Aphasia and memory problems from bleed/hemorrhage- tips, pointers, etc. for recovery?

General
1

Hello all:

I joined this group this past week. My husband's avm is located in his left temporal lobe.

Read our story here:

http://www.avmsurvivors.org/forum/topics/introduction-and-our-story-avm

He had a bleed/intercerebral hemorrhage about 10 days ago from the "ticking time bomb" AVM in his left temporal lobe.

His neurosurgeon has said that the small AVM is actually "in a quiet part" of his left temporal lobe, but it is the blood that has seeped into his memory and language center. I know as far as brain injuries go, 10 days in is nothing- but this is where he is:

- Bad memory- always having to remind him of something we might have talked about 5 minutes ago or who people are (although he does remember some stuff that slips MY mind! ;-) )

- Reading and listening comprehension- fairly bad, most of the time. Sometimes he gets things the first time, but most of the time he needs to be told several times. Has a hard time saying things back correctly.

- Forgetfulness for words- For instance, to tell me to 'plug the heater in', he struggles for all the words in that command

- Gets pronouns wrong, substitutes the wrong words, etc.

All that said, he was able to do the bills online with me watching and also complete like 3 or 4 ea. 500 pc. jigsaw puzzles this week.

From my understanding, it is a combination of the blood being absorbed and his brain healing, ALONG WITH therapy exercises that are going to make it him better. I've bought a giant workbook of exercises from Amazon and ordered the sampler CD ROM from Bungalow software. His mum and aunt have been here from the UK the last several days (they leave end of this coming week), and they have been working with him as well, doing exercises we've found online and stuff from the workbook. Obviously when he starts looking tired and zoning out, we stop.

He begins speech therapy a week from tomorrow (Feb. 14th). I am just wondering- for those of you that have gone through this type of thing and came out "the other side"- what did you find that most helped you to recover?

I am looking for first hand experience from survivors or caregivers.

Thanks in advance,

cheers,

Beth

2

Beth,

I have found Dr. Jill Bolte Taylor's book "My Stroke of Insight: A Brain Scientist's Personal Journey" an invaluable resource for those who've suffered a stoke. There is an appendix in the book where she lists 40 things that she needed (or didn't need) most in her recovery. One of the many things I found interesting was her insistance that sleep is vitally important for the brain to heal itself. I'll pray for your husband and your family.

Kim

3

Thanks for the recommendation. As it happends, I just ordered it from amazon! A friend who's cousin had the same thing recommended it as well. I just watched her 18 minute talk on TED. Very inspiring.

For those of you reading this who are not familiar, here's her website:

http://drjilltaylor.com/index.html


Thanks also for your best wishes, the same back to you.

Cheers,

Beth


Kim Palmer said:

Beth,

I have found Dr. Jill Bolte Taylor's book "My Stroke of Insight: A Brain Scientist's Personal Journey" an invaluable resource for those who've suffered a stoke. There is an appendix in the book where she lists 40 things that she needed (or didn't need) most in her recovery. One of the many things I found interesting was her insistance that sleep is vitally important for the brain to heal itself. I'll pray for your husband and your family.

Kim

4

Beth, My avm never ruptured but, I had many of the same symptoms that your husband has, from a concussion once. I lost 2 pints of blood out my left ear. My short term memory didn't work at all for a couple of weeks, till it slowly started to improve. My family said: I would ask them the same thing 4 or 5 times in a 10 min. period. I couldn't remember anything. Same for my forgetfullness and comprehension skills, they didn't work either.

Time. Time to let my body heal on it's own, is what I needed. I am not saying that there aren't ways to help the healing proccess along. There may be. All I'm saying is time and patience, lots of patience is what he may need now. It's going to take some time for the body to recover and heal itself. Don't be surprised if he gets moody and/or irritable. He may or may not. But, it is known to happen. It took me months to recover. When I did, I was pretty much back to my normal self. I hope this was of some help to you.

My prayers are with you and your husband.

5

Thanks, Ben, I have been trying to bear that in mind (er, sorry for the choice of words, LOL! ;-) ).

Some friends had said to us:

“if it was a broken leg, you wouldn’t expect it would heal in a week, in this case, though, the healing is all going on inside, where we can’t see it” or something to that effect…

I need to keep reminding myself. And the fact that I can see teeny tiny improvements going on even now is a very good thing (knock wood).

Part of the total irony in this whole thing is that he is usually the one standing by while I have some health issue or another (which all seem, er, pretty minor now in comparison ;-) ). I guess "payback is a b*tch" as the saying goes. ;-) (kidding).

Another thing I have noticed is that since England English is what he grew up hearing, he does seem to respond a bit better to that. I will do my best to get as many of our English friends over for a visit as I can, over the coming weeks (within reason, per day, as he does get tired).

If anyone knows of any video or computer based therapy materials done by someone or a company based in the UK, please do let me know.

And thanks all of you for your helpful replies and concern.

Cheers,

Beth



Ben Morrell said:

Beth, My avm never ruptured but, I had many of the same symptoms that your husband has, from a concussion once. I lost 2 pints of blood out my left ear. My short term memory didn't work at all for a couple of weeks, till it slowly started to improve. My family said: I would ask them the same thing 4 or 5 times in a 10 min. period. I couldn't remember anything. Same for my forgetfullness and comprehension skills, they didn't work either.

Time. Time to let my body heal on it's own, is what I needed. I am not saying that there aren't ways to help the healing proccess along. There may be. All I'm saying is time and patience, lots of patience is what he may need now. It's going to take some time for the body to recover and heal itself. Don't be surprised if he gets moody and/or irritable. He may or may not. But, it is known to happen. It took me months to recover. When I did, I was pretty much back to my normal self. I hope this was of some help to you.

My prayers are with you and your husband.

6

Beth…I also had a brain bleed with my AVM being on my left temporal lobe. I also have aphasia. Speech Therapy helped dramatically, but even after 3 years since my bleed, I have aplasia. I believe it gets better, but you usually have problems when you are tired. Is your husband on an anti-seziour med? If so, keep him on it until a doctor takes him off. I tried to take myself off and had a grand mal seziour last summer. I take my med everyday, but had a “simple” seziour yesterday. If you every need to ask a question of a person that has the same condition…I’m the one… I was treated at Mass General, who saved my life! Peace, Louisa

7

My AVM never burst so I can’t be of much help, but I wanted to tell you that keeping a sense of humor during all of this helps! I laughed constantly about my flubs. This is a very serious thing, but don’t forget that it feels good to laugh and joke. Some may find it to be off color, but the act of laughter gives you and your brain lots of feel good chemicals.

8 
Jamie, I totally agree with you.   It took me a while to get my friends and my family to laugh at some of the things I do, and my "situation".   Laughter and the subtle jokes make it a lot easier for me to deal with it all.   It also helps to have some chocolate on hand too.  :)<br/><br/><cite>Jamie Pantelis said:</cite>
My AVM never burst so I can't be of much help, but I wanted to tell you that keeping a sense of humor during all of this helps! I laughed constantly about my flubs. This is a very serious thing, but don't forget that it feels good to laugh and joke. Some may find it to be off color, but the act of laughter gives you and your brain lots of feel good chemicals.
9

I agree, laughter is one of the best medicines.

One other thing I wanted to mention is that after a TBI many folks 'change'. It is important that the 'new' person be unconditionally accepted as they are the exact same self, just different.

Keep your chins up or down (whichever way eases the pain) and your AVM's silent.

Kim

10

Thanks, Kim. My brother had a stroke in 2009 (the more common type)- my sis-in-law told me that we just need to get used to "the new normal".

That said, it still most certainly still seems like Paul, even now a week and a half after the bleed. It's just Paul with a head injury.

Thanks all for all of your advice and well wishes.

B

Kim Palmer said:

I agree, laughter is one of the best medicines.

One other thing I wanted to mention is that after a TBI many folks 'change'. It is important that the 'new' person be unconditionally accepted as they are the exact same self, just different.

Keep your chins up or down (whichever way eases the pain) and your AVM's silent.

Kim