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Traumatic Brain Injury: Come introduce yourself

Posted by Colleen Young, Connect Director @colleenyoung, Nov 7, 2019

Welcome to the Traumatic Brain Injury (TBI) group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people who know first-hand about living with a traumatic brain injury. Together we can learn from each other and share stories about challenges and triumphs, setbacks and the things that help.

Pull up a chair and connect. Why not start by introducing yourself? What is your experience? Got a question, tip or story to share?

Interested in more discussions like this? Go to the Traumatic Brain Injury (TBI) Support Group.

m2murphy256 | @m2murphy256 | May 1, 2020

Thanks Maggie! I appreciate the info about prism glasses. I’ll bring that up to my primary and my P.T.
Stay safe!

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westd | @westd | May 1, 2020

Hello Everyone, my name is Dan I’m excited to be a part of this group and to learn. My TBI’s are dirt bike and car accident related. I believe to have had four TBI’s, two of them I was hospitalized for specifically. Thanks to Mayo Clinic for putting this together.

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1 reply
mkgarrity | @mkgarrity | May 2, 2020
In reply to @colleenyoung "Hey @hevykevy, I bet you're not the only ones with eye issues post TBI. Would you..." + (show)
@colleenyoung

Hey @hevykevy, I bet you're not the only ones with eye issues post TBI. Would you mind starting a new discussion about it?

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Centra care in Sartell mn, a concussive clinic thatI I attend and treated by neurological optometrists. The various exercises involve body-vision coordination. I am told that my tunnel vision is due to an associative malfunction in the central nervous system. I also have prism glasses to help with double vision. I will also be taking a drivers test through the Kinney institute at Abbot Northwest to determine wether I can keep my drivers lisence and be able to drive again. Keep me posted.
mkgarrity

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mkgarrity | @mkgarrity | May 2, 2020

I am being treated by the St. Cloud Hospital andCentracare in Sartell mn which has a concussive clinic thatI I attend while treated by neurological optometrists and therapists. The various exercises involve body-vision coordination. I am told that my tunnel vision is due to an associative malfunction in the central nervous system. I also have prism glasses to help with double vision. I will also be taking a drivers test through the Kinney institute at Abbot Northwest to determine wether I can keep my drivers lisence and be able to drive again. Keep me posted.
mkgarrity

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mugglemary | @mugglemary | May 2, 2020
In reply to @m2murphy256 "Hi! I’m Mike from a Minneapolis southwestern suburb. Last mid-October I was knocked down a flight..." + (show)
@m2murphy256

Hi! I’m Mike from a Minneapolis southwestern suburb. Last mid-October I was knocked down a flight of stairs and was unconscious for anywhere from 5 to ? minutes (I was alone at the time). The result (besides 3 broken ribs) was a severe concussion and subdural hematoma that bleed in 4 areas of my brain. I finally finished my hospitalization the day before Thanksgiving - when the recurring periodic bleeding finally completely stopped.

Overall, I’m doing fairly well. I had been going to physical and speech therapy regularly until we all got the Stay-At-Home order, and next week I will resume speech therapy via telemedicine. I still struggle daily with a fuzzy feeling in my head (iI often say it feels like I’ve got a head full of cotton. But that is manageable. My biggest concerns relate to my dizziness and word-finding problems.

My hopes are that through this group forum I can find out if I’m an oddball or if others have similar problems.

To clarify, my dizziness is not like the room is spinning (like I’m drunk) it more unsteady- like I’ve just stepped on the dock after hours of being at sea. Also, it’s not constant - there are good days and then there are days I can only get around by using a cane (otherwise I bounce off walls and furniture as I walk like a drunk).

So, that’s my story and I look forward to “speaking” with you folks. Oh, one other thing I should mention is that I’m 71 years old and not exactly a frail old man - I’m 6’4” and 250 pounds.

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You’re a member of the club! My dizziness is exactly as you describe, and I can’t predict when it’ll happen. I lie in bed and turn my head and I get dizzy. Sometimes when I’m out and about, I stumble and worry that people will assume I’m drunk. PT told me to move my eyes first, gradually, in increments as I turn my head. Sometimes I remember.
The word-finding problems drive me nuts. What my speech therapist told me was, don’t panic, think of things that it’s associated with, or how it’s used and don’t worry, you’ll get it, or the person you’re with will come up with it. I’ve used online search sometimes. The worst thing is people saying “well, that’s just getting older”: I was in the hospital, received pt and speech therapy, and also have a card in my wallet saying I have a brain injury. So, no, it’s not just getting older.

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1 reply
mugglemary | @mugglemary | May 2, 2020
In reply to @westd "Hello Everyone, my name is Dan I’m excited to be a part of this group and..." + (show)
@westd

Hello Everyone, my name is Dan I’m excited to be a part of this group and to learn. My TBI’s are dirt bike and car accident related. I believe to have had four TBI’s, two of them I was hospitalized for specifically. Thanks to Mayo Clinic for putting this together.

Jump to this post

Hi, Dan! Welcome to the group!

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1 reply
mugglemary | @mugglemary | May 2, 2020
In reply to @hevykevy "Welcome to the group, Maggie20. I can sure relate to the vision issue. When I woke..." + (show)
@hevykevy

Welcome to the group, Maggie20. I can sure relate to the vision issue. When I woke up in the hospital, I was seeing two of everything. One of them was slanted about 15 degrees. No matter how hard I tried, I could not correct this. Fortunately for me, it went away, mostly. I still see double on occasion, and I have shadows next to letters when I read. I need to use eye drops now. It is amazing how much we depend on our eyes.
I can't make any promises for your recovery, I have been amazed at our body and brain's ability to heal itself. At first, I wasn't aware of how much damage had occurred, as I went back to work within 2 weeks of the accident(I was only working half days), but as time went on I realized there were more things that I couldn't recall. But things continue to improve.
It is good to hear that you are getting help and that you are improving, even if it is a huge test of our patience. Also good to know that you are in tune with your current limitations. It is much safer for all of us, but also helps us mend faster if we don't over do it.

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I thought that since I’d been resting for two months, I could go back to doing things I would in the past. Bwahahahaha that was a big slap in the face. Recognizing my limitations is hard. I’ve often found myself letting my grocery cart drag me around the store.

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mugglemary | @mugglemary | May 2, 2020

I’ve been thinking, sheltering in place is like I’ve been living since my slip and fall, except no visits to friends, and no doctor appointments.

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m2murphy256 | @m2murphy256 | May 2, 2020
In reply to @mugglemary "You’re a member of the club! My dizziness is exactly as you describe, and I can’t..." + (show)
@mugglemary

You’re a member of the club! My dizziness is exactly as you describe, and I can’t predict when it’ll happen. I lie in bed and turn my head and I get dizzy. Sometimes when I’m out and about, I stumble and worry that people will assume I’m drunk. PT told me to move my eyes first, gradually, in increments as I turn my head. Sometimes I remember.
The word-finding problems drive me nuts. What my speech therapist told me was, don’t panic, think of things that it’s associated with, or how it’s used and don’t worry, you’ll get it, or the person you’re with will come up with it. I’ve used online search sometimes. The worst thing is people saying “well, that’s just getting older”: I was in the hospital, received pt and speech therapy, and also have a card in my wallet saying I have a brain injury. So, no, it’s not just getting older.

Jump to this post

My PT had to do that eye business for weeks - looking at an x in the wall and moving my head up and down, back and forth. Didn’t prove long lasting. There are days when I feel like Im sailing through rough seas all day long. Where did you get the I.D. Card? I’m an ex-Sheriff Deputy and I keep my old badge in my car because I know if I get pulled over for any reason I’ll fail a field sobriety test! A card would sure be usefull!

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2 replies
westd | @westd | May 3, 2020
In reply to @mugglemary "Hi, Dan! Welcome to the group!" + (show)
@mugglemary

Hi, Dan! Welcome to the group!

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Thank you! I’m wondering if it’s okay to post in chat group what medications others take and share what is working for me?

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