Aphasia

How many of my AVM friends have a brain injury with Aphasia ? It makes it difficult for me to read the blogs and discussions on the Network and difficult to write back. I'd like to know if it's difficult for others as well.

Weezie, I don’t know if I have Aphasia, I’ll have to look that up and find out what all the symptoms are. I have Hemianopia. But we’ve talked about me not being able to read books anymore either. Long blogs give me problems too. I can handle computers much more than books or magazines. I think it’s because there’s lots of space in between all of the text, maybe?? With a book, for me, it’s just all right there, just words and they get all jumbled for me sometimes.

I have to look up Hemiaopia..as I don't know the difference. But what you are saying about reading long blogs and I can't read books or mags is the same. My vision problem is on the right side. So you must have difficulty reading on the left and right side as well.

Trish said:

Weezie, I don't know if I have Aphasia, I'll have to look that up and find out what all the symptoms are. I have Hemianopia. But we've talked about me not being able to read books anymore either. Long blogs give me problems too. I can handle computers much more than books or magazines. I think it's because there's lots of space in between all of the text, maybe?? With a book, for me, it's just all right there, just words and they get all jumbled for me sometimes.

You probably looked this up…But I read what Hemianopia means. I probably have that as well as I have a vision problem on the right side. No one has ever mentioned Hemianopia tho. My Speech/Language Therapist only mentioned Aphasia.

Trish said:

Weezie, I don't know if I have Aphasia, I'll have to look that up and find out what all the symptoms are. I have Hemianopia. But we've talked about me not being able to read books anymore either. Long blogs give me problems too. I can handle computers much more than books or magazines. I think it's because there's lots of space in between all of the text, maybe?? With a book, for me, it's just all right there, just words and they get all jumbled for me sometimes.

Actually, I spelled it wrong…it’s Hemianopsia and thanks to Irene here I finally have an actual definition of most of my problems. If you go to hemianopsia.net there is a list of symptoms. It pretty much describes me to a tee! This is one of the things that makes me so frustrated…no doctor has ever told me that I have Hemianopsia. I’ve described every symptom listed and my neurologist never mentioned this. Even when I went to the neuro ophthamologist (sp?) and had all that testing done she didn’t even mention this to me. She just said, sorry, can’t help you! That website suggests that there may be some sort of treatment available. If I could get help with this it would make a world of difference to me. Not being able to read really makes me sad! Not being able to be in large crowds prevents me from doing the things that I used to love to do the most. If my neurologist didn’t even mention this to me, then who else would?? It’s because of this site and wonderful Irene that I now feel validated.

You are so right. I saw a Neuro Ophthomologist at Mass General and he never mentioned how I could work on my vision. I’m going to look up hemianopsia.net and see if there is anything that would help. I also joined the aphasia network to see if I can work on that as well. I cannot afford to see my Speech/Language therapist, so I’m going to try to work on it myself. She thinks I should be able to read books, but it’s so difficult and frustrating that I just get the books on CD. By the way, as I was getting dressed this AM, I thought “Does Trish hate not wearing the work closes we used to put on…does she still get up every morning and apply her mackup (spelling again)?” Does Trish just wear jeans every day now like I do??? I miss not working…I miss not wearing nice closes! Do you?

Trish, I can only find hemianopia.org. When I type in hemianopia.net, it didn’t show me a site…???

My son has quadranopsia. He gets help with his tracking issues from him occupational therapist. We have also visited a developmental optometrist. The neuro-opthamologist was a waste of time. The CNIB (Canadian National Institute for the Blind) was helpful, with lots of resources for people with issues reading and writing. There may be a similar group near you. Also, there is the Association for the Neurologically Disabled, which has therapy to help regain lost functions. We have not used them, but know people who have.

Thank you Kris…I’m going to look up the Association for the Neurologically Disabled.

Kris Walker said:

My son has quadranopsia. He gets help with his tracking issues from him occupational therapist. We have also visited a developmental optometrist. The neuro-opthamologist was a waste of time. The CNIB (Canadian National Institute for the Blind) was helpful, with lots of resources for people with issues reading and writing. There may be a similar group near you. Also, there is the Association for the Neurologically Disabled, which has therapy to help regain lost functions. We have not used them, but know people who have.T

http://www.hemianopsia.net/symptomschecklist/. This is the site, this just goes right to the symptom part. I think we both have a bit of both hemianopsia and aphasia. I didn’t know about the Assoc. for Neurologically disabled. See, another reason why I love this site. You’d think a doctor, occupational therapist, someone would mention these services available to us!!

Thanks Trish…I found it…it does sound so much like my issues.

Re: typing

We are training our son to use dictation software. (Am I allowed to say which one? There is a free app for iPad/iPhone. We are using the PC version. The school board used one from Holland Bloorview Children's Rehab, were, I think, it reads to you or you can dictate to it.) Writing is hard, typing is hard, talking is his strength. He must take after his mom :)

Kris…Too funny…yes talking is usually not an issue, unless my brain is tired and I can’t remember the work I want to say. I don’t have ipad or iphone. But I could use my PC. Will I find the one you use if I type in Holland Bloorview… I’ll type it in right now and let you know.

Kris Walker said:

Re: typing

We are training our son to use dictation software. (Am I allowed to say which one? There is a free app for iPad/iPhone. We are using the PC version. The school board used one from Holland Bloorview Children's Rehab, were, I think, it reads to you or you can dictate to it.) Writing is hard, typing is hard, talking is his strength. He must take after his mom :)

Kris…Because I can’t read very well…I couldn’t understand if they have the software. I am going to email it to my daughter to see if she can find it. Thanks for helping!

Louisa Cicillini said:

Kris...Too funny..yes talking is usually not an issue, unless my brain is tired and I can't remember the work I want to say. I don't have ipad or iphone. But I could use my PC. Will I find the one you use if I type in Holland Bloorview.. I'll type it in right now and let you know.

Kris Walker said:

Re: typing

We are training our son to use dictation software. (Am I allowed to say which one? There is a free app for iPad/iPhone. We are using the PC version. The school board used one from Holland Bloorview Children's Rehab, were, I think, it reads to you or you can dictate to it.) Writing is hard, typing is hard, talking is his strength. He must take after his mom :)

Here is the website for the speech recognition/dictation software: http://www.wordq.com/. It was recommended for a family member with a completely different diagnosis.

Thanks Kris…As I can’t read it…I’ll have my daughter look at tomorrow when I see her!

Kris Walker said:

Here is the website for the speech recognition/dictation software: http://www.wordq.com/. It was recommended for a family member with a completely different diagnosis.

It's known as hemianopia now, and used to be hemianopsia. I have homonymous hemianopia (blind on the left side of each eye.) Total. Don't be surprised no one including eye doctors have never heard of it. I had this AVM surgery in 1959, no one told me anything except I lost a little peripheral vision and it would get better. It did not get better, nor worse, and is much more than losing peripheral vision. It has big effects on perception, your eyes no longer adjust to dark and light as quickly as others. I know why I have fallen when walking from outside sunlight to a dim interior so many times. Great way to introduce yourself. There are spatial problems related to it, and I read so slowly now. I was tested for speed 10 years ago - about the same as a 2nd grade kid.

beans

Irene, yes…it is SO much more than just losing peripheral vision! You said not to be surprised that some doctors have never heard of it, but shouldn’t a neurologist know about it? Or a neuro ophthalmologist? I’m just wondering which of my doctors may be able to give me more insight. Maybe I should just count on my AVM friends instead?



Irene Carnahan said:

It's known as hemianopia now, and used to be hemianopsia. I have homonymous hemianopia (blind on the left side of each eye.) Total. Don't be surprised no one including eye doctors have never heard of it. I had this AVM surgery in 1959, no one told me anything except I lost a little peripheral vision and it would get better. It did not get better, nor worse, and is much more than losing peripheral vision. It has big effects on perception, your eyes no longer adjust to dark and light as quickly as others. I know why I have fallen when walking from outside sunlight to a dim interior so many times. Great way to introduce yourself. There are spatial problems related to it, and I read so slowly now. I was tested for speed 10 years ago - about the same as a 2nd grade kid.

beans

I have never seen an ophthalmologist who knew or even cared to know what hemianopia is, and now neuro-ophthalmologists in my experience have no knowledge, or don't want to bother to have any. It is not an eye problem, it is a cortical problem. My eyes are healthy. I have gone to neuro OPTICIANS in the recent past, and the ones who know about hemianopia are visual therapists and doctors who treat kids for lazy eyes. The whole office would be a ton of kids and me. Wherever you live, look for a neuro-optician. It's not easy, and I have spent $$$ and time explaining o experts what my vision problem is. I have been told by the old director at Delaware State Blind Services that they would not help me because I am not legally blind. That's bull, as the same state revoked my driver's license for vision years before. I am not allowed to drive in most states, and no one is going to tell me ever again I am not legally blind.

Mostly hemianopia is due to an occipital stroke, suffered by much older people. I was 9 when the AVM bled. Good lick.

beans

I also have homonymous hemianopia and also on the left. My AVM and stroke was also in my right occipital (and parietal) lobes. The neuro ophthalmologist I went to said she “doesn’t like the term legally blind”. I was trying to find out if I could be deemed legally blind as there are services, tax credits, and assistance to those who are legally blind. I believe the criteria to be considered legally blind is something like 20/200 vision in the best eye and a visual field of 20 degrees. I have no eye problems other than what comes with aging. My neurologist and neurosurgeon both advised me not to drive, but I don’t think they officially notified the DMV. I wouldn’t drive anyway, I’d be terrified! So I guess now I’ll look for a neuro optician. Thanks so much for the information, you’re such a great source for me!



Irene Carnahan said:

I have never seen an ophthalmologist who knew or even cared to know what hemianopia is, and now neuro-ophthalmologists in my experience have no knowledge, or don't want to bother to have any. It is not an eye problem, it is a cortical problem. My eyes are healthy. I have gone to neuro OPTICIANS in the recent past, and the ones who know about hemianopia are visual therapists and doctors who treat kids for lazy eyes. The whole office would be a ton of kids and me. Wherever you live, look for a neuro-optician. It's not easy, and I have spent $$$ and time explaining o experts what my vision problem is. I have been told by the old director at Delaware State Blind Services that they would not help me because I am not legally blind. That's bull, as the same state revoked my driver's license for vision years before. I am not allowed to drive in most states, and no one is going to tell me ever again I am not legally blind.

Mostly hemianopia is due to an occipital stroke, suffered by much older people. I was 9 when the AVM bled. Good lick.

beans