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


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Old 04-05-2015, 11:24 PM #1
lemonbar lemonbar is offline
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Default Creating new friendships/support circle

Hi,
I am over a year in with PCS and currently in outpatient rehabilitation. My psychologist is concerned about the lack of positive, supportive people in my life and I do agree with him as I currently have a troubled marriage and my parents can be negative and reactive to things although they are nice people. There's also just a lot of avoidance and not talking about the issues even when I try to engage them.

My question is, how do I go about finding friends? I am introverted and now I can't even drive myself anywhere and am easily overwhelmed. I have gone to a support group but it was too much oriented on recovered people and felt a lot like "I was supposed to die but now look at me" and really no one expected me to be hurt a lot so I can't relate and I never had a voice.

I have some old friends but have lost touch with all but one and honestly she has a ton of closer friends than she is to me. And I never see her. Then there's the more casual acquaintance type people I know. But I'm socially awkward. And even more now after the TBI and I can't shake all of this flat mood stuff. Plus I'm dizzy and have a headache and am tired and can't be anywhere crowded and get really confused easily and can talk funny.

So if anyone has suggestions on where or how an adult (33 yo) can meet new friends and find a new support circle please share. Personal experiences very much welcome. I need some help on what I want to be a positive new path for my life.

Thank you
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Old 04-06-2015, 12:08 AM #2
Mark in Idaho Mark in Idaho is offline
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Have you tried finding volunteer opportunities ? Working at a food bank or soup kitchen ? Often, we find the best supporting relationships as we try to lift up others.
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Old 04-06-2015, 07:15 AM #3
AndromedaJulie AndromedaJulie is offline
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A lot of volunteer opportunities do take place in crowded locations, but sometimes volunteers 'keep company' by visiting with elderly or sick patients who may not be able to get out or who are in a long term care facility. You could look into something like that.

I know this is not creating friendships in the same way you might be thinking, but I have found myself preferring to spend time with elderly people now. They are much slower and quieter. They don't object to space between sentences. They have a sense of humor about forgetting. And they're awesome. No, they're not in the same stage of life as me, but in many ways, we're in the same spot. I reach out to one of the ladies from my church that helped me with driving, and sometimes we will go for a walk together. I love it.

Julie
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About me: Married 45yo mother of two girls. In July 2014, I hit my head on the side of the pool; since then I've had 3 lesser concussions, one of which was due to MVA.

For the 5-10 years prior to that I’ve had what I now realize were possibly 20+ undiagnosed concussions or sub-concussions. Likely most of these result from Duane's Syndrome, for which I now have prism glasses. Have successfully done vestibular therapy and plan to start vision therapy.

Current companions: Significant depression, anxiety, hyperacusis, difficulty with verbal expression (recall & word mixups), mild spacial/vestibular issues. Feelings of disconnect in relationships.
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Old 04-06-2015, 11:05 AM #4
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Heart From One Introvert to Another…

Hi Lemonbar,

Do you like animals? If so, you might want to consider getting a dog. You can meet the most unexpected people walking your dog in the park, or just around your neighborhood. And dogs have so much to teach us!

You could even have your psychologist write you a script for an emotional support animal (ESA) or service dog (which would require some training, of course), so that you could bring the pup with you virtually everywhere you go. NT has a service dog forum which has loads of info on it about this topic.

The other thought I had for you, if you like kids, is to sign up for a reading to children program in your community. There is such a need to promote literacy and just a plain old-fashioned love of books in our young ones.

I have trouble making friends, too. There seems to be something unapproachable about me that I've never been able to figure out. But I'm working on it! There is nothing "wrong" with being an introvert, Lemonbar (I looove lemon bars!!!); it's just the way we're wired. We draw our energy from solitude, whereas extroverts gather theirs from being around other people. It's a continuum; I'll wager you've got a bit of extrovert in you, too.

Don't give up on face-to-face support groups just yet. You might find a better fit with a women's group, for example, or a depression group. I found one at a teaching hospital for chronic pain patients which is run by a pain psychologist that is a good group.

Maybe reach out to that girlfriend and tell her honestly what's up with you, bare your soul a little bit and ask her straight out for her support. She may surprise you. The two of you could maybe agree to have lunch once or twice a month, or do something fun together. Take your mind off things, just for an afternoon. Could really lift your spirits, and hers, too because it feels good to help someone you care about (no matter how many other girlfriend-girlfriends she may have!).

I know it's hard to ask for help, but it's important that we do so sometimes. Otherwise, we can get stuck. Human beings are social animals, after all, and we do need each other! Hope you'll stay close and let us know how you're doing.

Take good care,

Alison
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Old 04-06-2015, 01:49 PM #5
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Quote:
Originally Posted by lemonbar View Post

So if anyone has suggestions on where or how an adult (33 yo) can meet new friends and find a new support circle please share. Personal experiences very much welcome. I need some help on what I want to be a positive new path for my life.

Thank you
Regarding support groups, the Brain Injury Association of America lists support groups by state, there may be one on your area.

http://www.biausa.org/state-affiliates.htm

Best to you.
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What Happened: On November 29, 2010, I was walking across the street and was hit by a light rail commuter train. Result was a severe traumatic brain injury and multiple fractures (skull, pelvis, ribs). Total hospital stay was two months, one in ICU followed by an additional month in neuro-rehab. Upon hospital discharge, neurological testing revealed deficits in short term memory, executive functioning, and spatial recognition.

Today: Neuropsychological examination five months post-accident indicated a return to normal cognitive functioning, and I returned to work approximately 6 months after the accident. I am grateful to be alive and am looking forward to enjoying the rest of my life.
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Old 04-06-2015, 05:15 PM #6
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Thank you to everyone for the helpful responses. I have my hands full with rehab and some inability just taking care of myself (can barely do the house), so the volunteer option is something I'm considering for a future point in my recovery. I will need to look into some other support groups - I know there were nice people there and I did feel somewhat more at home than in general public.

I do have a dog already (and cats) but the behavioral issues and leash pulling creates stress and adds to my neck pain and nerve issues. I have trouble not being angry with her since the injury sadly.

I have spent time with my grandma and agree about understanding the elderly now and I would spend more time with them if I could get to them and find a connection. I just don't know how or where. Hard when I don't drive.

I have tried to get a visit with my friend but she is busy and then I get no response or that part gets ignored. The whole needing to be dropped off/picked up makes things too formal or awkward I worry. I guess I need to ask again.

It does just get lonely and isolated when you can't go as you please and also when you don't feel well and have few to talk to. Rehab has been good for me to get out.

Thank you for being an outlet. I have been reading for a long time. Seeing that others have similar struggles is helpful.
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Old 04-06-2015, 08:05 PM #7
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It sounds like your injury was quite severe. Do you feel up to sharing more about your injury and rehab experience ? One of the struggles with isolation is feeling that nobody appears to understand what you have been through and are going through. Many here have been through a lot.
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Old 04-06-2015, 10:55 PM #8
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I was in a MVA with whiplash and concussion. There was a brief loss of consciousness. Doctors were not much help and I just got told to rest for the better part of a year. It took over 3 months for a brain MRI and it was clear but I still wonder if it would have been if taken sooner.

I had some vestibular therapy but it didn't help much. I also had a run of PT that improved some things. After a neuropsychological exam I am finally getting the help I need at a rehabilitation center with physical, occupational, speech, and psychological therapy. I will soon see a psychiatrist and vocational rehabilitation is available later. Oh and I see a neuro opthamologist and physiatrist through them also.

My struggles are with near constant dizziness, constant headache, convergence insufficiency, anxiety, depression, aphasia, neck pain, arm weakness, nerve pain, ear fullness, loss of smell/taste, easily overwhelmed, vestibular issues, mood swings, sleep problems, light sensitive, cognitive stuff, memory
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Old 04-07-2015, 12:43 AM #9
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Lemonbar,

Wow, You fit right in here. Lost of people have had similar experiences. Your symptom list is classic, right out of the book.

Regarding the MRI, I highly doubt an earlier MRI would have shown anything. Actually, CT Scans usually do better. But, even rare but small bleed would not have likely changed your treatment or lack thereof. They would have just watched you a bit closer.

In my observation, your neck is likely your most treatable injury. Resolving neck issues, especially the subtle neck injuries common to injuries like yours allow the other symptoms to be more accurately treated. The huge overlap between neck related symptoms and concussion symptoms can confound treatment. Finding the right therapist who can help with your neck is important. It is amazing how one therapist can differ from the next.

It is important to learn good neck posture, especially during sleep and resting, when neck muscles are relaxed. It took me a long time to achieve healing for my upper neck. The therapists alone were not enough. To this day I have a noisy neck but don't get the disabling inflammation any more from having an unstable neck.

If your head aches have a neck component like many do, resolving that will help lower your daily stress load so the other therapies can be more productive.

Has anybody helped you with nutrition to provide a better healing environment for your brain ? There is a Vitamins sticky at the top that has good information.

Feel free to let us know how we can help.

My best to you.
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Old 04-07-2015, 06:09 AM #10
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Mark, could you explain the "huge overlap between neck related symptoms and concussion symptoms"? I hear that a lot on here and am wondering about the extent of it. I just thought it was my headaches but it sounds like more.
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About me: Married 45yo mother of two girls. In July 2014, I hit my head on the side of the pool; since then I've had 3 lesser concussions, one of which was due to MVA.

For the 5-10 years prior to that I’ve had what I now realize were possibly 20+ undiagnosed concussions or sub-concussions. Likely most of these result from Duane's Syndrome, for which I now have prism glasses. Have successfully done vestibular therapy and plan to start vision therapy.

Current companions: Significant depression, anxiety, hyperacusis, difficulty with verbal expression (recall & word mixups), mild spacial/vestibular issues. Feelings of disconnect in relationships.
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