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.

Hi, thank-you for the great information. I am doing some of it. I love your idea to journal and celebrate improvements and do something enjoyable each day and keeping a list. Most of all to be thankful for the chance to go on. I thought my time on this earth was up the first day I started blacking out after my accident. I remember telling a nurse I worked with that day that I thought I was dying, and here I still am and I am truly grateful. I am grateful for the great team I have at centracare too. Your list is very well-organized. I am looking forward to trying some of it. Thank-you again!!!

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@mkgarrity

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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I actually go there for my rehab. They are excellent. Each therapist I work with has greatly improved my life one step at a time. You are right some of the exercises are so hard. I completed physical therapy and just started occupational therapy which to me is so hard compared to the rest. I never get up in the morning excited to do occupational therapy. That is for sure!!!

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@hevykevy

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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Yes I agree that line is hard to define until your brain is like "Woah what are you doing to me"? Interestingly, my psychologist I see at rehab told me the same thing today that I should separate my brain from me to explain why I can't do something. Also two days after I posted my difficulty with family gatherings, I was indirectly exposed to covid and had to quarantine, so now noone wants to be around anyone. It was a good save only since I did not get covid. So I feel like I have a chance to distance myself and reset limitations and boundaries when covid calms down and we can be around each other again. I agree the fatigue is very extreme and real and I am finally seeing that I l need to be selfish so to speak because over doing does hinder healing, and we are the ones that have to live with our brain. My mother gets it and told me the same thing. She took care of my father with Parkinson's so she sees similiarities with a brain not working properly.

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@totto

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

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You got it - I will send you a private email.

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Hi @heather1carland, welcome to the TBI group. Pull up a chair and tell us a bit about your story. When did you have your injury? How is recovery going?

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I wonder if support group members further along in their recovery journey recall what it was like the first year when symptoms are often more prevalent and prominent. Any tips anyone could share about early recovery vs. later recovery?

As for headaches, I'll steer you some postings under the Resources tab for this group and will reach out to you directly.
- Post Traumatic Headaches https://connect.mayoclinic.org/blog/traumatic-brain-injury-mrfi/newsfeed-post/headaches-1/
- Chronic Pain after Traumatic Brain Injury (TBI) https://connect.mayoclinic.org/blog/traumatic-brain-injury-mrfi/newsfeed-post/chronic-pain-after-tbi/

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@amoessner

I wonder if support group members further along in their recovery journey recall what it was like the first year when symptoms are often more prevalent and prominent. Any tips anyone could share about early recovery vs. later recovery?

As for headaches, I'll steer you some postings under the Resources tab for this group and will reach out to you directly.
- Post Traumatic Headaches https://connect.mayoclinic.org/blog/traumatic-brain-injury-mrfi/newsfeed-post/headaches-1/
- Chronic Pain after Traumatic Brain Injury (TBI) https://connect.mayoclinic.org/blog/traumatic-brain-injury-mrfi/newsfeed-post/chronic-pain-after-tbi/

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I was and always have been very fortunate that headaches have never been much of a problem for me. When I left the hospital 5 days after my accident, I was given a bottle of an addicting pain med. I never opened it. Even with a broken forearm and jaws, I had only minor pain.
My biggest issues were: My mouth was wired shut. All food & drink through a straw. Having my left arm in a cast made splitting firewood a little difficult.
Exhaustion was a real problem. I only had 6 weeks of part time work to finish up before I retired, I was able to get through 4 hour days.
Mentally, I aged 10 years in less than a second. My ability stay on track was gone. Any distraction and I forget what I was doing. I use Microsoft's To Do List to keep track of everything. It's on my phone, tablet and computer and it synchs. Even if I go to the hardware store to get 2 or 3 things, I need the list. It has been a great help as any improvement in my memory is so slow I can't tell.
I had dizziness at first and have noticed that it reoccurs if I do out of position work. Recently I rebuilt the axle on my boat trailer. That brought it back.
Another issue is that my symptoms are normal for people my age, but not for me.
If I have any advice that is of value, The most important is: KNOW YOUR LIMITATIONS AND LIVE WITHIN THEM!!! You only do more damage or slow down recovery if you don't listen to your body. Take a break when it is tired, feed it when it is hungry. Keep it hydrated. Be patient with yourself, healing takes a lot of time. I've been told many times that I have the patience of a saint, but when I had to be patient with myself It was a whole different story.

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