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Get an advocate if you are alone.

Listen to your body. Write down all your symptoms even if you think it may not be anything important.

Find a support group or a neuropsychologist to talk to that will understand what you are going through.

1. Don't go to just any neurologist. If you can't research it, ask someone who loves you to do it for you. Mine was okay, but told me several things that are not true, didn't get me to see a neuro-opthamologist, and just didn't seem to offer me very much guidance. I really had to fight for my treatments, and because my brain function was compromised, I struggled to do this for myself.

2. Ask for help. From everyone who loves you. Help with car rides, emotional support, making appointments, paying bills, child care, etc.

3. Try to get the people you love to understand what you are going through, but if they don't understand, limit your exposure to them or if you can't do that, then take them to therapy with you or to the doctor with you, so that maybe someone else will help them understand.

4. Bring someone with you to as many doctors' appointments as you can. I wish I had done this! You may not be able to advocate for yourself or remember the information you are told.

5. Keep seeking answers until you find them. I had headaches from three different sources – neck injury, head injury, and vision-related issues due to the concussion. It took different treatments to address these three different issues!

6. Denial can kill. Looking back, it doesn't seem possible to me that I didn't figure out what was going on for so long. After my second concussion, I just didn't want to have another medical issue. (I'd just been diagnosed with hypothyroidism.) I didn't want to be a burden to my husband. I didn't drive for three weeks but then determined I was fine. Eight months later, my cognitive symptoms led me to crash my car, which served as a reality check but also worsened my symptoms.

7. Don't trust your doctors, not any of them, not fully. I had a few good doctors, but even the best of them made mistakes. My overworked PCP (whom I loved) sent me to the wrong doctor, so though I thought I'd been given the okay from a neuro-Opthamologist, I'd actually seen a retina specialist but it took me a few months to figure out. My neuro-optometrist actually triggered my biggest setback by putting me through some rigorous tests the day after my vision therapy. An emergency room doctor neglected to tell me about an anomaly in my upper vertabrae that, as it turns out, was causing my headaches. I only found this out by requesting my medical records several months later. By then, a new physical therapist had already figured out and fixed the problem! Doctors are fallible. They are people. It is important not to put blind trust in any of them.

8. Don't push yourself. Don't push past the pain, not even if it's a doctor or therapist that's pushing you. Learn from my mistakes. Take a stand, and don't let anyone talk you into doing something you are not comfortable doing. I've had three significant setbacks, and I've only recovered fully from one of those setbacks. I'm still struggling to get back to the more manageable level of eye pain, strain and photosensitivity I had in February. As of right now, I can't read, write, drive a car, or use a computer without feeling significant eye pain, and I can't go outside without sunglasses and a safari hat. I can't seem to lower my activity level enough to really heal. It's very frustrating!

9. Keep a journal to track your symptoms. It will help you figure out what helps and what hurts you, but most importantly, you'll be able to see yourself getting better over time. It has been very helpful for me!

10. Don't lose hope. I'm still trying to make myself follow this piece of advice, because I am scared that my vision will never get better, but I have to believe that I will be able to read a book and go outside without a hat on a year from now. That would be progress. Those are my goals, and anything beyond reaching those milestones would be a bonus.

I wish I would have known that there are some people, even professionals and loved ones, who just won't get it. And even more importantly, that stressing about them "not getting it" and feeling all defensive and indignant, was NOT worth the energy. It took away my sense of peace, which affected my healing.

I wish I would have gone easier on myself because although it seemed like an eternity off work, it now seems like it was a blink of an eye. Shorter than a maternity leave. And stressing about it did me no good.

I wish I would have known how to disengage from the anxiety caused by this injury.

But overall I wish I'd learned sooner how to live in the moment, and be grateful. I'm thankful for some suffering to teach me these things, and I pray to never forget.

I'm indebted to this place, the advice found here, particularly from the committed members who never give up on us newbies (that's you Mark... Thank you!) and I praise the invention of the ICE PACK!

Things I wish I had known and I now share with everyone who asks:

1. Be present - all of us who have suffered head injuries know that the present moment is incredibly painful. I remember longing for the past when i was in the shape of my life and projecting myself into some greater future. Instead, I learned, in time, to accept where I was right now. Breathing, being. Appreciating the moment as it is.

2. Clean up my diet - I now do not consume sugar (except fruit & raw, organic honey), alcohol, caffeine in any form, pesticides, and gluten.

3. Light exercise can be beneficial - the Buffalo Clinic just came out with a new, conclusive study about the benefits of light exercise after a certain period of time (I believe 30 days) of being Post-Concussive. I look forward to my walks and yoga every day.

4. Change your thoughts, change your world. Where you put your thoughts is incredibly powerful. Choose to put them where you want them to be.

5. Meditate - Once I started to meditate and do visualizations of how I wanted my life to be, I started to heal. I started to read again.

6. Laugh - I went to improv comedy shows to help with the depression. Now I take classes!

7. Know that the body can heal from anything. You are not the exception to the rule. You just first have to believe that you can.

With so many healing wishes,

Amanda
*admin edit*

I wish as a former professional writer I knew it could take me a week to come up with this list.

1) Get an Advocate - Find a good advocate to take with you to all doctor appointments: friend, spouse, parent, older child, co-worker - anyone that is willing to be your voice when you can't find your own AND will fight for you. This person should:

• take notes,
• educate themselves on tbi/pcs to know what questions to ask,
• know your symptoms & your progress,
• ask for copies of your records to keep for the future,
• coordinate your healthcare when you cannot,
• won't take "no" for an answer and do anything it takes for you to get the best care available.

2) Find specialists in TBI/PCS - Do your research to find specialists in tbi/pcs. NOT all doctors are educated, experienced or specialize in the nuances of brain injury or PCS.

• I never thought to ask a local tbi specializing attorney for their doctor referral list, but hindsight allows me to see they know the right specialists to see for tbi/pcs. It doesn't hurt to ask even if you don't need an attorney.

3) Contact your local Brain Injury Association - if in America here is the link where you can find local resources - http://www.biausa.org/

4) It's Okay to ask for HELP!

• Asking for and allowing someone to help can be a humbling experience. It's hard, I know.
• Allowing others to help you can empower them with a sense of purpose which also empowers you.
• Be as specific as you can regarding what help you require.
• Communication is complicated when you can't find the right words to ask for your needs to be met in the first place. It's a learning process on both ends. Keep asking. Don't give up until your needs are met.
• Understand that loved ones might fail you when you need them most. It happens. Let it go and move on.

5) 10 steps forward, 11 steps back -
My neighbor discovered and made me aware of this process at work watching me over the first 2 years post-injury.

• As the brain rewires itself making new neural pathways: some symptoms might improve while others regress.
• It sucks.
• It is frustrating.
• Don't let this discourage you. It's part of the process.

6) Humpty Dumpty Syndrome - All of the king's horses and his men actually can miss some pieces when putting you back together again.

• You might feel: broken, that you lost yourself, confused, hollow, missing all your puzzle pieces, like an alien in your own body, not know who you are anymore, like you have memories of another person's life that is no longer your own AND are stuck in a strange body without the benefit of a users manual on how it operates. It is a surreal sensation.
• This sensation is more common than I thought.
• You are not alone.
• If you feel this way - Welcome to the adventure of a lifetime! You get to discover a new you. Hold on to this thought when depression envelopes you.
• I wish I could see this sensation as a gift of rebirth when it hit me, but I had to go through the grief process to accept the loss of the former Kristy to see this new one is just as good, if not better.
• Stop the negative thoughts and replace them with positive ones. My son put sticky notes on the fridge to remind me.
• Fake It Until You Make It - does in fact work.
• You will make it through.
• Coping Tools: Antidepressants, counseling, friends, family, furry friends, co-workers, classmates can pull you through - if you let them.
• Friends remind us who we are when we forget.
  
• Coping Tools II: Find new traits, abilities, skills, interests about you NOW to fill the void of loss.

7) Laughter IS the best medicine! Find humor in the small things, big things and ordinary things - laughter can pull you through. My humor can border on inappropriate, dark and twisty. I own it. It's mine. If other's don't understand, it's their problem. (My son nicknamed me "Brain Damage", my mom was outraged, but I laughed until I cried. It felt great!)

• Laugh at yourself.
• Laugh with others.
• Laugh with joy at your progress.
• Laugh with tears if you regress.
• Laugh when you cannot find your words - it beats frustration. Literally.

8) Silver Linings - Call it a playbook or embracing your inner Pollyanna, but find your silver linings.

• Seek them out anywhere and everywhere - especially when you don't want to. Fight for the positive. It helps.
• In order to accept losses, it helps to fill the void.
• List your progress so you remember how far you've come. I forgot, the reminders helped.
• Make a list of the bad and find a positive that came from it. Update the list. Sooner or later you will see the positive outweigh the negative.

• * I lost: my car, career, house, income, lifestyle, ability to walk & talk, my brain doesn't do techy geek anymore.
  

  BUT

  * I gained: the ability to draw, a profound inner peace I never knew, deep compassion for the suffering of others, inner strength, learned how to live in the moment, I learned how to really listen to others, I still have something to offer, I'm more knowledgeable about tbi/pcs than some doctors, I'm an excellent massage therapist that specializes in brain injuries.

9) Coping tools! Sensory overload and beyond...

• Fatigue - sleeping is ok. You're not lazy, you have a brain injury where sleep allows your system to repair damage.
• Brain Fog - Bodywork like: Massage, Shiatsu, Reflexology help ground you in your body. WARNING: sometimes our body is in so much pain it copes by altering awareness. Once fully grounded in your body, you may become aware of how much pain you're body now feels. The pro is the pain can now be addressed.
• Light sensitivity - Sunglasses. Try different colors and levels of darkness for inside and outside use. Go cheap and buy several for each purpose and multiple locations.
• Noise sensitivity - Noise canceling earbuds, plugged in to music or your pocket help filter out ambient noise. See an audiologist who can diagnose if you have physical ear damage or possibly hyperacusis where your brain can't filter the noise - musician ear filters can be prescribed. The filters run about $80 US/ear. Earbuds are an alternative if you can't afford the custom filters.
  

  * Close your eyes to listen - Many times sensory overload prevented me from being able to hear conversation directed at me. I learned by closing my eyes (effectively shutting off visual sensory input), I could hear and better comprehend what was being said. It was a Duh! moment. WARNING: I advise explaining your actions to others before shutting your eyes as... ahem...they find it rude unless they understand what you're doing. ;-)

• Focus - My neurologist (also ADD/ADHD knowledgeable since he's experienced misdiagnosis of ADD w TBI) stepped out of the box to try ADD meds. It took awhile to find one that worked. This is the closest to feeling clear minded since my accident 6 yrs ago. Not all doc's approve of this treatment, but hey - it's worth a discussion.
• Limits or Boundaries - Learn your limits. Others might try to tell you not to set limits because you're setting a mindframe of limiting yourself. Limits are more like boundaries that change as we do: they are flexible, they expand, they contract. Limits are good. Limits DO NOT mean you are limited. Limits are a stop-loss boundary: They tell you where you need to stop before you find yourself drained, emotional lability sets in, you over exert your physical body, you drive before capable, you do damage, etc.

10) Acceptance

• Does not mean giving up! - Accept where you are so you know your limits for your own safety. Reset the bar constantly to move beyond.
• Change happens: your brain constantly rewires itself, relationships come & go, you may lose and find yourself over and over again. It's all okay. Change is the constant! Make it work for you.
• There are NO RULES - regardless of what doctors might believe.
• "No" is not always the final answer.
• TBI/PCS does not define you.
• Others will not understand. It hurts. Let it go what you cannot change.
• Others will want you to be who you were before. Life experiences change us, we cannot go back. Move forward even if others cannot.
• Education on TBI/PCS is needed - become an educator.
• You might never get the life back you had before PCS. Make a new one that suits you.
• Anger can be a great motivator - use it constructively while not lashing out at others.

While long, I hope my experiences can help another. Best wishes on your recovery.

~Kristy

Just because a doctor has never seen a symptom before means just that. HE has never seen it. It doesn't mean it can't or doesn't exist for you and others.

Shop for the best doctor for YOU.

Make a binder with calendar pages to keep track of appts. Make a section for each doctor, therapy, medications, and a daily life section to take notes about your day. Take with you to every appt.

Since it is so difficult to find a good doctor, it helps to take charge of your own recovery. If a vestibular specialist is helpful, great. Just don't expect every specialty to be able to help.

Concussion and mTBI symptoms are not treated as a group. They should be addressed individually. Some, if not most need time.

Don't rush! Everything takes a LOT longer to do than before. Rushing will only exacerbate your symptoms, so take a chill pill and relax.

Be honest about how you feel to anyone you trust. They might be able to spot a problem before you even realize it is one.

If you feel like you need to take a day off, do it. Listen to your body and your mind. If you don't feel right then don't push yourself. You won't do yourself any favors.

Hi, I am a first-time poster! What I did not know to go along with you and Mark in Idaho is that most neurologists aren't familiar with concussions, and it is absolutely ESSENTIAL to get a good Neurologist and Neuropsychologist if you suspect that you have been misdiagnosed. My first Nuerologist was going to return me to work 2 months after my injury (rear ended while stopped in traffic), stating my mental confusion and inability to talk was due to "the meds I just discontinued." Now, almost 1 year post-injury, I have seen 2 other Neurologists and the second of the 3 was convinced I did not have a "severe head injury because I was never in a coma" and said I was " behaving" like I was more injured than I was. I had no choice but to believe her, and tried desperately to "behave " better, but still experiencing speech problems, light and noise sensitivity, daily headaches, extreme fatigue, huge overstimulation issues, and I was a clinician and public singer/speaker prior to my accident who never had trouble with communication or crowds of people!
Finally, I was referred to a Neurology specialty practice in Akron, OH. where I was given a Neuropsychological test(s), which showed moderate to severe cognitive deficits.
The road to recovery is still ahead, but I am grateful it was finally properly daignosed, and I continue on...
I will be entering a brain injury program soon, thanks to the Neuropsychoplogy tests and their recommendations.
P.S. Let your family?spouse/friends be your advocate!! They know you best, and can often see things you can't. Good luck to us all, and keeping you in my prayers!!!

Grieving the old me. Wish I knew more about realistic recovery expectations. I think I would be farther along if I had understood more about recovery. It is all so immediate and most care providers try to be cheerleaders as opposed to be mentors in a long and often inconsistent process.