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Old 06-10-2005, 02:32 PM   #1
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Permanent Memory Loss

Hello this is my first post. Not really sure how to start it so I will just get down to it. My fiancé has a tumor in the part of her brain that stores memory. Next week she will be going through a process that should eliminate the tumor how ever at the cost of her short term memory (losing all memories up to 5 y ears) I have only known her for a year and a half. I don't want her to forget me. She doesn't want to forget me. What are things that will help her memory of me? Tips to help her remember?

 
Old 06-10-2005, 03:19 PM   #2
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Re: Permanent Memory Loss

Following the procedure, and depending on her cognitive impairments, she made need to be evaluated by a pneuropsychologist (who can measure memory, word retrieval, etc.). In addition, because a specialist of that type may not be available to you, she should probably be evaluated by a Speech/Language Pathologist (especially one who has had experience with acquired brain injuries - even though hers is a tumor) who will develop a plan of care and assist your with re-learning techniques and skills. Don't give up on her. THere is help out there. chris

 
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Old 06-10-2005, 04:10 PM   #3
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Re: Permanent Memory Loss

Speech and reasoning will not be affected. Only her memory according to the specialists. What I was looking for were ways to help her remember me because after the procedure she won't know who I am. Not because she will be slow, but because her short term memory will be gone, she won't remember the past 5 years. We spend every day together and have had a lot of special moments together, I just want to know the best things and ways to help her remember. Things that I could do? The doctors suggested wearing the same outfit as the last time she will see me. I'm looking for suggestions like that if anyone can help.

 
Old 06-10-2005, 06:19 PM   #4
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Re: Permanent Memory Loss

WHile her memory will be affected, it is speech therapy that looks at ways to restore that. Things you could do? Make a picture album (chronologically) together (so that she will be a part of it) and allow her to pick the pictures that are the most important and memorable. Make a tape of her favorite songs (over the past five years). Make video records of her family, friends, pets, etc to trigger her memory. Don't introduce new things while she's healing until such a time as it is recommended. Then, slowly begin to establish with her "new memories."

 
Old 06-11-2005, 07:05 AM   #5
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Re: Permanent Memory Loss

As far as I know, it's very hard to accurately say how much or little memory is lost with a particular brain injury, because we don't have some rigid "memory bank" that we can locate, though it may feel like that sometimes.

Although the Docs say she won't know who you are, I wouldn't be so certain. I saw a documentary about a man who lost all his memory - short-term, long-term, you name it. He couldn't even remember what he'd done 10 or 15 seconds ago. But he still remembered the love he had for his wife, even if he didn't remember much else.

Perhaps it'll be a similar situation for you. It's impossible to say for sure, but I wouldn't give up hope.

 
Old 06-11-2005, 08:52 AM   #6
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Re: Permanent Memory Loss

Thanks bin man

 
Old 06-11-2005, 12:04 PM   #7
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Re: Permanent Memory Loss

Hi--I have some exp w/short term memory loss, but mine was due to brain swelling from liver failure. It was quick-I went to sleep, lapsed into a coma, & husband couldn't wake me int he morning. I woke up in ICU a few days later, I recognized my husband, but wasn't quite really sure who he was. I saw the sweater he was wearing & it kind of brought me back because I recognized it. He also had tv/music channels on that he knew I'd like if I woke up. I know that sounds dumb--but that's how it was for me. He was told to bring pix of all of us together(him, me,the kids) &tape them to the walls b/c IF I woke up, I'd not know anyone. When I did wake up, they said if I got any memory back it would be like a 5 yrs lapse....I'd maybe know my 11yr old but probably not my 2 youngest who were just over 5yrs at the time. I did recognize them--after a few days. He did a good job of getting pix that grouped ppl together-(immediate families, kids only, neices/nephews only, etc...ppl in my dept at work ) which helped. CFLAS had a great idea--pix album and videos and music...I'd look at the old ones you guys have, but also take new ones together and put them an album also. Make her part of the actual pix taking if you can. For me, if I had a deeper connection to it before the coma, it seemed to stir things inside me--and that made me ask ?'s b/c I had a feeeling about it. I did ask a ton of ?'s and he had to be patient. Sometimes bits/pieces came back--but with time I noticed a little more and a little more came back. A lot of things I totally forgot-but when ppl talk about something, they fill me in and sometimes it brings some back--maybe not all the details--but enough so that I know I was there. Sometimes it doesn't. I do sometimes feel like I missed the party. I still have have A LOT of short term memory loss--but I carry a small pad of paper, post-it notes and a timer to help me. Things float thru my mind so quickly, if I don't write them down immediatly, I'll forget. Sometimes when I'm talking, a word is on the tip of my tongue--but that seems to be random and improving. a little. Sometimes I don't know what a word means when I hear it. I got used to it-but it was frustrating. Memory is so goofy,and everyone is different...You're an angel to help her and care so much!!! She's very lucky. I hope she has an easy time thru her surgery. I know it's scary. Knowledge is power and you're educating yourself ahead of time. Even tho I'm not in your exact situation, I hope this helps. Any other ?'s--just ask.
HAppyElf/GIna

 
Old 06-11-2005, 10:03 PM   #8
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Re: Permanent Memory Loss

Hi thank you much for the post, it has given me more hope. I took her to the beach today for her birthday day, her real bday is on tuesday but I wanted the day for just her and I. We braught a camera and used up a roll of film. A little about her. When she was born she had an amonia (A. I think that's what it was and B. I think that's how you spell it?) After this, her heart developed a hole in it and she has never made white blood cells since. So she has been very sick her whole life. She has cancer in her spine, it doesn't spread through the bone it just deteriates it. It does however spread through tissue. About a month ago the dr's said that it had spread to her lungs and she was not expected to see her next bday (the one coming up on tuesday) and that there was nothing they could do for her. Then a week later, the doctors discovered the hole in her heart had closed enough that they could try freezing her heart and injecting white blood cells into it, hoping the heart would recognise and start creating white blood cells on it's own. She had also developed a tumor in her brain, in the lobe/section that stores memories. She went and had blood work done after the procedure (which was scary, she had a 60% chance of not making it because she went into shock from the pain of the procedure - she can't have sedatives or anti biotics because she has no immunities) The blood work showed she was making white blood and everything was going to be fine. A week later she got a call saying the white blood cells were just empty shells and she wasn't making immunities. They said due to risk of infection she had a 65% chance of surviving the operation they have to do on her lungs. The next day the hospital called and they told us she IS making immunities just very slowly. They had been looking for ways to speed it up but I don't think they had found any. This was a really rare case because people almost always make the proper immunities after that procedure. So now next wednesday, they are going to inject her with enriched blood and they believe it should take care of the problem with her lungs, and the tumor. If it does work she will be able to live healthy for the first time in her life. The downside is she told me the reason she has come this far is because of me, and she isn't going to remember me. She is very scared because if this works she will lose her short term memory of the past 5 years. We have only known eachother for one. We both hope it works but at the same time we are both scared when she wakes up she's not going to remember me, or love me as much as she does now.

 
Old 06-12-2005, 05:26 AM   #9
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Re: Permanent Memory Loss

I don't think there's anything I could add without sounding pathetic - your situation's a more difficult one than I think I could ever manage.

Just thought I'd wish you all the best for this. Hopefully it will turn out ok in the end.

 
Old 06-12-2005, 06:57 AM   #10
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Re: Permanent Memory Loss

T176--
I know you both feel very defeated right now. She has certainly been through it--it seems as if she knows no different in life. I dont' know what to say except I'm so sorry. I want to encourage you--but I know it's a dire situation. I know you are hoping and praying this works for here-but it is bittersweet--the positive outcome is darkened by the impending memory loss. You have given her the BEST yr of her life--hang tough--try to give her the rest also. You and she will both need a lot of patience-and you have the patience of a saint. The beach was a really cool idea--sort of a double celebration-her life and her extended life they said wouldn't happen. That is awesome--that's one hurdle out of the way. IT sounds like you guys are on such a rollercoaster...yes it works, no it did, yes it did, but slowly, etc...that in and of itself is draining. Everyone is different, and their memory loss is different--and I know they've given you a pix of what to expect--and that's all you have to go on. So keep on doing what you're doing. I will post more later...small emergemncy--(kids) Gina

 
Old 06-15-2005, 03:16 PM   #11
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Re: Permanent Memory Loss

Today she went for her procedure. Talking to her was very difficult, she doesn't know who I am at all. I only got to talk to her online because she wasn't allowed to have visitors. The part that hurt the most is when I asked if she had a red ring with her (the engagement ring) and she told me she didn't know what ring i was talking about. Definately have got a long journey ahead of me.

 
Old 06-16-2005, 10:57 AM   #12
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Re: Permanent Memory Loss

Oh T176
I'm so glad you posted--was thinking abt you two. I'm so sorry she doesn't know you. How is she physically? Did she make it through the procedure ok?How are YOU doing? I know this is a really frightening thing...you're really scared--and empty right now--but it's still new...give her time. And give yourself time too. Just b/c you're not the "patient" doesnt' mean you need time to adjust to this. She may not be allowed have any jewelry if she's in the hosp--no matter what type. If you enter the hosp w/it on, they usually ask you to give it to a family member. Were you there when she went in? Did she have it on? Is she in ICU?(is that why she can't have visitors?) You said she doesn't know you at all--how did you introduce yourself online--how did she know to reply to you? I know this is all very disheartening--but please give it some time before you feel defeated. You are a wonderful, caring man, and a huge part of her life...She's so lucky to have you as her fiance. You have the patience of a saint.....the mere fact that you're so worried a head of time was a testament to your love for her. That, along with the faith you must have, will carry you both through. Has she recognized anyone--mom, dad, anyone she's known past 5 yrs? What did the drs reccommend as a way to reintroduce you back into her life? Are her mom and dad helping her remember you--like, tell her all abt you and your yr long relationship...sometimes when it comes from ppl they DO remember and trust, the patient accepts it more readily and tries harder to remember. I know it's not a matter of her "trying" b/c I'm sure she is trying really hard and wants to--but I don't have the right word for what I want to say-maybe, like, her spirit will be more open to the memory coming back... If my husband or Mom told me abt it, it was something I was accepted as knowing it was there once-but couldn't remember. Another question--does she know she has memory loss? Or does she think she just doesn't know ppl or things. I didn't even know I had memory loss for a couple of days. Please post when you can. I'm praying for you both and want you to now I'm here if you need to vent, or whatever. Sometimes that helps alot. Take care of yourself too....Psot when you get time....Gina

 
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