[emme727]

I've been reading this forum for the last few weeks. It has been a wonderful support system! It took a while to be able to get registered, and log in, but here I am.

In early Feb (2 months ago) I was in a MVA with a friend. She flew through the windshield and I was belted. The car flipped over end once and then rolled 3-4 times, landing on it's hood). We were alone for a long time (until I located a my cell and called for help -- it was a very rural country road). We do not know if I lost consciousness or not. I do remember the moments leading up to the accident, the accident itself, crawling out of the car and helping my friend. I remember almost everything until Amish buggies and the ambulances arrived. After that, I recall pieces. I remember being asked my age and the month. I know that my answer in my head was wrong, but I managed to correct myself and answer correctly. A nurse telling me that nodes were seen in my lungs (I kept asking her what a seamless node was.) Follow-up, lungs are clear. After that, I recall very little for weeks. But I do know that we picked shards of glass out of my head for days.

My family doc dx me with a moderate concussion and weeks later with post concussive syndrome. CAT scan was clear. MRI showed bulging discs (from impact?) but not done on head.

I could not walk on my own for almost a month -- I was very unsteady and would lean to the right. Constant ringing in my ears, headache from one temple to the other. Nausea. Noise sensitivity. I lose entire conversations. I search for words -- for example, we have a farm and a pet rooster, named Roo. I coudln't remember what he was called (a rooster), and called him a "cockle doodle doo." I also sometimes hear things wrong... my wife was going to go get feed and I heard "feed the get go." The other day my she told me about something that Roo did and I couldn't place who Roo was.

I have found that I have lost skills. One day I was knitting and suddenly couldn't remember how. Spinning wool pushes me over the edge. I was a baker in a restaurant (breads, pastries, desserts, etc). and now I can hardly make a loaf of bread without getting confused and tired.

Writing is easier than speaking. I do have simliar issues (word seeking), but I can edit. Yay! I had to take disability from work -- I am a professor, and can't teach at the moment (heck -- constructing a sentence takes too much brain power). I find in writing I forget "the, is, be", etc and turn sentences around.

I have had some eye issues -- I'll be looking at something and then it seems that my brain decides to look out of my other eye (instead of my dominant) and the entire room shifts to the right. or when I try to read, words melt off the page. One day I blinked and lost sight in one eye. Then I blinked and it returned.

What short term memory?

spots on my head still hurt!

We are trying to learn coping strategies. (go with the flow, to do lists, chalkboard, etc). Removing myself if I get tired/overwhelmed -- with kids at home, who wouldn't?

I remind myself every day that I am lucky to be alive. (my friend is alive -- after breaking nearly every bone on her right side and remaining unconscious for about 3 weeks. She will be able to return home in about a month.) Her brain is working much better than mine!

I am also trying to look at this as a lesson form the universe. I am a (very) type A personality. I would rather have a broken bone -- I know how long that take s to heal. Of course, we have no time frame here. So, I'm trying to tell myself that this will take time and I can't push it. I can't control it. Lesson to let go and surrender to the healing process. Sigh. I fight that one. I see an occupational/speech therapist and my doc on Monday.

Anyway, hello. It is nice to have a place for information and to "meet" others. At the moment I can speak to my spouse, 5 children, goats, pigs, chickens, dogs, and vegetables. It's been very isolating and boring!

Emme

[Lightrail11]

Hi Emme and welcome. I can relate to your story.

On November 29, 2010, I was walking across the street and was hit by a light rail commuter train. Result was traumatic brain injury (TBI) and multiple fractures (pelvis, ribs, skull). Life saving craniotomy was performed that evening at St. Joseph’s hospital in Phoenix. Additional surgeries were to repair open book pelvic fracture, repair collapsed lung, and remove a pulmonary embolism. Total hospital stay was two months, 1 in ICU followed by an additional month in neuro-rehab. Upon discharge, neurological testing revealed deficits in short term memory, executive functioning, and spatial recognition.

I have retrograde amnesia going four days prior to the accident, and approximately 5 weeks of post traumatic amnesia. Other than that, neuropsychological examination five months post accident indicated a return to normal cognitive functioning, and I returned to work approximately 6 months after the accident.

Since recovering I have become interested in brain functioning, emotional well being, and memory development, so I was also happy to find these forums. I still deal with periodic depressed moods but for the most part glad to be alive and looking forward to the rest of my life.

Best to you as you continue your recovery journey.

[Mark in Idaho]

emme,

Wow, what a story. Glad you are alive.

It sounds like you are going through all of the normal symptoms, maybe just a bit more intense.

Using your computer to put your thoughts together will help. It would be nice if we could arrange our thoughts then proof them before saying them. At least we can on the computer.

What can we do to help you?

It appears you have a good understanding of how to modify your life. That is the first thing and often the hardest. Good for you.

Have you considered trying to do online tutoring for your students. Or, did the classes get canceled? It may be too much cognitive effort but that is an individual issue.

I find it curious that the Amish buggies got there before the ambulance. But the tortoise always beats the hare. I wish I lived where I could use a buggy. A donkey would be a great way to pull a buggy or cart. They are very intelligent. And, they live life at the speed of a PCS brain.

Let us know how we can help you. Lots of experience with PCS here.

My best to you.

[emme727]

Originally Posted by Mark in Idaho

emme,

What can we do to help you?

It appears you have a good understanding of how to modify your life. That is the first thing and often the hardest. Good for you.

Have you considered trying to do online tutoring for your students. Or, did the classes get canceled? It may be too much cognitive effort but that is an individual issue.

I find it curious that the Amish buggies got there before the ambulance. But the tortoise always beats the hare. I wish I lived where I could use a buggy. A donkey would be a great way to pull a buggy or cart. They are very intelligent. And, they live life at the speed of a PCS brain.

Let us know how we can help you. Lots of experience with PCS here.

My best to you.

I guess I am struggling with ways to help myself. I can get some of it intuitively and think that what helps my children remember tasks, may help me. However, it is frustrating. My wife has starting attaching notes to me, so that I remember what to do. We have 5 children (4 at home). She is a chef and works in town. I can't drive and am often solely responsible for the 4 (all school age: 5-13 the eldest is away at a performing arts school).

I had to give up my classes. I was teaching online and couldn't even respond for a month or so. Another prof took over. A few days before the accident, I had been laid off for next year (student numbers down), so it is a double blow. I can't even apply for anything yet.

We live in the middle of nowhere. There are more Amish households on the road where the accident took place than non-Amish (English) households. I am thinking about a donkey for a guardian animal...

[ginnie]

Welcome to Neuro Talk. I am sorry you have TBI. I hope your recovery continues. Sounds like the animals on the farm are a good place to start with speaking again, animals are good to talk to anyway. They don't tell you when you make a mistake and are often kinder than people.
What were you a professor of? Hope you get to go back into your chosen occupation. all my best you you, and again welcome to Neruo Talk. ginnie

[emme727]

Originally Posted by ginnie

Welcome to Neuro Talk. I am sorry you have TBI. I hope your recovery continues. Sounds like the animals on the farm are a good place to start with speaking again, animals are good to talk to anyway. They don't tell you when you make a mistake and are often kinder than people.
What were you a professor of? Hope you get to go back into your chosen occupation. all my best you you, and again welcome to Neruo Talk. ginnie

I teach graphic design. Unfortunately, I now look at a piece of work and can't speak about it. I can see that something doesn't work, but can't tell you how or why. It is very frustrating.

I had been working on a doctorate in naturopathy. (change of fields). I can't understand what I read any longer, but hope that it will return. My hope is that my dissertation will turn to tbi research.

Animals are great. If I can't remember their names, they don't get upset -- I just end up calling everyone "goat" or "pig."

thank you for the welcome!

[EsthersDoll]

Welcome to neurotalk! I'm sorry to hear about your struggles.

You are still very early in your recovery. The more rest that you can give your brain - the more energy it has to put towards healing.

I would take doing anything that seems difficult as a sign that you need to take a break from it. Taking care of kids can be very demanding. Anything that you can "let go" of doing will most likely allow you to heal faster.

I also work at several universities. I was "higher functioning" before the accident I was in and I'm also a Type "A" personality. The best thing you can do right now for your brain's health is to let go of all the little things that bother you. If your brain is tired and you do the dishes because you don't like seeing the dishes in the sink it might tax your brain too much and set you back in your recovery. I know how hard it is, but you're going to have to try. There will be time for indulging your Type "A" personality again in the future. For now, consider yourself to be in recovery.

Some people spontaneously recover after a concussion and experiencing PCS.

Stress and anxiety are known to cause ill effects on the brain while recovering from a concussion. Keep calm and carry on.

Since your studying to be a naturopath, let me recommend some supplements that have helped me in my recovery. (I've been recovering for more than 20 months... but my Dr. has recently given me a very good prognosis.) My neurologist has okay'd most of these at this point, please make sure your Dr. is okay with you taking them too.

-All your vitamins and minerals, including a good B complex
-daily B12 shots if you can, sublingual if not
-Phosphatidylserine
-CDP Choline
-Acetyl L Carnatine
-BCAA's
-Omega 3-6-9 oil
-D-Ribose powder

Stay away from caffeine, alcohol, MSG and processed foods.

For now rest as much as you can, but balance it with exercise. The rest will allow your brain to let itself heal and the exercise will give it more oxygen to do so.

Mark In Idaho has pointed out to many people here that the more symptom free days that you can string together, then the more likely it is that you're allowing your brain to heal itself. Symptoms can be a warning sign that you are pushing yourself too hard to do something.

Don't worry about your finances right now (although I know it's hard not to) just focus on the most important thing - letting your brain heal.

[emme727]

Originally Posted by EsthersDoll

Welcome to neurotalk! I'm sorry to hear about your struggles.


You are still very early in your recovery. The more rest that you can give your brain - the more energy it has to put towards healing.

I would take doing anything that seems difficult as a sign that you need to take a break from it. Taking care of kids can be very demanding. Anything that you can "let go" of doing will most likely allow you to heal faster.

I also work at several universities. I was "higher functioning" before the accident I was in and I'm also a Type "A" personality. The best thing you can do right now for your brain's health is to let go of all the little things that bother you. If your brain is tired and you do the dishes because you don't like seeing the dishes in the sink it might tax your brain too much and set you back in your recovery. I know how hard it is, but you're going to have to try. There will be time for indulging your Type "A" personality again in the future. For now, consider yourself to be in recovery.

Some people spontaneously recover after a concussion and experiencing PCS.

Stress and anxiety are known to cause ill effects on the brain while recovering from a concussion. Keep calm and carry on.

THank you! We are trying. My wife and I were legally married 2 weeks before the accident. Unfortunately, we have encountered many issues which added stress to the situation. Nurses refusing to speak with her, insurance companies, etc. We have even offered copies of our marriage license. That added a lot of stress. Fortunately, we just had papers drawn up by our lawyer, which gives her ability to make decisions for me. I hope that this will relieve some of my stress and allow me to focus on healing instead of the circus.

Since your studying to be a naturopath, let me recommend some supplements that have helped me in my recovery. (I've been recovering for more than 20 months... but my Dr. has recently given me a very good prognosis.) My neurologist has okay'd most of these at this point, please make sure your Dr. is okay with you taking them too.

-All your vitamins and minerals, including a good B complex
-daily B12 shots if you can, sublingual if not
-Phosphatidylserine
-CDP Choline
-Acetyl L Carnatine
-BCAA's
-Omega 3-6-9 oil
-D-Ribose powder

Stay away from caffeine, alcohol, MSG and processed foods.

A few weeks afte the accident, I started drinking turmeric tea, which relieves inflammation. We have also started using Flax oil. Somewhere in the recesses of my brain I realize what I need, but can't always locate it when I want. Thank you for reminding me of these.

For now rest as much as you can, but balance it with exercise. The rest will allow your brain to let itself heal and the exercise will give it more oxygen to do so.

Mark In Idaho has pointed out to many people here that the more symptom free days that you can string together, then the more likely it is that you're allowing your brain to heal itself. Symptoms can be a warning sign that you are pushing yourself too hard to do something.

Don't worry about your finances right now (although I know it's hard not to) just focus on the most important thing - letting your brain heal.

I was running 3-5 miles a day + yoga before hte accident. It is a struggle now to walk to the end of the driveway. I am trying to visit the goats (although I no longer go in with them -- they scare me right now) or the chickens on a daily basis.

So, the fact that I have yet to have a symptom free day means that I am overdoing it?

thank you!!!!

[Mark in Idaho]

There are a couple of things you can try.

First, get a white board for your refrigerator or where-ever you will notice it. have you wife and kids put notes on it. We have two. One is for notes for me. the other is for notes to my wife. If I make a note for her on a piece of paper, I will likely forget to give her the piece of paper. By knowing I have the white board, all notes to her go there. She does the same for me. For a while in January, i was struggling to remember what day it was. She would write it on my white board.

btw, Anybody else have this problem? if I spend a day thinking it is the wrong day, I end up out of sync for the rest of the week or until I have enough reminders to get my brain calendar right.

Research shows that PDA/smart phones can be very useful to people with cognitive/memory struggles. I use the three alarms on my cell phone to remind me of important times. If I have a 11:00 dentist appointment and it takes 15 minutes to get there, I start my alarm at 10:00. This is for me to have time to figure out what is on the white board, Then, I have a reminder at at 10:20 to prepare me to be ready to leave. If I am involved in a task, I know to stop and get started getting ready to leave. Then, at 10:35 or 10:40, the alarm sounds telling me to leave.

It works well for me because otherwise, I will have too much to do last minute before I can leave.

I also put things by the door so I have to step over them before going out. Harder to forget, but I still do sometimes. I get annoyed, Who put that in front of the door?

It helps if your family understands all of your symptoms and limitations. Not necessarily so they pick up the load but so they can direct/remind you without being frustrated.

If you struggle to read, try using paper to hide the text above and below the lines you are trying to read. Your eyes may get overloaded with too many letters and word.

the problem with the PCS brain is it loses its ability to filter out extraneous information. It hears all of the background sounds. It sees all of the background images.

I just call my wife "Sweetie" because it takes too much cognitive effort to pull up her name, Yvonne. her name has an abstract connection to her. Sweetie has a defining connection to her.

You may find that you can pull words out of the air by looking around and in your mind, naming things you see. It can cause your brain to sort through memory areas that have the word you are looking for. Another trick I use is a bit odd. If I can't find a word or name, I start to release the thought of trying to find the word. Just before I introduce a new thought, sort of during the pause between thoughts, I will often find the word I was looking for. It sounds weird but it works.

I have lots of other tricks and work-arounds. The most important skills is learning how to clear your mind of distractions so you can focus on the task at hand. I will stop everything and close my eyes to help me find a focus. At first, it may takes quite a bit of effort to Stop and Think but as you learn these skills, you will get better at clearing your mind so you can Stop and Think.

Tell us more. We're here to help.

My best to you.

[emme727]

Originally Posted by Mark in Idaho

There are a couple of things you can try.

First, get a white board for your refrigerator or where-ever you will notice it. have you wife and kids put notes on it. We have two. One is for notes for me. the other is for notes to my wife. If I make a note for her on a piece of paper, I will likely forget to give her the piece of paper. By knowing I have the white board, all notes to her go there. She does the same for me. For a while in January, i was struggling to remember what day it was. She would write it on my white board.

Excellent advice. We were in the midst of gutting/remodeling our kitchen when the accident happened. We have walls, wiring, and water now, so as we fix the kitchen we are trying to take my needs into account by creating what I need.

btw, Anybody else have this problem? if I spend a day thinking it is the wrong day, I end up out of sync for the rest of the week or until I have enough reminders to get my brain calendar right.

THis happens to me frequently. The children are between houses every other week. So our kid-free week is my re-boot time. It is also one of the days of the week (Monday is switch day) that I can start over and know what day it is. Thursdays are another day, as it is a farm delivery day (we make deliveries from our farm to area restaurants -- of course, I can't do that, but am aware which day it is). Outside of that, I get confused. The re-boot days help.

Research shows that PDA/smart phones can be very useful to people with cognitive/memory struggles. I use the three alarms on my cell phone to remind me of important times. If I have a 11:00 dentist appointment and it takes 15 minutes to get there, I start my alarm at 10:00. This is for me to have time to figure out what is on the white board, Then, I have a reminder at at 10:20 to prepare me to be ready to leave. If I am involved in a task, I know to stop and get started getting ready to leave. Then, at 10:35 or 10:40, the alarm sounds telling me to leave.

It works well for me because otherwise, I will have too much to do last minute before I can leave.

This is a great idea. I have 2 alarms to remind me when to meet the school bus at the end of the driveway for our youngest (half-day of school). I am not driving yet, so the other alarms don't apply yet. My wife builds my doc appts around her work and the farm schedules.

We have started to use a Cozi calendar /shopping list on our phones. They sync with each other. That way I can immediately add something we need or I can see what the day looks like. Unfortunately, I often forget to check. A daily routine may help?

I also put things by the door so I have to step over them before going out. Harder to forget, but I still do sometimes. I get annoyed, Who put that in front of the door?

Unfortunately, our house is still a construction zone. My wife has cleaned areas so that it is safer for me, but it is future good idea.

It helps if your family understands all of your symptoms and limitations. Not necessarily so they pick up the load but so they can direct/remind you without being frustrated.

Child #5 (5 y/o) told me that he wants to learn to read because I have a "cussion" and he can read to me. He also will explain to me each step of doing something, whether it is needed or not. The other children are pretty good about it -- reminding each other to be quiet or to help with tasks that I would usually do. I feel most sorry for my wife who is taking on her tasks and mine and has to deal with someone who can't remember if we discussed something once or ten times.

It is hard at times to remember that just because I am not wearing a cast or have visible injuries, doesn't mean that I am not injured.

If you struggle to read, try using paper to hide the text above and below the lines you are trying to read. Your eyes may get overloaded with too many letters and word.

breaking everything up on the page like this has helped tremendously! I will try to do that on the page.

the problem with the PCS brain is it loses its ability to filter out extraneous information. It hears all of the background sounds. It sees all of the background images.

I just call my wife "Sweetie" because it takes too much cognitive effort to pull up her name, Yvonne. her name has an abstract connection to her. Sweetie has a defining connection to her.

You may find that you can pull words out of the air by looking around and in your mind, naming things you see. It can cause your brain to sort through memory areas that have the word you are looking for. Another trick I use is a bit odd. If I can't find a word or name, I start to release the thought of trying to find the word. Just before I introduce a new thought, sort of during the pause between thoughts, I will often find the word I was looking for. It sounds weird but it works.

My best friend is deaf and I was fluent in ASL (until I moved away 5 years ago). I find that I can immediately sign a word, but not speak it. I also find that I the first letter of a word will come out, but then I'm stuck. I see the image of what I want in my brain (if it is an object), or feel the first letter (dddd) if it is a description, but struggle beyond that. I stutter quite a bit at times.

The other day the septic guy was here and asked if I had a toilet running. I was trying to tell him that I had the laundry going. I ended up pointing to the clothes line and tugging at my clothes and saying "clothes. clean. me." I was so frustrated that I even threw in a foot stomp somewhere in there. I had explained to him, before this conversation, that my brain was injured, so be patient. Of course in a tiny area (largest local town is 700), he already knew about the accident.

I have lots of other tricks and work-arounds. The most important skills is learning how to clear your mind of distractions so you can focus on the task at hand. I will stop everything and close my eyes to help me find a focus. At first, it may takes quite a bit of effort to Stop and Think but as you learn these skills, you will get better at clearing your mind so you can Stop and Think.

Stop and Think is easiest when it is just me or me and the computer or me and my wife. It is when anything new is thrown into the mix that I get frustrated and confused. I know that I will eventually have to leave the safety of my house, or respond to customers who come to the door....

A local woman had a tbi about 5 years ago and stopped by recently. I don't remember much about the conversation. But she did tell me that she would explain to people her situation, which helped a lot -- that way when she got confused, they were more understanding.

I try to daily record things that happen so that I can see progress/tell my doctor (i.e. septic guy).

Tell us more. We're here to help.

My best to you.

Again, this forum has been a lifesaver. I was soooooo upset and depressed about all of this. It has been hard to go from where I was to where I am. I am still trying to see it in a positive light, but it is quite frustrating.