9 Tips to Starting Your TBI Recovery Process

Kristine Freelund
9 Tips to Starting Your TBI Recovery Process

1. A clean MRI does not mean you are "OK."

If you feel that something is wrong, keep pushing for testing or have your loved one push for you. Do not trust that your GP is well versed in what a TBI means. Think of them as a gatekeeper to get you to people with the real expertise. 

2. Symptoms change.

You may notice a lot of them. Don't dismiss anything and keep a journal. I originally tested negative for aphasia, but it came up a month later. Fun times. You will be dealing with so many changes that sometimes you don’t even realize that a symptom or problem is happening until another clears up and your brain finds room for identifying it. 

3. Do not hide or minimize your symptoms or disabilities.

I know it's hard and almost impossible to accept how much you can't do anymore, and the only thing more impossible is trying to explain what you are going through. But hiding and minimizing only hurts you.

4. YOU ARE NOT CRAZY. You are not alone.

There are support groups, and the best resource for me was seeing a speech therapist. I didn't think I needed it because my speech was…Ok. But go. A Speech-Language Pathologist (SLP) helps with many brain injury issues including speech, language, social communication, cognitive communication, and swallowing disorders in children or adults. Go to every specialist you are referred to if you can afford it. 

5. If diagnosed with PTSD, seek that help and follow up.

Throw away any stigma or preconceived idea you have about what PTSD means and call. I waited almost a year to go, and my only regret is that I didn't go right away.

6. Respect your brain.

REST. A lot. Like crazy amounts. Like newborn baby or cat amounts. And get over it if you feel lazy or see a specialist to help you sort through why you feel that way. 

7. Love yourself.

8. Both you and your supporters should read Brain Lash by Gail L. Denton.

Actually, ask your doc if you should be reading first…but your loved ones and supporters can gain some pretty great insight by cracking it open to any page and reading an entry. You don't have to read it straight through which great. 

9. Learn to meditate.

I thought this was such weird advice, and I still struggle with it...my brain can't handle workouts or yoga yet, but meditation is key to healing. Try a guided one from YouTube. There are guided meditations to help you sleep, and there are guided meditations to help you feel less stressed.

Posted on BrainLine July 5, 2016

Comments

Why water? I’m a new and secondary caregiver to my boyfriend, and am just learning. Trying to figure out what causes his serious headaches. Haven’t figured out a pattern yet.

Look for a new doctor.

I'm glad I found out about this diagnosis and online information. My main neurologist (I have had three for this last head injury) identified and supported all my symptoms but didn't give it this diagnosis.

This helps guide me in my personal understanding and self help in addition to helping my family understand.

Water. You need water as much as you need sleep

I recommend botox for chronic migraines. It works better than pain medicine!

I suffered a mild TBI in February and a few weeks later was diagnosed with Horners Syndrome. I have been through so many CT, MRIs, MRAs they found something on my collar bone I was told maybe a Pancoast tumor. This was May 6th I have not seen my GP since, I feel like I have been put out to pasture! I have to call every 30 days to get a new RX of Lortabs for the cluster headaches. I feel like I should be seeing a specialist for long list of symptoms. The Dr wouldn't return my phone calls any suggestions??

I am so glad I joined this group last week. It has helped me tremendously especially in realizing I'm not ALWAYS wrong like I felt. It also helped me come to terms with eliminating toxic relationships which sadly at my age included some long time "friends" and an evil sister. Thank y for helping me realize I don't have to give in and take it any longer. I am stronger already as I accept my new identity. Thanks to Craig from "second chance to live" I will keep going up, not down

I can vouch for meditation. I first read years ago that it opened up new neural pathways; and so, I was hooked. Meditation, which I've done for years( using Centerpointe's programmed meditation soundtracks), and then yoga the last 2 yrs. Both huge in my recovery. And I truly believe that; if you can breath, you can do yoga, and sustain great benefits from it.  Centerpointe.com Peace & Love!☀🌻

Thank u this helps a lot I am a RN who had to take early retirement after a closed head injury from MVA 1 yr 5 mos ago am I am not the same woman afterward I have heat intolerance minimal patience more isolation it's hard to focus on task and insomnia so day time fatigue periodic not recognize words I share this only to say u have to know and accept the change and go forward but let u r loved know u need to care for u r self first u were hurt bad and embrace u r own healing and new self

Helpful, please continue to share posts about TBI

Exercise is vital as well. Initially I was told I would need 24/7 care, now I'm planning on graduating college to help others with TBI do the exact same thing. It is possible, you just need the correct tools, which unfortunately most do not. I however do.

The fact of the matter is that doctors graduate from medical school and residencies with virtually no understanding of the long-term and permanent cognitive impairments caused by brain injury, how to recognize the symptoms, or what the appropriate follow-up would be. Even neurologists, psychiatrists, neurosurgeons, rehab physicians, and ER physicians are not adequately trained to deal with the chronic phase of brain injury. I went to the brain rehabilitation clinic at Mayo Clinic and was not offered anything substantial. I had to find what I needed (intensive neuropsychological/holistic cognitive rehabilitation) on my own, and I had to pay for it out of my own pocket. -- Maria Romanas, MD, PhD

If I can add just one thing, it's be patience. For the caregivers and supporting family.

Thank you for these wonderful tips! It would have helped me a lot more if they were available 22 years ago.

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