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I have not been officially diagnosed with aphasia, but am sure that I have home form, and luckily not severe. However, that makes it more difficult also, since I don't have any physical weakness, people forget. I have pretty much resumed daily activities. Reading still makes my head feel tight (only way to explain it) I guess because of the concentration involved.

I am so glad to read how people describe what it is like, I have said some of the same things to my family. When I have read some of the posts to them or info from the aphasia website, I cry. Finally I found something to show them I'm not just a crazy frustrated and menopausal.

Anxiety is an issue too, so now that I don't have to wait for things to get better (since they probably won't) I know I need to have more patience with myself and demand it from others, so I can hold it together.

It has been hard to be my 92 yr old father's advocate as well as my own. Now that I am looking back into what support is available in my area, I'm not finding much at all. I am in the biggest county in Florida and that's a shame. I hope that as I search for my own answers I can help others to get the info that they need too.

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Mike: Bruce does has aphasia and of course still struggles three years in. It becomes harder, I think, after all the strangers come and go - therapists, caregivers. Then as recovery settles into routine, the caregivers are constant and of course, me and the challenges become less.

 

I do not talk for Bruce either. We live in a small community and mostly use the same services every week, so everyone knows us. This week we have some new caregivers coming in and that will challenge him.

 

But I had to leave a vocabulary list for the new people - lol. That was really difficult. It is amazing how used to his language I am - like your brother I am sure. This morning when he woke up, just as we were transferring to the WC, he asked about the driveway. This was startling in that Bruce needs wake up time. He wakes up about 4:30 and it is out of bed at 5 am. So he was obviously chewing on something during that time. After coffee and his paper, he finally got to it. So just go one step at a time. Work to read out loud everyday and sing. Get that radio or a CD going and sing away. Your writing is so important, so keep coming and posting. Every day can bring some improvement. Be easy - Debbie

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Hi,

I have it too; word retrieval, peoples names - that kind of thing. It's been a part of my life now for so long that I just go with it. (When it happens I call it a "brain fa*t" :) )

 

Susan :uhm:

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Thank you all Mike, Debbie and Susan. I can't begin to express how reading some of the posts has made me feel. I had gotten on edge with everyone and everything. No one was validating me at all, no one had a clue what has been going on inside here. I had even used some of the same examples I was reading to try to explain to my family. It is so comforting that SOMEONE out there understands and also I am understanding my family by reading from caregivers.

To add to my personal communication issues, which really aren't bad, I am caregiver and only child of my 92 year old father. I've pretty much got his "stuff" under control and thank God he is still very with it and for the most part, easy going.

After coming back to this site I also went looking for any local organizations or groups.( I usually have to look more than once to really get what I'm looking for tho) I'm amazed at how little information and assistance is available, and I'm disappointed that I was not properly evaluated by either the speech pathologist or the neurologists that I saw while I was in the hospital.

In addition to realizing that since I had reached about 18 months post, my brain didn't seem like it had been making any more progress. I was in a car that was rearended back in November. There was no major damage to the car but man my neck and back felt it. Since my stroke was caused by a dissection in a vertebral artery, therapy of my neck had to be handled very carefully. I found that I someties was having muscle spasms on my head and neck which were like migranes and of course the muscle spasms in my back that travel down my left leg.

So I've been having to deal with all sorts of realities. I have "back days" and "brain days" that are my new normal. When I'm having good days I think I end up doing too much and it takes me longer to bounce back. I have no insurance and have not had a lot of follow up with doctors but now that it is evident that I have aphasia, I will see about getting evaluated.

I have found different topics in the forums that seem to apply to me and hope to be able to give back some help from posting my experiences as well.

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florida access line for you --- be sure to not oly identify yourself as a stroke survivor but also as a brain injured person ( all strokes are brain injuries) it looks like your state has some specific programs for brain injuries the # is 18667622237 now advocate for your self... tell them you need help sorting all this stuff out and you feel you are slipping through cracks in the system... like i said lay heavy on the brain injury aspect of this...... for dad Elder care -- they can review and make sure he and you are getting all services he is eligable for try 1-850-414-2000 it also looks like your state has the 211 number activated... dial 211 and that number alone should connect you to different appropriate agencies... this is the point where you put away pride and you ask for help and information on any programs you and dad may qualify for... each state gets to do what they want how they want with money follows the person --- ask what does florida do with it??? cause dad or you for the matter could easily be in a nursing home costing far more than taking care of yourselves..... its a matter of trial and error and just keep asking---- get onto your state page and get snoopin... help will not come to you, many people who are employed by agencies are incompetent,, so calling the same number a couple times and asking the same questions will bring you different answers... find a seasoned pro... they exist.. but you got to weed them out to find them.....and aphasia my husband has - global apasia meaning he mis understands info in and out... he is very accute.... you can do some simple exercises to stimulate you brain... at you level of functioning word finds, crosswords and card games ... anything to "exersize the brain"... if you have health ins -- ask for another speech eval..... and don't even get me started on doc incompetencies--- but there are good - very good docs out there... start looking for one... a nurse practioner or phsicians assistant who has specialized in the nueroligical area will be as good as a nuerologist - even better - they act human..... and they take their Q's to some one with more expertise when they need to... now i hope the #'s i give you help.... you can also get on your state of florida webpage and navigate your self around... also look up money follows the person state of florida and see if you think you or dad qualifies for furthur assistance.....

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