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


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Old 05-19-2015, 06:33 PM #1
RJam RJam is offline
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Default Am I allowed to be mad over this event?

Alright gonna keep this story short and sweet.

I attended a class in Jan. Cost over 1000. Was given a grant by the government for 2000 Woohoo! I sent in the forms. Messed them up. I continued to mess up the forms or send things incorrectly or they got lost in the mail 6 times. I finally sent them in correctly! But alas its too late and I can't claim the grant. So now i'm stuck paying the bill which I was not prepared for since I was planning on using the grant.

I mentioned to many people that I was struggling and couldn't get it correct. I even mentioned that I had to do it soon or else I wouldn't get the money. I had one person offer my help but the help was only available after the deadline so not much use. I am very angry no one has been helping me do little things like this. It has been an endless frustration. I had family mocking people who can't do the clock test (draw a clock with hands at 10 to 11). I have failed that test multiple times. Even messing up one clock after another. I am seriously considering cutting off all ties with everyone around me.

It has been 30 months of the same ****. I even got all these one page pieces of information from my brain injury worker. Each page is dedicated to a different symptom. Page for Anger, page for being impulsive and how the care giver can help and understand how I feel. Not a single page has been read. Why should I bother putting effort into family or friendships if none can be bothered to help me out when, at least in my opinion, I need it most. I feel like the problem stems from everyone thinking I am far more capable than I really am. I am largely seen as normal even though the life I lead is not the one I would choose
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Old 05-19-2015, 07:10 PM #2
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Jomar Jomar is offline
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If it was a government grant , perhaps you can contact someone in that department and ask for help and an extension. Check your state or federal websites for how to request help with this.

I'm sorry your family & friends have let you down...

Or if you have a dr providing treatment ask them for help or referrals of help for paperwork & forms like these..
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Old 05-19-2015, 07:13 PM #3
Mark in Idaho Mark in Idaho is offline
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Mark in Idaho Mark in Idaho is offline
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I understand your frustration. I have some similar difficulties. It took me a few years before my wife finally understood enough to start to help. By then, I had missed my chance at a Work Comp claim.

The thing that changed her understanding was when she finally read my NeuroPsych Assessment report. I think she may have also read some of the TBI Survival Guide at www.tbiguide.com.

It is not possible to make others understand. It helps if we learn how to communicate our struggles. Rather than a blanket, "I have a brain injury." comment, we need to explain how the injury is effecting us. For me, one problem was I would get lost trying to fill out forms. Paper forms were the worst thus the WC claim failure. If the form was online or on the computer and I needed to access other information on the computer, I needed two separate screens. I could not switch between one Word doc and another Word doc beneath it. I needed them to both be open on separate displays.

Part of the issue was learning how to understand my own issues and accept them as real so that I did not try to push through and fail. Being willing to be humble with others and ask for help in ways that they accept is important. Rather than, I need help with this form, I would say something like "I need to finish filling out this form but every time I look at it, I fill in a few lines then I get lost. Can you help me by reading the form so I can tell you the information for the specific field on the form." This is a big problem I have.

I learned that if I had to fill out a form by myself, I would put a blank sheet of paper over the part I had already filled out and a second piece over the bottom part to be filled out so I only saw the line I was working on. This made up for the lack of filtering by my brain.

I don't want to sound like I am dumping on you but only you can administrate these issues. It is possible to learn how to do it. Many of us have been through this. Getting mad at others will not help you or them.

btw, I don't recall the specifics of your situation, your age, living situation ( independent or with others/parents, spouse etc.) job, etc. so I may be missing with some of my points. If I have, please correct me so I can be better help.

Have you had a comprehensive NeuroPsych Assessment ?

I understand how nobody read the forms about anger, impulsiveness and such. It is difficult to get others to read boiler plate form/information. If it was more specific to your diagnosed condition, others may be more willing to read them. Otherwise, it is like handing them a text book and saying, please read pages x y and z. Can your brain injury worker meet with your family ? That might help. It helped in my situation when my wife attended a brain injury support group with me. She had a chance to hear other family and caregivers talk about these same issues.

So, please do not get upset with them or yourself. The past is past. Try to move forward.

btw, Is there a government office, legislator or such who can appeal your loss of the grant. Maybe an Office of Disability Assistance of some kind. We have Disability Advocates here in Idaho that help with some of these issues.

My best to you.
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Old 05-19-2015, 07:42 PM #4
Laupala Laupala is offline
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I too have found myself disappointed with many friends. They'll say things like, "Is it really that bad?" or "You're still dealing with that concussion?". I'll have friends ask how I'm doing, and I give a fairly lengthy explanation of how things really aren't getting much better, this is really difficult, I find myself down and depressed often, etc. and all I get back is an "I'm sorry to hear that". Some offer to call but never do. Some friends have been really great, and so I guess this is how you learn who your true friends are. When we eventually get out of this mess we'll be much more equipped to help friends in need.
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26 year-old PhD student in evolutionary biology, slipped on ice in Feb 2014 while clipping my fingernails and walking to save time (dumbest reason for PCS ever?). Initially just had headaches and didn't feel quite right, but a minor head bump 5 days later started a downward spiral of anxiety, depression, insomnia and fatigue. Had trouble concentrating on reading/looking at screens

April 2014 - did exertion test, passed, started exercising and doing more, but didn't feel much better.

May 2014 - Went on backpacking trip OK'd by doctor, trip itself went fine, but felt worse a few days after getting back, more difficulty concentrating, worse headaches.

June 2014 - Bumped head on ceiling walking slowly down stairs, no immediate symptoms, but caused worsening headahces, more difficulty concentrating and looking at screens. Have not felt as good as I did before this since this bump.

December 2014 - after feeling relatively better I went xc skiing and fell but didn't hit my head (something my psychologist who specializes in brain injuries told me he hoped would happen so I saw it was OK), felt worse

Feb 2015 - back in grad school, light teaching load and some research, nowhere close to operating at my full capacity. Still have constant headaches, difficulty reading/looking at screens, mild anxiety and depression, and just not feeling like my normal sharp self.

Trying, but struggling, to believe that I'll get back to my old self, or at least get close.
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Old 05-19-2015, 07:51 PM #5
RJam RJam is offline
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Quote:
Originally Posted by Laupala View Post
I too have found myself disappointed with many friends. They'll say things like, "Is it really that bad?" or "You're still dealing with that concussion?". I'll have friends ask how I'm doing, and I give a fairly lengthy explanation of how things really aren't getting much better, this is really difficult, I find myself down and depressed often, etc. and all I get back is an "I'm sorry to hear that". Some offer to call but never do. Some friends have been really great, and so I guess this is how you learn who your true friends are. When we eventually get out of this mess we'll be much more equipped to help friends in need.
I get that a lot too! I just expected so much better. I've always tried to go above and beyond for friends when they needed it. And here I am missing out on more money or paying more fees for missed deadlines or late fees etc. It may be small but it really adds up. Now that i'm starting to look for work again (full time) I am seriously considering disappearing
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Old 05-20-2015, 12:31 AM #6
Mark in Idaho Mark in Idaho is offline
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Just for some perspective, since I was not able to get a Work Comp claim settlement, now, my total monthly income is what I used to make in a single day. The WC claim would have hopefully provided double what I am receiving from SSDI.

So, be glad you can work and hold down a job.

A try to go light on your friends. It is tough enough to get family to help out with our struggles. Friends have their own lives to live. Helping them move or helping them when they are sick or laid up with a non-head injury is entirely different than the help we need.
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