a really enormous influence in my life.
So, let's look at Aphasia:
* Aphasia affects approximately one in every 250 people. There are about a million sufferers in the US. Most suffer aphasia as a result of stroke, but not all.
*Aphasia robs is victims of the ability to communicate thoughts and feelings. It is a disorder of language, not just speech. It can affect anyone at any age.
*Aphasia is a communication disorder that is often the result of stroke or brain injury that causes damage to the left hemisphere of the brain where language is usually located, but also can be part of Migraine aura when it affects that part of the brain.
*Aphasia affects language but preserves intellect, memory and personality. Patients feel trapped in a body that holds them captive. Aphasia hides the competency of the person it affects.
*There are different types of Aphasia, but its effects may include a loss or reduction in the ability to speak, read, write and comprehend or understand words and/or numbers.
*Apraxia is a problem with forming sounds/words. It is a disorder of speech and is not Aphasia - a language disorder.
*Aphasia may be short-lived (transient aphasia is the type usually found in Migraineurs) or permanent.
*Social stigma and embarrassment accompany Aphasia, often turning its victims into lonely recluses who find it more difficult to deal with their language barrier than avoid it.
*Aphasia robs the patient of independence. Humans depend on language for basic daily functions in which a person with Aphasia cannot participate, no matter the desire.
*In addition to comforting patients, caretakers must learn an entirely new and different way of communicating with Aphasics, and must act as translators for the rest of the world. Without this new way of communicating, Aphasics are lost and often turn inside themselves, becoming profoundly depressed.
*Helping an Aphasic is not difficult but does require careful patience. Remember to practice compassionate listening. Don't interrupt. Work together to find each word separately. Be specific in instructing Aphasics with comprehension difficulties as they will not be able to put together instructions.
What's this like from a personal standpoint? Some the thoughts that used to go thru my mind during times when I was severely Aphasic include:
**Isolation
**Dependency
**Frustration
**Loss
**Lonliness
**Depression
**Fear
The worst feelings come when I am struck in the presence of others. Phone calls are the worst. I cannot explain what is happening, and if a family member isn't nearby, I'm at a loss what to do and usually break down in tears.
Thankfully my husband and family understands and have compassion for me. They do tend to lose patience at times when word-finding is difficult, my speech is especially halting or when I am having trouble understanding them properly, but have never gotten angry with me. Patience goes both ways.
I'm lucky they love me so much, and I try to tell them often.
Maura Silverman, speech pathologist and director of North Carolina's Triangle Aphasia Project (TAP) comments, “Advocacy is fundamentally courageous, but for individuals without intact communicative abilities, it is truly heroic.”
The Triangle Aphasia Project at WakeMed Rehab helps patients return to work and their social lives by helping to overcome the frustration and social stigma associated with Aphasia.
More information can be found in an additional blog post here:
Migraine aura oddities
Or on these great WEGO Health Migraine pages:
Migraine Aura
Migraine Aura without Headache
Migraine Attack
All WEGO Health Migraine topics
WEGO Health Migraine forum/group
.
For a rare few, Migraine aura can result in the debilitating inability to communicate. Fortunately for Migraineurs, it is usually not permanent unless damage occurs. For others that have suffered stroke or other brain injuries or damage, Aphasia is a new way of life for them and their families and friends.
The month of June has been Aphasia Awareness Month in North Carolina. I missed this one, and am feeling badly, because Aphasia has had a really enormous influence in my life.
So, let's look at Aphasia:
* Aphasia affects approximately one in every 250 people. There are about a million sufferers in the US. Most suffer aphasia as a result of stroke, but not all.
*Aphasia robs is victims of the ability to communicate thoughts and feelings. It is a disorder of language, not just speech. It can affect anyone at any age.
*Aphasia is a communication disorder that is often the result of stroke or brain injury that causes damage to the left hemisphere of the brain where language is usually located, but also can be part of Migraine aura when it affects that part of the brain.
*Aphasia affects language but preserves intellect, memory and personality. Patients feel trapped in a body that holds them captive. Aphasia hides the competency of the person it affects.
*There are different types of Aphasia, but its effects may include a loss or reduction in the ability to speak, read, write and comprehend or understand words and/or numbers.
*Apraxia is a problem with forming sounds/words. It is a disorder of speech and is not Aphasia - a language disorder.
*Aphasia may be short-lived (transient aphasia is the type usually found in Migraineurs) or permanent.
*Social stigma and embarrassment accompany Aphasia, often turning its victims into lonely recluses who find it more difficult to deal with their language barrier than avoid it.
*Aphasia robs the patient of independence. Humans depend on language for basic daily functions in which a person with Aphasia cannot participate, no matter the desire.
*In addition to comforting patients, caretakers must learn an entirely new and different way of communicating with Aphasics, and must act as translators for the rest of the world. Without this new way of communicating, Aphasics are lost and often turn inside themselves, becoming profoundly depressed.
*Helping an Aphasic is not difficult but does require careful patience. Remember to practice compassionate listening. Don't interrupt. Work together to find each word separately. Be specific in instructing Aphasics with comprehension difficulties as they will not be able to put together instructions.
What's this like from a personal standpoint? Some the thoughts that used to go thru my mind during times when I was severely Aphasic include:
**Isolation
**Dependency
**Frustration
**Loss
**Lonliness
**Depression
**Fear
The worst feelings come when I am struck in the presence of others. Phone calls are the worst. I cannot explain what is happening, and if a family member isn't nearby, I'm at a loss what to do and usually break down in tears.
Thankfully my husband and family understands and have compassion for me. They do tend to lose patience at times when word-finding is difficult, my speech is especially halting or when I am having trouble understanding them properly, but have never gotten angry with me. Patience goes both ways.
I'm lucky they love me so much, and I try to tell them often.
Maura Silverman, speech pathologist and director of North Carolina's Triangle Aphasia Project (TAP) comments, “Advocacy is fundamentally courageous, but for individuals without intact communicative abilities, it is truly heroic.”
The Triangle Aphasia Project at WakeMed Rehab helps patients return to work and their social lives by helping to overcome the frustration and social stigma associated with Aphasia.
More information can be found in an additional blog post here:
Migraine aura oddities
Or on these great WEGO Health Migraine pages:
Migraine Aura
Migraine Aura without Headache
Migraine Attack
All WEGO Health Migraine topics
WEGO Health Migraine forum/group
.
Tags: aphasia, aura, communication, headache, language, migraine, prodrome, stroke, transient
Add a Comment
2 Comments
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Comment by Ellen S on July 1, 2009 at 11:04am -
Hi Marie!
Aphasia is not at all a common Migraine aura symptom. Some of us do suffer with it however, and it's very scary the first time it happens. For me, that first time was during a phone call at work and was the only symptom of my Migraine (acephalgic - Migraine without headache). Yes, I did think TIA (Transient Ischemic Attack, or mini-stroke) as I had 2 friends who had strokes at young ages. I actually sat there waiting for something worse so I could justify calling someone at 4 in the morning. Thankfully it disappeared within a number of minutes, but foolishly it took me several weeks to get the nerve to seek help for it. This was SO DANGEROUS! That was back in my 'dishrag patient' days. No one had ever told me Aphasia could be part of a Migraine attack.
I do like the idea of pressing numbers on the phone to alert friends and family what is happening. Unfortunately, it's sometimes difficult to know when you're aphasic until you try to speak. By then, it's a done-deal. Those who know me (I think) understand that it's a part of my Migraine experience, but it is those rare moments when you pick up the phone to say "hello" to a stranger, or are in the middle of a conversation with someone who isn't aware of the situation, and the words coming out of your mouth are suddenly different from those you actually said, that are the most difficult. Even with friends and family, it is humiliating to let them experience such weakness.
Important to note: I have never been asked by anyone (outside my family) if I was okay, and no one has gotten concerned about this obvious stroke-like symptom. This leads me to wonder how many would recognize the signs of a real stroke if one were actually happening. Usually the person on the other end of the phone laughs and assumes I'm joking with them. I either hang up or pass the phone along to someone else who covers for me, because by then I'm usually weeping quietly from embarrassment and frustration, and grabbing at meds for the pain I know is close behind.
I too would be very interested to learn of others who experience Aphasia as a part of their Migraine attacks. I'd love to learn if they have additional coping mechanisms they use that I could borrow.
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Comment by Marie on June 30, 2009 at 4:01pm -
Ellen, thank you for posting this. Those videos were very moving and I think they do a great job of showing what life with aphasia can be like.
I was actually just reading about aphasia yesterday over on David Capogna's website. David's site tells his story about living with HIV/AIDS. In 2005, he suffered a stroke at the age of 35, and writes about the experience of aphasia in his post, "I can't speak!".
About of third of the way into the post, he does a great job of defining aphasia, and the different ways that people experience it. He also describes some of his experiences in therapy after the stroke, and shares one of his aphasic episodes: a two hour guessing game with his older sisters to explain "cell phone". David actually used voice-recognition software to create his website because of the affects that aphasia still has on his speech and over-all language ability.
It reminded me of what you said about being on the phone. They say that phone calls are one of the hardest things to do in a foreign language - I think that just goes to show how much we rely on visual cues to communicate, and how hard it would be if you had an aphasic episode while you were on the phone. It must be beyond frustrating.
I wonder if any community members have suggestions on how to handle such situations? I was thinking that you might be able to tell friends and family that if you have aphasia while on the phone, you'll press one of the numbers a few times to let them know what's going on.
I knew aphasia was very common in individuals who have had a stroke, but the reminder that it's also a migraine aura symptom is much appreciated. If other migraineurs in the community have experience with aphasia, I'd love to learn more about it.
© 2009 Created by Marie
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