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It has been a fantastic study to see how my wife's brain works due to amnesia (1 Viewer)

Beef Ravioli said:
May have already been answered but any newly discovered “talents” or new “likes” that used to be “hates”, etc? 

Exciting to hear the progress and thanks for sharing your story with us! 
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We haven’t found any new talents.  That could be because I am probably leading her back to what she use to do.  I keep telling her just because she liked things in the past, doesn’t mean she has to like them now.  

 
D-Day said:
Mentally is still the issue.  She is having trouble remembering the names of things.  We used Hot Dots flashcards (ages 3-6) with pictures of items, and you need to guess the first letter, matching starting and/or ending sounds.  The issue is that she is not recognizing WHAT the pictures are.  Lemon, bear, goat, and a crab are examples.

On the plus side, she was able to type -- not "hunt and peck," but actually type the alphabet on her laptop.  She was also able to type simple words that I would give her.  So my marketing degree is telling me that this skill is in a different part of the brain than memory.  Kind of like music, and tying her shoes.  So now I am trying to find skills that are somewhat automatic, like the typing.  
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Pictures involve a different type of processing than hearing.  It might help her to recognise the pictures if she can trace the outline with her finger.  I say this because it took me a long time to realise why I solved math problems by using my fingers and subvocalising the problem.  The more parts of the brain you engage, the better you become at something.  (I was really good at math.)  If she has math issues, try an abacus.  

Where do you live?  If you were in Houston, I'd recommend TIRR.  Maybe they know a place near you.

 
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Mrs. Rannous said:
Pictures involve a different type of processing than hearing.  It might help her to recognise the pictures if she can trace the outline with her finger.  I say this because it tool me a long time to realise why I solved math problems by using my fingers and subvocalising the problem.  The more parts of the brain you engage, the better you become at something.  (I was really good at math.)  If she has math issues, try an abacus.  

Where do you live?  If you were in Houston, I'd recommend TIRR.  Maybe they know a place near you.
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Thank you.  That is something to try.  

We live near Columbus, Ohio   

 
Maybe these guys have some pointers.  I know there are tons of different things to try.  Used to be that all improvements happened by six months, but that is now known to not be true at all.  Keep on plugging and good luck.  I'll see what I can find that's interesting and new on this subject.  (I enjoy learning about medical stuff.)

 
Mrs. Rannous said:
I know this is going to sound a bit odd, but maybe some of these school learning aids would help.  A lot of these are designed with different ways of interacting with them.  

How are you both doing?
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Thank you for keeping us in mind on these types of things.  We are doing pretty darn good.  Physically she is getting better quickly.  She is retaining new information better, but her old memories and grasp of time is still not there.

 
D-Day said:
The issue is that she is not recognizing WHAT the pictures are.  Lemon, bear, goat, and a crab are examples.
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Just a point of curiosity, but is there a reason she wants to learn these things in a scholastic manner rather than an experiential one? Is it a hunger to be caught up, an embarrassment not to be caught up, a conscious decision to get caught up as quickly as possible or something else? Please find no criticism in this - both your stories are as compelling & inspiring as anything i've read in this forum - or online, for that matter. I'm merely trying to understand your wife's needs & fears & hopes & frustrations the best i can as you guide us thru your process.

 
D-Day said:
Her eating has changed from before the coma, but also continues to evolve for various reasons.  She had always had a pretty healthy, balanced diet.  When she came out of the coma she craved chocolate, but that has subsided to pre-coma levels.  

Some of the changes in diet is probably due to her not remembering the existence of a certain food and/or my willingness or ability to make a certain food.  Yeah, I'm not cooking broccoli.  And I don't make the same dinner food as she did due to time and skill.  COMMERCIAL PLUG... I signed up for Hello Fresh a couple of weeks ago, and this is expanding our menu.  I'm learning to cook much more with this service.  

There are some physical reasons for the change in diet also.  With her medications, thrush had become an issue, and anything that is hard or crunchy has been avoided.  She has taken medication to relieve they symptoms, but she still holds onto the recent memories of eating X = mouth pain.  As I write this, she is very much looking for "cause and effect" issues in many areas of her life.  Perhaps due to having a void of life experiences.  
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thrush is the suck.  she must be taking high dose steroids.  nystatin liquid can knock this out, if it hasn’t already been prescribed.  also, mix in some plain yogurt with cultures.

 
wikkidpissah said:
Just a point of curiosity, but is there a reason she wants to learn these things in a scholastic manner rather than an experiential one? Is it a hunger to be caught up, an embarrassment not to be caught up, a conscious decision to get caught up as quickly as possible or something else? Please find no criticism in this - both your stories are as compelling & inspiring as anything i've read in this forum - or online, for that matter. I'm merely trying to understand your wife's needs & fears & hopes & frustrations the best i can as you guide us thru your process.
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The main driver for teaching her math, reading etc is to exercise the brain.  I didn't want her to just sit around watching TV all day and getting worse.  Speech therapy started down this path, and I just continued.  Early on in this adventure, she wasn't physically able to do too much, so I guess I defaulted back to school curriculum.  Honestly, her not knowing facts (who was the first president) doesn't bother her or me, we just wanted to keep the brain active.  We were just trying to find a baseline of from when she remembers things, but also how best to communicate with her.  

Her biggest frustration right now is spelling.  

 
Chemical X said:
thrush is the suck.  she must be taking high dose steroids.  nystatin liquid can knock this out, if it hasn’t already been prescribed.  also, mix in some plain yogurt with cultures.
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She is on the nystatin, and we just kicked up the dosage a couple of weeks ago.  It does seem to be making a positive difference.  She use to like yogurt before the coma, but does not like the flavor now.  I may need to retry this with the improvement of the thrush.

 
D-Day said:
She is on the nystatin, and we just kicked up the dosage a couple of weeks ago.  It does seem to be making a positive difference.  She use to like yogurt before the coma, but does not like the flavor now.  I may need to retry this with the improvement of the thrush.
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 it has to be plain.  can you tell her it's ice cream?

 
My wife had an  aneurysm and then 3 strokes 4 years ago. Tough going at first with the memory thing. As I’m sure you’ve discovered there really isn’t much in the way of support out there. The most important thing the neurologist will tell you is her capacity to learn.  It’s sounds however good based on what I’ve read.  Wish you the best of luck!

 
boots11234 said:
My wife had an  aneurysm and then 3 strokes 4 years ago. Tough going at first with the memory thing. As I’m sure you’ve discovered there really isn’t much in the way of support out there. The most important thing the neurologist will tell you is her capacity to learn.  It’s sounds however good based on what I’ve read.  Wish you the best of luck!
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Sorry to hear about your wife.  You are correct about the lack of support.  She went through some tests in November/December, we get some results and "see you in July".  No instructions on how to improve her condition, so I'm guessing it just comes down to the passing of time to see how the brain heals.  

 
I’m trying to imagine what it would be like to be in this situation, and it’s painful. I can’t imagine all the memories and the life you built and the experiences you’ve shared, only to wake up one day and have the one you love say “who are you?” Sorry. I’m sure you’ve gone through this over and over, but when you’re reading a fantasy football message board and have tears streaming down your face it must be 100 times worse in real life. 

Hope you find some answers. Glad her health is getting better, one less thing to worry about. 

 
Have you reached out to OSU at all? Perhaps the neuroscience department (Assuming they have one)? They may have more resources than you have, although I’m sure you don’t want your wife to be a test subject. They may be willing to spend more time than doctors though, perhaps have different equipment/tools at their disposal, or could help develop a curriculum to help the learning process as it works with her now. 

 
Snorkelson said:
I’m trying to imagine what it would be like to be in this situation, and it’s painful. I can’t imagine all the memories and the life you built and the experiences you’ve shared, only to wake up one day and have the one you love say “who are you?” Sorry. I’m sure you’ve gone through this over and over, but when you’re reading a fantasy football message board and have tears streaming down your face it must be 100 times worse in real life. 

Hope you find some answers. Glad her health is getting better, one less thing to worry about. 
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One thing that made my transition and acceptance of the situation easier was thinking early on that her memory loss was a temporary situation.  I initially thought it would only last a couple of weeks.  Then I thought it would go away after the liver transplant and the end of the encephalopathy.  It was about three months into it that I got more concrete information that she would never ever be 100% back.  That was tough to hear, and tough to deliver the news to our family.  So now we play the waiting game.  Once we meet with the neurologist in July, I will have a better understanding of where we may end up, and I will push for more help in her recovery.

Some may wonder why I hadn't pushed for more help earlier.  Honestly I was more worried about her survival until the transplant.  Now my priorities can change. 

 
D-Day said:
Sorry to hear about your wife.  You are correct about the lack of support.  She went through some tests in November/December, we get some results and "see you in July".  No instructions on how to improve her condition, so I'm guessing it just comes down to the passing of time to see how the brain heals.  
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No worries.  I just learned how to be patent...very very patent. Often having to repeat what I say to her a couple of times a day.  It does get tiresome hearing the same stories from her over and over and over.  :)   As far as seeing how the brain heals, I think the brain is like any muscle, it needs to be worked out.  For my wife it was mapping.  She couldn't do mazes at all.  So we focused on those and on words.  I used K through 6 grade worksheets with her and I think it helped.  

As far as driving that took her some time.  She had to do lessons with someone who specializes in teaching driving with someone like her.  She did pass and is driving now.

One thing I think is important is always update caring bridge.  Keep people interested in her story.  This will keep the help coming but eventually the help will stop as people just move on.

 
Man, I cannot imagine the strength you have.  The vow "for better or worse" must really mean a lot to you.  I admire your courage and your commitment.  

 
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JoeSteeler said:
sorry if this has been asked/discussed...what was the original medical procedure that caused the coma?
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The following is from the fatty liver thread in November:

Please take care of your liver boys and girls.  Really bad things can happen if your liver fails.  Example:  

My wife was diagnosed with Primary sclerosing cholangitis (PSC)  (think Walter Payton) in 2010 and had the left lobe removed then.  Not much happened until 2017 where due to the complication of cirrhosis, she developed Portal hypertension and Esophageal varices.  Varices are life threatening if they rupture, and my wife experienced two ruptures with what the doctor called "Impressive amount of blood loss... and you don't want a doctor using the word 'impressive' when talking about blood" in July.  Thankfully she was in the hospital when they occurred, or she would not have survived.  

Fun Fact:  When the hospital Chaplin comes to see you in the ICU waiting area, he's not just making the rounds... he's there to see YOU because your loved one isn't expected to survive.  I caught onto this the second time around.

Hey, fatty liver guys, scared yet?  Scared enough to take corrective action?  Keep reading, oh it gets better...

After the second varices rupture, the doctors performed a Transjugular intrahepatic portosystemic shunt (TIPS) procedure.  Basically this causes the blood to flow through the liver more easily, however the liver does not clean the toxins out of the blood which can (and did) lead to Hepatic encephalopathy (HE).  Read this one carefully boys.  You can develop HE even without going through what my wife has gone through.  Well, my wife was unlucky enough to skip grades 1, 2 and 3 of HE, and straight into Grade 4 (coma) for six days.  

The HE coma, led to her having seizures, >>> brain swelling >>> permanent brain damage >>> revision of the TIPS to lower the HE >>> more varices bleeding that the doctors feel lucky to stop (by the way, having to call your family to come to the hospital to say their goodbyes--twice--not an easy thing to do).  Basically she is dealing with amnesia and having to relearn just about everything.  Although she is getting better, it has been a bear.  Here's hoping for a liver transplant!  There's more, but I will stop here.

So, if you are having any sort of liver issue, I hope my little tale will scare you enough to take some positive actions to improve your health.

tltr/  Don't mess around with your liver, because the consequences of cirrhosis will F you up.

 
boots11234 said:
No worries.  I just learned how to be patent...very very patent. Often having to repeat what I say to her a couple of times a day.  It does get tiresome hearing the same stories from her over and over and over.  :)   As far as seeing how the brain heals, I think the brain is like any muscle, it needs to be worked out.  For my wife it was mapping.  She couldn't do mazes at all.  So we focused on those and on words.  I used K through 6 grade worksheets with her and I think it helped.  

As far as driving that took her some time.  She had to do lessons with someone who specializes in teaching driving with someone like her.  She did pass and is driving now.

One thing I think is important is always update caring bridge.  Keep people interested in her story.  This will keep the help coming but eventually the help will stop as people just move on.
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Thanks for the info.  I see a lot of similarities in what we are going through.  I have pretty much stopped updating people thru facebook because I didn't want to over do it, but even when I was updating I could tell people were moving on.  I have actually used this thread for deeper discussion about her mental condition.  

 
Mrs. Rannous said:
When you see the neurologist, you might ask about hyperbaric therapy.  It might be useful.
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I am going to start a list of things I want to discuss with the neurologist.  There are things out there like hyperbaric therapy that I didn't even know existed, or should be considered for treatment.  Thank you for bringing these to my attention. 

 
Took my wife out driving today for the first time.  I had to teach her what the shifter was, and what the P, R, N, and D stood for.  So, still needs to reorient herself behind the wheel.  The act of driving went really well other than pushing on the gas a little to hard a couple of times.  She used the turn signal automatically, so I'm thinking the act of driving is guided in the part of the brain that was not damaged.  I believe navigation may be an issue, but a GPS should solve that problem.  When I drive, I have been having her navigate a few times, so I will need to do this more for the places that we visit most often.

She is two months away from having the transplant, and physically she is doing fantastic.  She is walking a 2+ miles per day, and could go more if the weather cooperated and us not wanting to push too much this early.

 
My wife went to a girls night out at one of her friend's house.  There were about 9 of her friends that she has known for over 15 years.  Other than a couple that she has been around since the coma, she did not recognize the other women.  They looked familiar, but other than that, she had no recollection of them.  The women would have conversations going--kids, local activities etc., and my wife was unable to follow along.  Think of it like going to your significant other's home, and meeting their family for the first time.  They banter back and fourth, talking about family members, events from the past, try to involve you some, but in reality you are not understanding what they are talking about.  My wife had fun, but felt like a stranger.  Very much like the new kid in town not knowing anyone, but everyone knowing you.

And thinking about this, I would assume that she felt the same way with getting to know me, our kids, and my family.  Everyone talks, and we all forget that much of the conversation is new information for her.  The other "wow" moment I had:  If I was not around when she came out of the coma from last July, and we just met up again today, I really don't think she would know who I was, what kind of relationship we had, nor would she know who the kids were.  Those memories from before the coma are still missing.

I am very fortunate that she is able to relearn and retain new information.  It still takes multiple meetings for her to remember people and their names, but I don't think that is too unusual even for someone who hasn't had a brain injury.

 
'Tis a very special curse and blessing been visited upon you both and i almost feel guilty for how fascinated i am by it. And the same perspective that has helped her back from nothingness makes it ring in my heart on these pages. I pray you're keeping a journal, D-Day, because your story and its telling strikes at the core of who we are and should be heard. Thank you for what you're doing and saying.

 
In a bad way, this is like a sitcom gone wrong.  Your patience and tone are astounding to me.  I suspect dropping an anvil on her wont reverse this like I've seen on TV.  does she understand she got sick and something happened or does she not even understand how she got here?

 
Physically, my wife is doing pretty darn well.  It has been six plus months since the transplant.  There are some minor medical issues, but we are dealing with those.  The biggest issue she is having is tremors which the doctor thinks is from her anti-rejection meds.  The removal of a seizure med (dilantin) has enabled the doctor to start lowering the anti-rejection meds.  

Anxiety levels with her are higher, and little things get to her more often.  The doctors don't seem to be wanting to put her on any more meds at this time.  The feeling I got from her neurologist is that the meds that she would prescribe may reduce the effectiveness of the anti-rejection meds, and thus cause her to need more, and increase the tremors, which may be causing the higher anxiety.  Vicious circle.

Memory issues:  We have seen the neurologist and have done test with a neurological psychologist.  The end result is that the memories that she has lost are most likely not coming back.  She basically has memories from early childhood (age 10-ish), but after that--gone.  The good new is that she is able to learn new information and does pretty well retaining it.  My wife is self-motivated to learn.  She is currently doing 1st grade work to build a base.  She is beyond most of this, but we thought it best to start from the beginning.  She sees this as "brain exercise" and the neuro-psychologist thinks that my wife wanting to self-learn is out of the norm for her patients.

Sooooo, I asked the neuro-psych about options to help my wife.  She said there isn't much more than what we are doing, and that unless something changes, there is not a real reason to see her again.  Again, telling me that my wife is out of the norm, and there isn't much out there to help, so I need to keep making things up on my own.

I had a conversation about my wife with a person who is a sci-fi geek.  He noted that she is like a time traveler from the 70's to 2017, and how many things have changed over that period of time.  She has done pretty well with learning the new technology except for the TV remote, but she always had some trouble with remotes.  Most likely because she's a woman (amiright)

 
As an example of how some words/names have been lost to her, we went to the zoo a couple of times.  We saw polar bears, giraffes, goats.  She has no clue what they were, and didn't know anything like those animals existed.  The smile on her face when she discovers new things though makes it much easier to work with her to re-learn a lot about our world.

We do have vacations planned of Disney World in January and a European riverboat cruise in September.  She is really looking forward to seeing Mickey.

 
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