Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).


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Old 07-04-2012, 08:55 PM #1
kayley kayley is offline
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Confused How to Get others to understand..

Hello everyone,

I know this has been done a couple times now. However, I find it more and more difficult to get my parents to understand what it's like. Hell, sometimes I don't even know how exactly I feel. I've tried explaining situations that make my head hurt or when they talk too fast, I've tried explaining how stressful it is for me.

Right now I'm on highschool summer break. Currently I work 3 hours a week at a loud grocery store. I'm doing an English course to catch up for the course I had to drop last year. It's one hell of a toll on me. School ended last wed, started this course thursday. 5 lessons to complete every two weeks. Minimum probably 3 hrs a day or more on lessons and I'm exhausted. Lately I've been getting complaints that I didnt think to do the dishes or that I don't do anything all day.

How can I explain it? I've given my parents the tbi guide (father didnt read it, mom read a few pages and never looked at it again), I've tried explaining the fatigue, but they do not seem to believe me because they are "more tired because they worked all day."

Anyways, long story short, Is there a good way to explain that I'm doing more than enough as it is? Or a way to get them to understand the fatigue I feel every day?

Thanks Everyone!
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Old 07-04-2012, 09:21 PM #2
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Kayley, maybe show them this article (I see you're in Ontario):

http://www.theglobeandmail.com/life/...rticle4363998/

“We want people to rest cognitively and physically after a concussion,” added Dr. Tator, founder of ThinkFirst Canada. “We feel you get the best recovery if you follow a graduated program, after a concussion.”
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Old 07-04-2012, 09:29 PM #3
xanadu00 xanadu00 is offline
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Hi Kayley,

This sounds like a difficult situation and I am very sorry you have to deal with it. Given what you've said here, it sounds to me like your folks are not interested in understanding your situation right now. If you've given them the TBI survival guide and they're not even willing to look at it or take it seriously, that suggests to me that there isn't much you can say to change that. It's not that you haven't explained things the right way; it's that they have decided that they aren't going to listen to you.

Perhaps they would take your situation more seriously if they heard from a professional. Do you know if any of your doctors would be willing to explain the situation to your folks? Do you have any upcoming appointments that your folks could sit in on?

I'm sorry I can't think of anything better to offer. Like I said, it sounds to me like a tough situation.
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Old 07-04-2012, 09:31 PM #4
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As far as the fatigue goes, one thing I suggested on another post is to ask people what they feel like when they have the flu. Ask your folks how much energy they have when they're very sick, and tell them that's pretty much what you feel like all the time. It's worth a shot.
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Old 07-04-2012, 09:46 PM #5
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Quote:
Originally Posted by xanadu00 View Post
Hi Kayley,

This sounds like a difficult situation and I am very sorry you have to deal with it. Given what you've said here, it sounds to me like your folks are not interested in understanding your situation right now. If you've given them the TBI survival guide and they're not even willing to look at it or take it seriously, that suggests to me that there isn't much you can say to change that. It's not that you haven't explained things the right way; it's that they have decided that they aren't going to listen to you.

Perhaps they would take your situation more seriously if they heard from a professional. Do you know if any of your doctors would be willing to explain the situation to your folks? Do you have any upcoming appointments that your folks could sit in on?

I'm sorry I can't think of anything better to offer. Like I said, it sounds to me like a tough situation.
Yes, my mother has been to 4 or 5 neurologist appointments. My father has been to one. Part of it is that my father wouldn't get paid for time taken off, but my mother can take a holiday. That flu suggestion is good, I will try it! Thanks!
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Old 07-05-2012, 01:26 PM #6
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"Lost & Found: What brain injury survivors want you to know."

Here's an excellent 1-page article for you and your family.
I'd recommend: print and tape it to the refrigerator.
This weblink has been posted by others several times. Check those posts related to that thread.
I wish you well and good luck.

http://m.brainline.org/#content/content.php?id=5498
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50s Babyboomer; 2008 high-impact rear-ended/totalled-MVC, closed-head injury->pcs ... "Still dealing with it."
1993, Fell on black ice; first closed-head injury; life-altering. // 2014 Now dealing with Peripheral Neuropathy, tremors, shakiness, vestibular disorder, akithesia, anhedonia, yada yada, likely thanks to rx meds // 2014: uprooted to the cold wet gray NW coast, trying to find a way back home ... where it's blue sky and warm!
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__________________________________________________ _________
Each and every day I am better and better. I affirm and give thanks that it is so. // 2014-This was still true for me last year, I truly felt this a year ago. Unfortunately it holds no meaning for me now. Odd, it was the Theta mantra for years. Change change change.

Last edited by Theta Z; 07-05-2012 at 05:29 PM.
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Old 07-05-2012, 03:57 PM #7
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And here's another good one! "Spend a Day on Planet TBI"
http://www.mindyourheadcoop.org/blog/?p=1075
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Old 07-05-2012, 05:23 PM #8
SmilinEyesMs305 SmilinEyesMs305 is offline
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So sorry you are going through this at that age. I see many others your age at my various therapies and wish their parents understood better how incredibily hard daily living is with a brain injury.

I'm slightly older than you, (was in the middle of grad school/working full time, seriously relationship, time for big girl decisions about houses and cars and such), and then my world fell apart after a car accident.

I have tried throughout my recovery to get old collegues, my boyfriend (who really tries so hard to get it), my parents, my teenage brother, etc. This article, although related to lupus, helped my family finally get it! I hope it helps you.

Even though the woman has lupus, I feel like the cognitive and physical fatigue we battle daily is very similar. The point she makes in the article is applicable to us as well.

http://www.butyoudontlooksick.com/ar...e-miserandino/

my best to you and your recovery
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What Happened: On 3/8/11 I was stopped waiting to merge into traffic when I was rear ended by someone doing 45 mph. I walked away from the accident, to fall into the pit of PCS 5 days later... (I have had 2 previous concussions, but neither developed into PCS.)

Symptoms 3 Years Post: Physical: migraines, infrequent vertigo, neck and back pain (from accident), tinnitus, visual field deficits in left eye, problematic light sensitivity, (including visual seizure activity), noise sensitivity, EXTREME fatigue, semi-frequent disrupted sleep cycles,
Cognitive: semi-frequent Brain fog after cognitive strain, limited bouts of impulsivity, unable to concentrate for more than short periods of time without fatigue, word finding problems, slowed processing speeds, impaired visual memory;
Emotional: easily overstimulated, depression, anxiety;

Treatment so far: Vestibular therapy; Physical Therapy; Vision Therapy; Vitamin Schedule; Limited caffeine; Medications; attempting to limit stress and overstimulation; Yoga; Cognitive Therapy
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Old 07-06-2012, 10:40 AM #9
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Default Make others understand

It's so frustrating to get others to understand what I'm going through. My husband and teenage some make fun of me for not remembering things. My friends from work laugh at me for the mistakes I make.

The other morning my 8 year old daughter wanted breakfast. I walked into the kitchen stood there in a trance for a few minutes not knowing what to do next and then I brought her a dog bone. My friend laughed and said, "Did she like it?" I lost my mind and became very angry with her. She quickly apologized.

I'm constantly doing stuff like that on a daily basis and no one understands.

Kelly
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