Lynlee,
You are doing an amazing job with a long series of blows to your head and blows emotionally that were probably related to PCS healing phases. Too much was expected from you when your brain was not able to go that fast. My son's neurpsychologist used a great analogy when he was suffering in the throws of peaked PCS. He said it is hard to get back on the train that is going 100 miles per hour when you can now only go 50. After his injury, he attempted to do work in 5 very difficult classes, a varsity sport etc. and quickly flopped and was very symptomatic. His train needed to slow down awhile and the school supported this by his advice and reports. You did not have the priveledge of this support, likely just due to ignorance. So much is available only recently. One neurologist in a local ER, thought that my son's symptoms were because he was understimulated and needed to be pushed harder. I am a critical care nurse with alot of basic common sense, thus , completely disregarded her advise, thank god! My point here is, you are doing the best you can and should never think anything less, think about how resourceful on your own you have been. You really are getting to know yourself. Of course, you are going to get discouraged and down, you have every right to be, allow yourself that but do not look at that as a flaw. Be confident and embrace yourself for who you are and the vigilant healer and advocate for yourself that you have been. Most PCS sufferers are not entering threads here. They have difficulty being their own advocates and suffer alone. You are not only compassionate to others here, you are respecting yourself enough to learn more. That is a brillant behavior! Do not let those demons in your head put you down, you are awesome. Confidence in knowing you are doing your best will help you alot. Stay well and strong!

Top of the morning Lynlee. Hope all is going well and that you learned something new at your seminar. It's amazing that I can set here and enjoy my morning coffee, look across the desert and talk with someone who is hafe way around the world that has suffered the same type of injury I have and who is trying to recover from that injury and all the side effects PCS/Chorionic fatigue. It take an incredible amount of inner strenght to recover from TBI. and to be able to shair your pain in this recovery process is part of the healing process. Sometimes it just hurts and that is part of life and I think part of the healing process. It's when we can shair our pain and talk about in a positive constructive way that we began to heal.

One of the issues with people with TBI is that it takes so much energy to function in our society / community that we have to cover up whats really going on inside. We are basically in a survival mold and we have to be in order to survive and function because people do not understand that you a dealing with a brain injury and that you are healing and that takes time.

We also have to deal with our inner selfs and know that that old person is no longer functioning and the new person is running a we bit slow. Hard to accept when you are an over achiever and you want it done right now.

One thing I have learned is the PCS/CHRONIC FATIGUE is these are the symptoms not the cause. The cause is the TBI and that is what needs to be healed. The pain is the nerve damage in the brain and body and those nerves need to be healed.

Keeping life simple.I've been working on that for the last seven years getting closer.

It sounds like your starting to heal , because you are able to talk about what's going on and this is good.

This is a good forum because the people here are trying to recover from there injuries and illness and it is a good place to learn and share. Sharing is part of the healing process.

Keep on Dreaming Lynlee. Our dreams turn into visions our visions into resolve and our resolve turns into power and our power turns into inner strenght and our inner strenght into our character and then we realize that we are here to help other people and when we set our minds on helping others we in turn help ourselves.

It is what I think and what I believe that produce the power to over come this TBI.

Still working on my treatment plan have about 10 items that need to be addressed and once this is in written form I'll go find the people to help me over come these issues.

Life is good.

Jeff

thank you so much Nancy and Jeff - was being a bit of a misery! I will tell all re the seminar soon/later as lots to tell, very tired today, am at work (in my physical presence - not much of a mental presence is happening though - lucky to have such a tolerant employer). Just sneaked a minute on the internet - am supposed to be having my morning snooze. Suggest that you google Barry Willer and have a read up on his ideas in the meantime. Lynlee

I am interested to hear what Barry Willer said in the seminar. He has written some good articles on this subject.

http://www.ubortho.buffalo.edu/concussion/research.html
Management of Concussion and Post Concussion Syndrome
&
Regulatory and Autoregulatory Physiological Dysfunction as a Primary Characteristic of Post Concussion Syndrome: Implications for Treatment

HI.............I haven't done my report back on Barry Willer yet, my computer at home is having some problem - something to do with the wireless router ???? I am certainly not an expert so hopefully things will be back right for the weekend for me to do this. Am at work at present. I had a nasty time with the psychologist yesterday and will tell about that as well. Have a great weekend everybody - did you know we are in the middle of our spring time and all the blossoms are out on the trees - makes you feel good just looking at them!!!
Lynlee Good grief just tried to edit the tilte - it was meant to say sorry - now I do sound like a nit wit!! Groan

Hi Lynlee, thanks for the info about Barry Willer. I'm looking forward to your report of what your learned. I read about the program at the university in Buffalo and wish it were available in my area. I live in the "Show Me" state (Missouri) and the leaves are turning to beautiful orange and red tones. It's been sunny all week and I walked to the mighty Mississippi, about 1 1/2 miles from my house, a few days ago. My legs are still sore, but it's the good kind of soreness, ha. I hope you are able to enjoy your spring, maybe it will give you some renewed energy.

Hi Sissy, Jeff and Nancy - finally wrote about the Barry Willer seminar. I was so disappointed, as I didn't mention - actually forgot to mention that he believes that there is no cure for me - people like me at present. That was on Tuesday and then on Thursday I saw my psychologist and that was even worse, left in tears as she believes it is a waste of my energy hoping - some times I wonder if I actually know what I am doing or should be doing anymore. It appears that I try and hope too hard - kind of like a reverse bad attitude. All I want is to be able to stay awake all day - I don't care about the other stuff. I don't think I am being selfish and greedy wanting to stay awake!!!! I guess compared to many people I am lucky - I can still go out for a walk, work 3 hours a day (and sometimes I wonder if that is charity by my employer of 10 years) drive and I even taught myself how to do sudoku - the novice one. And Jeff there is your friend Joe - so I should shut up and put up!!! I am going to bed now - it is coming up 10 o'clock and I am over tired and grotty - good night from Lynlee

Lnynee, I'm impressed with your report and feed back on Berry Willer alot of positive imformation Thankyou. I printed off a copy of your report, hope you don't mind so I can use this information in regards to creating a treatment plan still working on the outline. The information will be very helpful when I set down and talk to my PCP, Who is a real Dr. and cares about my well being, my healing and my quality of life I live. Your report has given me some insight into some issues in regards to TBI, that I could not put my finger on.I'll need to think about this for a few days.

One thing I did learn from My neropsycologist when I was first tested, 6 mouths after the trauma was that I have an invisual disability and 2. That that treatment programs are set up for failure. This information help me from getting blind sided by the professionals who where setting me up to fail.

I did try to return to work, full time at the 2 year mark and ended up back in the hospital for several days and spent the next 3 mouths walking around in a daze. Not Cool, this has happen several times in this recovery process.

It has been taught to me that success and failure are never final, and that neither count for very much in the final assessment of any man who has done his best. [ writen by and Irishman ]

Have I done my best today? Kaizen

It's time for me to start thinking outside the box.

Enjoy your weekend. Jeff

PS: Ran across Joe yesterday. He was in the Parking lot doing wheelies in his wheel chair pushing the envelope to see how fast he could go, big smile on his face, maybe he was pretending he was back on his bike doing 100 and catching some wind in his hair. miss that rush.

Ok back to work I have a mountain to clime. This TBI is just a bump in the road.

Hi Jeff - n. What exactly is an invisual disability?

And what happenned when you worked full time and ended up in hospital? At about 3 years when my hours at work were pushed up to 6 hours per day I ended up in hospital twice - the first time was when my blood pressure went crazy resulting in a c/t scan thinking stroke - turns out it was exhaustion - as the ACC (insurers had been pushing me to increase my hours - give me a challenge and away I go) and the second time was very tired and literally fell over - knocked myself out and cut my face on an umbrella urn. After a day in hospital discharged myself as I could see that nothing was going to change and I couldn't stand the noise. Was a zombie for a while after both. After that took myself off to a private neuropsychiatrist who instantly said 3 hours a day - didn't do any other tests than balance (just like Barry Willer said!) I have kind of managed since, but doesn't take much to derail me - any kind of stress or pressure and I don't cope very well. On the good days I tend to race around like a lunatic thinking the miracle has occurred - make hay while the sun shines - of course I then pay for it. But there is nothing like the power of positive thinking!!!

Like the Irish saying I have been thinking about all those that are posting - there does seem to be one thing that is in common - besides the headaches etc - everybody seems to be reasonably intelligent - is that why there is such a severe extent of symptons - just food for thought!!

Lynlee

TO , Lynlee*Opps a typo invisible: can not be seen. I can walk and talk and crew bubble gum all at the same time therefore I am not disabled.

*I was hit by a Drunk Driver on my bike, witch is a crime in the US. The lady blew a 2.59 alcohol level at the scene after running a Red light and having a head on collision with the car stop at the light across the street. I T boned her truck in the intersection. Very fortunate that I did not get caught between the two cars, as I would have lost my legs at best and most likely my life.

**All my internal organs where bruised from the impact, so I looked OK on the outside but my insides where black an blue. My lungs where bruised in the accident and I developed Asthma. I've had several asthma attacks in the last 4 years and these attacks put me in the Hospital. You can not breath when your having one of these attacks and anything can set them off. The Asthma is managed by medication, but I have to be careful about being around dust and mildews and several other enviromental elements as they well put me back in the Hospital and that's not a fun place to go. I had an Asthma attack when tring to return to full time work.

*Since my neuropsychologist gave me a heads up at the 6 mouth mark I knew I was going to being set up for failure in regards to rehabilitation and re turning to work full time. I worked union jobs for years and there is no such thing as light duty work in the type of work I did before I was injured. You can either do the work or go home in the real world.

*This is part of the mis information you are told at the rehabilitation clinic. I was given some basic tools to manage the TBI and I use those tools today and they are very useful tools to have, but these basic tools do not make me the competent equipment operator that I was before I was injured.

**Barry Willer is correct in saying the insurance companies, in my case Crime Victims does not want to pay for the rehabilition process for people who have suffered from TBI/PCS as this is a very time consuming process and could take years as we all know or the rest of a persons adult life.

*It's been my experience that the insurance company will give you half of what you need to recover or a lest become functional and then stop before the job is finished, thus setting you up for failure and that's not a nice thing to do to someone who suffers from TBI/PCS, as most of us have enough on our plate just to make it through the day.

**I think knowing that you are going to be setup for failure, before you even start this process is helpful in that you don't feel so disappointed or discouraged when you get blind sided by the people you ask for help. TBI/PCS IS AN INVISABLE DISABILITY.

*You are correct Lynlee the people who post here are very intelligence and they're looking for solutions and answers to over come the the symptom and the causes of TBI/PCS and how that effects the quality of their life.

*Ask small questions. KaizenOnce again Thank you for your post on Berry Willer food for thought still processing that information.

Take care and enjoy your spring. Jeffn

PS Back to waking up at 3 am I don't fight it as this has been going off and on for the last 4 years