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


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Old 06-22-2014, 04:48 PM #1
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Default It's one of those days that my soul agonizes...

Summer is taking off with lots of activities and my family is about and out doing and I'm limited or done completely. Stuck at home.

I was so very involved in everything and knowing everyone. Now when people see me the look of pity falls over them or the awe face. I hate it. I just want me back and I know I need to stop doing that but there is no magical way to stop no matter how hard I try to accept the new normal.

It's one of those days and they are less and less but they still happen and I still feel my soul being squeezed til it hurts so badly. If will healed us I'd be better than I was even before the accident.

My daughter needs me healed. She struggles with this. My attitude is positive and go getter around her but the differences in me and changes in our life are still hard for her. She goes to a neuropsychologist but this is a long road.

She carries worries in her now and her peace is unsettled. She has fear that was not there before.

We can't fix this for her. We are closer than ever and a team. But it's all painful to see.

I hope I can look back someday and say that her and I are much healthier in everyway and that she has gained her strength, confidence, and peace back.

Just one of those days and I can't wait til it's over

Jace
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.


*TBI with mild to severe damage November 2012 from car crash. Stroke with hemorage & 4 clots in veins in brain Feb/Mar 2015.

*Vestibular damage, PCS, hypercusis, severe visual processing and tracking issues, short term memory loss, headaches/migraines, occipital neuralgia, cognitive issues, neurological issues, brain fog, brain fatigue when over stimulated, twitching, vertigo, neck issues, nerve issues, PTSD, personality change, Since stroke left side weakness, rage, worsening of vestibular problems, recall, speech, memory.

*Can't drive or work. Have done occupational therapy, cognitive therapy, physical therapy. Learning work arounds, and strategies to be competent in daily life. Change your attitude/perspective changes your life. As TBI survivors this is a vital part of our healing and living.

*Working on getting to know and accept the new me.
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Old 06-22-2014, 05:02 PM #2
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I was thinking that myself this weekend too. Friends all having cookouts and pool parties. Im stuck at home in a dark room.

I do get out, I do, but these weekend has been bright and hot, so its a no go.
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Old 06-22-2014, 06:13 PM #3
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Hi Jace,

I know you've been at this thing for some time (1.5 yrs.?), but I was "pushed" into having lunch every Tuesday with my mother-in-law ( now passed away) and 3 other women who spent time with her to get her out of the house. It was about 6 months after the injury, and I was in no shape to be out amongst others, or so I thought.

Even though it was really tough at first, esp. with my m-i-l's Alzheimer's and the many times her incoherent conversation would freeze me up completely, I eventually found "shelter" in those 3 women, who have still been by my side and my best "protectors" other than my family if I am in social situations with them. I gave them a chance to understand and help me through this.

I would encourage you to try 1 or 2 good friends to chat with or go over to their/your house with even twice a month, if you can. It will be hard at first, but it does get easier when you are with people who begin to understand your difficulties, but still keep you socializing and feeling like you have something to look forward to. And nothing replaces real face-to-face social interaction.

It's amazing what difference something that small can do to change your outlook. I was at a very low point in my life when these women took me under their wings, and I have since always referred to them as "my lifeline." I was fading into social obscurity and feeling like I would never be able to contribute anything anymore, as I was working full-time in the medical field and playing in 2 bands.

Their friendship and their patience got me back to feeling like I mattered again, and that I could still contribute my opinions, my insight ,even though it was even more difficult then. As the commercial says; "priceless".

As you gain confidence, your other relationships (i.e. family/dtr.) will benefit, too. You are obviously still well-spoken and insightful. Just need to see yourself through other's eyes to gain back some of what you miss. We will help you as we can on this site, as you know.

Take care, Jace. M-i-m
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Old 06-22-2014, 06:55 PM #4
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M-i-M,

I'm so happy you have this group. I have two close girlfriends that haven't faltered, and a few older friends that haven't either. One emails me everyday.

Tomorrow one of my older friends is taking me to meet an older lady that lives on the lake front. She loves company. She sit in her shaded yard at the water front and loves visits. My daughter can kayak as I visit this summer.

I also joined a support group that meets once a month. My second meeting is this week and I am really looking forward to it. I'm going to take private dog obedience classes and canine good citizenship classes with one of my dogs so we can join the dog therapy group and do visits for one hour a week.

Even with these things it's not the same. 19 months and I'm trying desperately not to wish to be able to do what I could before but I don't know how to do that. All those same things are still happening around me and I can't participate.

I know there are many of you that hit these spots too and tomorrow will be a different day. Just 'there' today.
__________________

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*TBI with mild to severe damage November 2012 from car crash. Stroke with hemorage & 4 clots in veins in brain Feb/Mar 2015.

*Vestibular damage, PCS, hypercusis, severe visual processing and tracking issues, short term memory loss, headaches/migraines, occipital neuralgia, cognitive issues, neurological issues, brain fog, brain fatigue when over stimulated, twitching, vertigo, neck issues, nerve issues, PTSD, personality change, Since stroke left side weakness, rage, worsening of vestibular problems, recall, speech, memory.

*Can't drive or work. Have done occupational therapy, cognitive therapy, physical therapy. Learning work arounds, and strategies to be competent in daily life. Change your attitude/perspective changes your life. As TBI survivors this is a vital part of our healing and living.

*Working on getting to know and accept the new me.
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Old 06-23-2014, 12:37 AM #5
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You expressed yourself so well, Living Dazed. Exactly how it feels to me so often. Such a quiet weekend...no drinks in the yard, BBQs, pool parties to go to (or get invited to), etc. out of the social loop and I guess people assume I can't go and don't call anymore. I feel sorry for my spouse who has also become lonely in this journey.

Hugs to all!
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What happened: Legs pulled forward by a parent's hockey stick while resting at the side of the rink at a family skate....sent me straight back. I hit the back of my head (with helmet) on the ice, bounced a few times, unconscious for a few minutes. September 11, 2011. Off work since then…I work part-time at home when I can. It has been hell but slowly feeling better (when I am alone☺).

Current symptoms: Vision problems (but 20/20 in each eye alone!) – convergence insufficiency – horizontal and vertical (heterophoria), problems with tracking and saccades, peripheral vision problems, eyes see different colour tints; tinnitus 24/7 both ears; hyperacusis (noise filter gone!), labyrinthian (inner ear) concussion, vestibular dysfunction (dizzy, bedspins, need to look down when walking); partial loss of sense of smell; electric shocks through head when doing too much; headaches; emotional lability; memory blanks; difficulty concentrating. I still can’t go into busy, noisy places. Fatigue. Executive functioning was affected – multi-tasking, planning, motivation. Slight aphasia. Shooting pain up neck and limited mobility at neck. Otherwise lucky!

Current treatments: Vestibular therapy, Vision therapy, amantadine (100 mg a day), acupuncture and physiotherapy for neck, slow return to exercise, magnesium, resveratrol, omega 3 fish oils, vitamins D, B and multi. Optimism and perserverance.
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Old 06-23-2014, 10:57 AM #6
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Thank you for this post. I am only 3 weeks post-accident but this was the first weekend that really got to me. It all hit me like a ton of bricks. I'm tired of being shut up in the house and I'm realizing this will be a long journey, which is terrifying. Just knowing I'm not alone helps.
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Old 06-23-2014, 01:02 PM #7
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lolo82,

I'm so sorry you are a part of this club but happy you've joined the forum! You are so early in I am sending good vibes that you heal quickly!!!

Not every day feels like this but it does happen and everyone here understands. Please continue to eread the new and previous posts and the stickies as your brain will tolerate.

Doing this really helped me cope in the beginning. Plus post when you need to. Someone (s) will reach out to you and help if they can.

Today is better than yesterday, not celebration worthy but I'll take it!

Peace and wellness,

Jace
__________________

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*TBI with mild to severe damage November 2012 from car crash. Stroke with hemorage & 4 clots in veins in brain Feb/Mar 2015.

*Vestibular damage, PCS, hypercusis, severe visual processing and tracking issues, short term memory loss, headaches/migraines, occipital neuralgia, cognitive issues, neurological issues, brain fog, brain fatigue when over stimulated, twitching, vertigo, neck issues, nerve issues, PTSD, personality change, Since stroke left side weakness, rage, worsening of vestibular problems, recall, speech, memory.

*Can't drive or work. Have done occupational therapy, cognitive therapy, physical therapy. Learning work arounds, and strategies to be competent in daily life. Change your attitude/perspective changes your life. As TBI survivors this is a vital part of our healing and living.

*Working on getting to know and accept the new me.
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Old 06-23-2014, 05:57 PM #8
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I'm sorry. I get. I really really do.

My husband left this morning with the kids and some other relatives for a few days away at a resort. I acted really happy for them. It's a tradition and we always have so much fun. I had to strongly encourage my husband to do it because I knew he felt it should be skipped this year. I don't want their lives to stop just because mine kind of has though.

So, while I'm excited for them, I also feel like I'm getting left behind in life, in general. I've been having a little pity party for myself again today. 2 times in a week! I better get control of myself.
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Old 06-23-2014, 07:20 PM #9
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Hi Superstition,

I wish you the best during this time away from your family. I think you are incredibly selfless and brave to have put them first.

Like Jace, I hope you both can get past these rough patches soon.

Please take care, M-i-m
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Old 06-23-2014, 11:57 PM #10
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Thanks mim! You're sweet.
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