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


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Old 09-12-2015, 12:30 PM #1
DannyT DannyT is offline
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Default Negative Energy

This forum is full of negative energy. It really needs an overhaul. I believe when people visit they are filled with anxiety and hopelessness.

Like today, I just checked in and I saw people reporting how their deficits are permanent. I am barely holding on and need to believe I will get better. I can't see these types of stories.

I know plenty of people in person who have gotten better. Where are these people?! Tell your stories! We need this more than anything!!!
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Old 09-12-2015, 01:02 PM #2
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You may be spending too much time reading too many threads. What posts mentioned permanent deficits ? I have not seen any lately.

I have stated many times. Brain injuries are permanent. But, improvements are attainable for all but a very few. Rehab experience shows that the best recoveries happen when the patient accepts their current state of injury and symptoms and uses that as a foundation to move forward. When we constantly look at things as "I can't do that." versus, "I'll do that activity a different way," we get stuck in negativity. Moving forward despite our struggles allows us to rebuild our lives and reinvent our lives.

I have lived with horrible PCS limitations but can't understand why so many dive for a dark cave every time they encounter a struggle. I've had to leave stores, restaurants, church functions, etc. Over time, I have learned how to moderate these events so I can attend most of them.

Our lives changed when we got injured. But, we still can live a full life.

What have you tried to do to reinvent your life so you can move forward with the struggles you have ?
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Old 09-12-2015, 01:48 PM #3
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Quote:
Originally Posted by DannyT View Post
This forum is full of negative energy. It really needs an overhaul. I believe when people visit they are filled with anxiety and hopelessness.

Like today, I just checked in and I saw people reporting how their deficits are permanent. I am barely holding on and need to believe I will get better. I can't see these types of stories.

I know plenty of people in person who have gotten better. Where are these people?! Tell your stories! We need this more than anything!!!
Danny,
It is human nature.
When folks are doing well they don't need to vent, seek support or communicate as often.
Just like your post, it is negative and complaining because you are upset about something and that is OK. Maybe start a post with a title called, " Please give me good news about TBI and PCS". That may get more posts with good news but in my experience on forums, folks move on with life when feeling better and don't post as often.

I wish you the best Danny....I know it is frustrating to hear bad news all the time.

Take care,
D.
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Old 09-12-2015, 02:16 PM #4
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I wasn't complaining at all but saying what I believe the majority of folks feel who visit.
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Old 09-12-2015, 02:39 PM #5
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Surely, one cannot "overhaul" a forum of real people in different phases of dealing with what has happened in their brain/mind/body after TBI/PCS??
Everyone here should feel safe to respectfully express themselves and find the support and information they need.
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Old 09-12-2015, 03:17 PM #6
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I agree the negativity on here gets to me too. I can't fault the people posting it (I've certainly posted my fair share!), I fault me extrapolating others' experience to my own. This is hard for me not to do, but I feel like I am getting a little better at not doing that.

Anyway, I'll try to add some positivity with a small success and example of a workaround I had today. I'm a grad student studying evolutionary biology, and before my accident I was doing loads and loads of cricket matings, mating a female of one species to a male of the same species and a male of a different species (I study a genus of Hawaiian crickets that forms new species very rapidly, so it's a good system to study how new species form). Anyway, all these experimental females had a bunch of offspring, which I collected and put in the freezer shortly after they hatched.

While this was happening I was super busy with a double teaching load, and there was really no way around just putting the crickets into the freezer in a somewhat disorganized way. Fast-forward to now, I have about 4,000 nymphs distributed in a barely organized way among about 50 boxes. I need to extract DNA from some portion these nymphs and then do paternity analysis on families of offspring, but to do that I need to know where everyone is.

I took pictures of all the labeled tubes where the crickets are frozen in all the boxes, and have been slowly going through the pictures, taking an inventory of which crickets are in which box. Doing this by myself took a toll, with a lot of computer screen time, and translating each label (made with my less than stellar handwriting) into a word document. I ended up enlisting the help of my parents, calling them to have them record me as I read off the labels. This way I didn't have to read and type, which was easier, and there were no errors in reading the labels. I still could only do a handful of boxes at a time, but over the course of a few weeks, I finally finished today.

Haha, probably too much information for everyone, but I'm glad to have this out of the way, and can now proceed much more easily with the rest of the experiment, and am one step closer to figuring out what's going on!
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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 09-12-2015, 03:49 PM #7
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A Windows computer has voice recognition to text. In Win 7, it is in Accessories, Ease of Access/voice recognition. You can speak the information, including comma, new line, tab, enter, etc.

There are a few "ease of use" features in most computer operating systems that are worth checking out.

Anybody who has struggles, just post them and somebody likely has a work-around for that struggle.
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Old 09-12-2015, 07:54 PM #8
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Danny,

As far as recoveries, notice how the people who posted two years ago don't post anymore--besides a rare few. Read some of their posts. The hope and healing sticky has some stories I believe.

I've been where you are recently--hanging on by a thread it seems. I'm 19 and two years out. 4 months ago I was depressed out of my mind. 2 months ago I had a week where I was as close to suicide as ever.

But the past month has been a complete turnaround. Please read and take the posts--mine inclluded--seriously. I've been depressed with most setbacks I've had, but I feel like i'm done thinking like that.

It starts with a shift in mindset--basically what Mark said. This doesnt mean unrealistic pie in the sky thinking.

You have to want to live. Find the reasons. Find the reasons why you don't want to live and if you can control any of them, change it, but realize lots is out of your control. Accept it. But you DON'T have to let it control every aspect of your life. Will it influence most aspects? Probably, but you still have control over lots of things.

My friend has PCS bad. He has constant migraines and fibramayalgia. His head is at a constant 9--i bet most people would say a 10--and his back and neck are like rocks from the constant spasming. He has nerve pains firing up and down his back constantly. He can only sleep an hour or two at night. He has bad anxiety. But he has a beautiful attitude.

He cracks jokes all the time. He tells me this gets him through the day ," embrace the pain. Don't be it's B*!*@. and that God has a plan for him."

Frankly, I let PCS rule me for probably a good 7 or 8 months out of this past two years. No one is going to tell you it's not traumatic, but if you don't get yourself out of the hole, you're going to continue experiencing trauma.

My healing process hasn't been the greatest, but I have read other posts--SpaceCadet for example--where the healing didn't really happen until 2 or 2.5 years after the injuries.

I find it hard if I only have a reason or two to keep going, but that's what I needed just to start. The whole mindset is what one wants. Here are a few examples of the type of thinking that one needs to do more than survive.

When you get a negative thought, stop it ASAP. Don't ruminate about sad things as much as you can. Take a breath and enjoy the peace of breathing.

I can't do this or that any more, but I can do these things...

I have learned this because of PCS...MEditation? Healthy eating? patience? Empathy? Trust?

Make jokes: The most pleasurable thing I did today was fart...
Seriously go out of your way to make jokes. Helps so much. Or read/ watch funny stuff.

This bath or shower feels fricken great right now. This dark chocolate is delectable. The wind on my skin feels...

Bud told me he struggled (hope this is okay, Bud) mentally early on, but each day he woke up and figured there was a reason he was still around.

Hockey had an old post where she said when she's having tough days she tells herself, "i can get through today because I got through all my yesterdays."

Faith has helped me. I don't know if you are religious, but a few prayers a day help my anxiety of the future and keep me at peace.

It doesn't all have to come back to PCS ruling your life. It could be worse. You could have a worse condition. It can and will get better.

Please just don't give up, and make the effort to change, even if you feel stupid or know you're just telling yourself BS at first.

Honestly, I'm proud of you and everyone with PCS. It's traumatic. It's hard as hell. You are a lot stronger than you think and I know you just want a break, but you gotta overlook that.
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Old 09-12-2015, 08:05 PM #9
DannyT DannyT is offline
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First of all, I didn't mean to lash out earlier. I was in a bad place and it was inappopriate. I ensure you that my intentions are always good.

JBuck,

Thanks for your thoughtful reply. I agree with what you said but beyond PCS, I have had a fairly rough life. My mom died when I was 19 a few months after my best friend who was only 18. My other friend died in 2012.

The latest thing was as I was experiencing a setback. (I was doing so much better and then stress got the better of me and my brain) My dear older brother of only four years older than me passed away unexpectedly. So I just had to deal with that - the funeral was on 9/6 a day before my 27th birthday. You can read my post about that. Anyway, PCS might not be the worst thing in my life but it is another loss. The loss of my former self. Someone I admired for getting through all the past struggles. I think this is why it has been so hard. I can't get myself to rest because bad things do keep happening in my life.

I'm fighting with all my might and really appreciate the constructive and thoughtful posts.
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Old 09-12-2015, 08:19 PM #10
JBuckl JBuckl is offline
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I'm sorry you've had to go through all of that. Sounds like a lot. But Here's one of my fave quotes:

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.”
― Kahlil Gibran
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