The rehab center said my husband had EXPRESSIVE aphasia and everything else was intact except being able to get the words out. I am finding that this is not true, and wonder about if he really had global aphasia and apraxia.
1. he can only follow one line commands, and sometimes not that
2. sometimes he knows he is saying the wrong words, and sometimes not
3. he has a problem with doing things in the right sequence
4. he has a problem with comparisons, like which is bigger/smaller/same
5. he DOESN'T understand everything he hears on TV
6. he had vision loss from the center of the field all the way right
I'd appreciate any comments or questions about his condition to help sort this out.
Last edited by Sandy Caregiver; 06-23-2012 at 07:01 PM.
Hi Sandy,
I know you are trying to figure out this aphasia business with your hubby. I will give you my 2 cents from my experience. Every one of your points is exactly what happened to me.
First, don't take every doctor's opinion as gospel. Every doctor will tell you a different answer when asking about a stroke situation. There are as many different answers to your questions as there are as many doctors as there are in the world. I googled that there are 661,400 doctors in the U.S. That means there are 661,400 different answers to your question. For example, when I left the hospital from my stroke, no doctor told me I could not read or write. I found that out when I got home and couldn't understand or read the newspaper and couldn't follow things on TV. Then my family doctor told me and my wife that I have recovered as much as I can. That the brain stops healing after 3 months (that is not true at all btw) so I left the office totally depressed with the feeling that I will never read again the rest of my life. Then I went to a neurologist and told him my family doctor said I have aphasia. He immediately corrected me - "You don't have aphasia like your doctor said; the correct word is dyphasia."
My only thought was "who gives a crap what it is called? How does knowing the right word helps in my recovery from my stroke? Why don't you get to the root of the problem, instead of telling me how smart you are? I'm pretty smart myself - my IQ is 145 - I had my own business that I just had to sell - I write music and have an audio and video studio - I have written, produced, shot and edited programs and commercials for TV - I wrote a book - so I am not stupid - I had a stroke - a stroke does not mean that I am stupid - it only means that I had a stroke, that's it. What I need is some help to become better - What I don't need is your resume every time I see you - end of story."
After that, I stopped asking questions to all my doctors about my stroke (they obviously don't have a clue because they never had a stroke:-) and only go to them to get my medications. So I decided to take control of my own life. No more being a victim and having self pity and listening to others that I will be like this the rest of my life.
After 4 months I was starting to read and write a little and had a struggle, but was able to write a few emails on my computer. Very simple things, but a start. Using the internet was still too complicated for me, so I asked my wife to find a stroke forum for me. I told her, "I'm done listening to these doctors. I want to talk to somebody that actually had a stroke and could understand what I am going through." Well, she found this board here by "accident". I see now that it was in God's plan. That was in April 2010. So I started posting here and as I got responses for other stroke survivors, I believe my true recovery started. I believe that this forum and the other friends I have met here are 75% of my continuing recovery. This is where I re-learned how to read and write and use the computer again. As I got stronger and confident, I started to help others that just had a stroke. And isn't that what God would have us do? To freely give the blessings you have been given. To help others that are in need.
I would strongly suggest that when your husband is able, have him join here with us and start to post with his own questions. It does not matter how bad his grammar and spelling are. We as stroke survivors are able to read and understand whatever he is writing. Me and writeleft started calling it "stroke speak." So we could just get our thoughts out with now worries about spelling and grammar, etc. The thing is that before long I was writing more fluid and my aphasia problem was lessening and my spelling and grammar also improved greatly. This board gave me more therapy than any medical therapy, re-hab and doctor opinions helped through all of that time combined. AND IT IS FREE!!!!
I hope this helped you some and maybe answered some questions.
God Bless,
Tim
Last edited by Positive Cynic; 06-23-2012 at 06:01 AM.
The following user gives a hug of support to Positive Cynic: Mulchie (06-23-2012)
I'm shocked that the idiot doctor told you that you didn't have aphasia (which is a problem retrieving the correct word) and said what you had was dysphasia. They often come together, but one is NOT the other. Dysphasia has to do with the your mouth and throat doing the same thing your hand/arm and leg/foot are doing on the stroke side. It means you have trouble swallowing. My husband started on a slurpy diet and hated it, but it was all he could swallow. He had to take his pills in applesauce, because he couldn't drink regular liquids. He came home on an dysphasia 3 diet, where he could eat everything except crunchy or small bits and no straw. He eats about everything now, but I'm still afraid to try the straw. Because of the dysphasia, he also had a horrible time re-learning to clear his throat. I'd demostrate and put my fist up to my mouth and make a uh-hummm sound and swallow big. He'd try to copy and make a hmmmmmm sound like he was just humming.
I often will read my husband post or parts of the books I think he will get something from. I put something in front of him to see if he could read it and he had me enlarge it to where there was pretty much just one word a line! It's time to try again though. I will start with something small, like opening word pad and making the font large, and having him peck out his name, and see if he can do it. Right now he has been using the touch pad and click button on the pad to do his English Immersion, and oftne gets them backward and I see him trying to move by sliding his finger on the button, or see him trying to click on the pad. So, I have to remind him he is on the wrong part. I put a big red label dot on the button, but sometimes that doesn't even help.
The following user gives a hug of support to Sandy Caregiver: Mulchie (06-23-2012)
Sandy Im afraid I dont know much about this. I do know I had trouble with word retrival and sentencing. I had trouble understanding instructions being given to me and sometimes needed the sentence broken up and given more slowly. Sequencing was a problem but all of these thing improved with time. I didnt really work specifically on any treatment for this I just made sure I engaged in conversation constantly and I was blessed with lots of visitors so that was easy. I had difficulty with things like baking cupcakes. I decided I would tackle this task one sad saturday afternoon. It was a disaster because of the instructions, the sequencing. I didnt kow where to start, what should go next. Very frustrating as before stroke l loved to cook. Now I can whip those cupcakes up without too much difficutly. It all seemed to come gradually with time. Have you had his eyes checked since the stroke? Also hearing can be effected as well.
Your husbands definetly sounds more intense. But the same rules apply. Dont give up. Tell him to hang in there. You are doing a terrific Job Sandy and I know its not easy. Good Luck Sandy I hope you get some answers from the board. How are you doing?
God Bless Mulchie
I forgot to say that it matters what he has is called because I'm still fighting for his disability and it all matters. I don't want his symptoms made light of and glossed over. I'm terrified we won't get it and we will be ruined.
I just went back and looked at and adjusted my list, because I forgot to mention his vision. He has blindness from straight ahead and all the way to the right, in both eyes.
I'm sure they will be sending us to all kinds of doctors to prove if we are faking or not.... dragging us into further exhaustion.
Last edited by Sandy Caregiver; 06-23-2012 at 07:03 PM.
The following 2 users give hugs of support to: Sandy Caregiver Mulchie (06-24-2012), Positive Cynic (06-23-2012)
Oh, I know why I originally left out the vision info, because it's not about aphasia. I think he has global aphasia and apraxia, rather than just expressive aphasia.
I am so sorry you are having to fight for that. There should be no question. You and your husband have enough to deal with , but I know what you mean. Everything you are both going throught and then we have to worry about insurance. That is not fiair. Keeping you in my prayers.
God Bless Mulchie
