When you forget how to open a door - venting

[grommet]

A couple of days ago I came home to my front door and .. that was it. I no longer knew how a person gets past a door. It came back to me but for a little while I simply sat looking at the door. I knew there was a way to open it but I had no idea how that was done. I had zero concept of keys or any other thing that opens it. So I just sat there. My brain taking me to that place, again. The place where I stare at a telephone and recognize that it is a thing but I don't know what kind of thing. This time it was my front door. After a bit, like it usually does, the information was available and I knew about doors. I got my key then my remote door opener and I was inside.

Explaining what it's like living with a damaged brain .. I haven't been able to communicate that to people who don't. I haven't been able to get myself to a support group and I don't know when I will. In the meantime I have these little adventures alone and those who care about me try to understand. How do I tell them it isn't like forgetting something, it's the total absence of that information. It doesn't exist. Then when my brain does whatever it needs to do to reset, the information comes. It doesn't come back like a memory either, it comes as brand new information as if I landed on the planet having lived a whole life never knowing about the thing, then I am taught about it.

I have lost days, seasons, years, entire knowledge of friendships. Almost always, these things come back. But how the heck do I convince people that I am not kidding, I honestly don't know who you are, at all, period. Again, my friends come in and help and they are wonderful.

I guess I just needed to vent.

[MSWIFE1]

Vent away. While I don't know about brain injury you described how I think my husband feels too. He has MS and sometimes I think the nerves in his brain are misfiring because I can see that same empty look you described in his eyes. He's never described it like you just did but that helped me to better understand so try telling your family and friends the same thing you just said here.

[grommet]

I'm touched. I hope writing something about myself did help you. I think it would help me to talk with others who have these experiences. Still not ready for a support group, I think I will find people as I go along and we can share our experiences. The strangeness of having no knowledge of something then later, knowing it, is something I would like to hear about from others. I relaxed into it years ago, realizing it was going to last as long as it would last. Two experiences stand out. The first time I stared at a telephone on a desk and had NO information on what it was, and a mutual friend who it took six months before I could remember that I knew him. I've wondered how to have a job when I don't know if I'll have a "funny brain day" or moment. Working on it. :-)

Vent away. While I don't know about brain injury you described how I think my husband feels too. He has MS and sometimes I think the nerves in his brain are misfiring because I can see that same empty look you described in his eyes. He's never described it like you just did but that helped me to better understand so try telling your family and friends the same thing you just said here.

[Sog]

Hi grommet,May I ask what kind of brain damage you have? Is there anything you have looked into like stem cells to help repair it? I am also dealing with brain damage so I empathize with anyone who has the same however my greatest focus is on finding something to fix it and I have done lots of research for this.take care,sog

[grommet]

Sog, I was born with damage and have lived with it so long that although it frustrates me and limits me I wouldn't consider treatment. As I grow and change I need self-acceptance and strategies. That is something I think I could get in group support but though I have checked the resources out I haven't been comfortable enough to go. If I was newly injured in the brain I could see wanting things to change and maybe at any cost but it's who I am. I am middle-aged. I would rather do the little things that help rather than take a large risk with medical treatment. Just my view.

It's funny, years ago I was with a friend who has CP and we met someone with CP and severely impaired speech. My friend almost instantly understood what was being said. I recognize "brain people", not always, but often enough that I can let other people know when they need to ignore something or offer a little more support. People with injuries who have sudden mood changes scare me. It's not their fault, it's the damage, but still it's hard for me to manage when that's happening. Everybody is different. I hope you do find some cure for yourself. I do like reading science fiction about people going through radical brain treatments and the changes they go through. I remember one character, after treatment, not remembering anything of his old personality and even wondered why he would have acted that way. I am me, I don't work right but still, I am me and I'd choose to stay who I am. As far as other disabilities go, oh yeah, I'd change those in a second!

[gjnl]

Just saw this a few days ago in our local newspaper:

Building a 'memory bridge': Livermore lab researchers receive $2.5 million for implants to restore functioning in brain-injured patients

http://www.mercurynews.com/bay-area-...hers-receive-2

"A prosthetic device embedded in the brain that would bridge gaps in the brain's memory functions. It would be for service members, veterans and all those with traumatic brain injuries.

Researchers said it would sense memory deficits, encode neural signals and bridge gaps in the damaged brain, allowing the continued formation of new memories and recollection of old ones."

All the best,
GJ

[grommet]

GJ, I checked the link, that was very interesting. Yes I would, if there was a simple chip or something similar and small, be interested. If something wouldn't affect any other part of me, just improve memories, that would seem like a gift. Over the years as I have been told about experimental brain surgeries I have said that I'll sign up to be the 1,000th patient. Scary thing having someone work on your brain but then if I could have a more normal life, I would be interested. I guess my feelings about the situation are more complicated than I thought. Thanks for the link :-)

Just saw this a few days ago in our local newspaper:

Building a 'memory bridge': Livermore lab researchers receive $2.5 million for implants to restore functioning in brain-injured patients

http://www.mercurynews.com/bay-area-...hers-receive-2

"A prosthetic device embedded in the brain that would bridge gaps in the brain's memory functions. It would be for service members, veterans and all those with traumatic brain injuries.

Researchers said it would sense memory deficits, encode neural signals and bridge gaps in the damaged brain, allowing the continued formation of new memories and recollection of old ones."

All the best,
GJ

[rlmtrhmiles]

grommet, have you discussed this with a doctor? This sounds like something is starting to happen. You could have been having some type of mild seizure from what you describe. This is why I suggest you take what you wrote here to a doctor and see what they have to say. Has this happened more than once?

[Sue Pendleton]

Grommet, have you ever discussed this as an adult with a neurologist? With everything new we have learned about the brain many people have benefited from cognitive therapies. It is basically exercises to get another part of your brain to take over the missing areas. I know there is a place in Florida that specializes in people who have had strokes but there are less intense practitioners elsewhere. I think I would find those missing times very scary. Good luck.

[grommet]

No actually I never did think of that. You have me thinking about it now. As far as scary, well yeah it is but I've been experiencing it for so long that I just started going with it. I think the first time I got scared was when I forgot two weeks of my life. I tried but nothing would remind me of it. Talking to a neurologist might something I should do. I find it so difficult to navigate the health care system I shy away from it. A few weeks ago I peed a lot of blood for more than a week and I just waited it out. Off topic maybe but I do find the system intimidating especially with my concentration and memory difficulties. I often don't answer when I am asked a healthcare question regarding when I did something or how often, honestly I want to say, "How would I know?". You've got me thinking about the neuro thing. If there is a therapy I would do it. I have heard many times about re-training the brain, using different areas. That's okay with me. Anything that helps. Thank you for the idea :-)

Grommet, have you ever discussed this as an adult with a neurologist? With everything new we have learned about the brain many people have benefited from cognitive therapies. It is basically exercises to get another part of your brain to take over the missing areas. I know there is a place in Florida that specializes in people who have had strokes but there are less intense practitioners elsewhere. I think I would find those missing times very scary. Good luck.