Traumatic Brain Injury: Come introduce yourself

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.

@mugglemary

I have indeed brought it up. First to my primary, then to all my therapy peeps, and the one thing that was helping was the acupuncture. Which Medicare and my car insurance people are now debating.

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I am on Amitriptyline 100mg each night. It has been a life saver from debilitating migraines. Prior to that, it felt everyday like daggers in my eyes and an axe in the back of my head.

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@m2murphy256

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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Yes, I was so afraid if I got pulled over they would think I was drunk or on drugs with my slurry language and bad balance. I have improved a lot but when I am exhausted I get wobbly and still slurr my language.

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Hi Colleen, I am trying to get familiar with how to use all the resources offered by the Mayo Clinic. Is this the main area where I can post questions about TBI and communicate with others living with TBI? Also do you recommend any other support groups to join as related to TBI?

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@totto

Hi Colleen, I am trying to get familiar with how to use all the resources offered by the Mayo Clinic. Is this the main area where I can post questions about TBI and communicate with others living with TBI? Also do you recommend any other support groups to join as related to TBI?

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Hi @totto, you are posting perfectly.

Totto, if you want to ask a question on a specific topic, you can start a discussion
Here's how to start a new discussion:
1. Go to the TBI group page: https://connect.mayoclinic.org/group/traumatic-brain-injury-tbi/
2. Click the grey START A DISCUSSION button.
3. Enter a title, like "What medications work for you?"
4. Write your message.
5. Click POST DISCUSSION.

I'd like to bring in @wendybia from the Brain Injury Alliance. She can recommend other support groups too.

@totto, what is your biggest challenge at the moment? What small steps are you taking on the road to recovery?

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@colleenyoung

Hi @totto, you are posting perfectly.

Totto, if you want to ask a question on a specific topic, you can start a discussion
Here's how to start a new discussion:
1. Go to the TBI group page: https://connect.mayoclinic.org/group/traumatic-brain-injury-tbi/
2. Click the grey START A DISCUSSION button.
3. Enter a title, like "What medications work for you?"
4. Write your message.
5. Click POST DISCUSSION.

I'd like to bring in @wendybia from the Brain Injury Alliance. She can recommend other support groups too.

@totto, what is your biggest challenge at the moment? What small steps are you taking on the road to recovery?

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Thank-You Colleen,
I am having a hard time with my fiancee's family putting demands on me to go to too many family gatherings. I cannot handle a lot of people and noise and they don't understand because I look normal and they have seen improvements I have made, so I think they think I am all better, even though, they know I am still in rehab. I had to attend three last minute gatherings in the last 10 days which to me is ridiculous. I spent the last two days in bed with a migraine, so I need to learn to say "No" just not sure how. Another challenge I face is scheduling breaks I need and not over doing it. I was always on the go before my accident and it does not come easy to me resting, but if I don't I have consequences. Small steps on the road to recovery... I have adapted to new ways to do things which is a work in progress. I got a lot of my balance back after being in physical therapy, so I actually am running again on my treadmill which is exciting. Running is my life line to fighting the anxiety and depression that comes with a brain injury.

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Hi Mike,
I like your thoughts on staying positive and accepting where you are. It is much easier said than done some days. I have not been able to return to work as I had a really hard high-stress job, so I try to look at it in a positive way that I get to find a new job which I have no clue yet what I can do, but maybe it will be something I really love. I am excited to meet with someone in vocational rehab. Since you are ahead of me timewise in recovery, can you share with me some of your go to strategies for surviving with a brain injury?

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Centracare in St. Cloud has a clinic that has programs that have provided support for improving balancetunnel vision and memory aids. They provided skilled support from personal with expertise in ballene improve ment, neurooptometrist, and cognition. All was payed for by blue cross and Medicare. The exercises were not easy but worthwhile. I also developed my own exercises using devises such as a bossy ball, medicine ball and a small device that returned a ball to improve my periferal vision. Call me at 320 2178888 if you want more details.
Mike Garrity

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@totto

Thank-You Colleen,
I am having a hard time with my fiancee's family putting demands on me to go to too many family gatherings. I cannot handle a lot of people and noise and they don't understand because I look normal and they have seen improvements I have made, so I think they think I am all better, even though, they know I am still in rehab. I had to attend three last minute gatherings in the last 10 days which to me is ridiculous. I spent the last two days in bed with a migraine, so I need to learn to say "No" just not sure how. Another challenge I face is scheduling breaks I need and not over doing it. I was always on the go before my accident and it does not come easy to me resting, but if I don't I have consequences. Small steps on the road to recovery... I have adapted to new ways to do things which is a work in progress. I got a lot of my balance back after being in physical therapy, so I actually am running again on my treadmill which is exciting. Running is my life line to fighting the anxiety and depression that comes with a brain injury.

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Welcome to this group Totto. Sorry to hear about your struggles. In one of my previous posts I mentioned that our limitations are difficult because often we don't know where the line is until we have crossed it. Then we pay the consequences.
With your family gatherings, it is difficult to say no, but sometimes we have to. A simple "right now my brain can't take it" should work with understanding, caring people. COVID also gives you a good excuse. If you do go to a gathering, can you do what my wife does, off to the side with just 1 or 2 others, away from all the noise. Hard to do for an extrovert, but you have to think of your whole self. Also, there are no rules about how long we have to stay. Very hard for Minnesotans, but going for part of the time will let them know you enjoy being part of the family, but leaving early will help them to know your limitations. I'm finding out that these limitations are not short term. It's been 2 years now for me and my energy level and stamina are not what they used to be. You are much younger, but that is all the more reason to listen to your body and get your needed rest. Over doing it really hinders the healing process.

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Hi everyone - what a beautiful and supportive group this is. @totto as you can see there are some really amazing people here. The advice from @hevykevy is spot on - (and I hope they don't mind if I borrow some of it as well) Most support groups across the state are not meeting right now. There are some in the metro area that are meeting virtually and I would be happy to help you get that information. This group has been stepping up to the challenge in our very changed world. I am excited to hear what others might have to add to this conversation about their strategies. What amazing people you all are.

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@wendybia

Hi everyone - what a beautiful and supportive group this is. @totto as you can see there are some really amazing people here. The advice from @hevykevy is spot on - (and I hope they don't mind if I borrow some of it as well) Most support groups across the state are not meeting right now. There are some in the metro area that are meeting virtually and I would be happy to help you get that information. This group has been stepping up to the challenge in our very changed world. I am excited to hear what others might have to add to this conversation about their strategies. What amazing people you all are.

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Thank-you Wendy. I would love to have the information for any support group meeting now.

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