you have been discharged
 

Well I was told by the head injury clinic I was discharged and nothing more can be done. Im like what? The md says I should look into social security. Its been nine months. They say im not going to get better. I was finAlly able to get pt for speech. Not sure why I do lose my words but other than that I talk fine. Im so angry and scared. Today is not a good day.

Start going to speech therapy. Speech therapy helped me cognitively a great deal.

Try to remember that recovery according to the neuropsychologist who wrote the tbiguide can occur for up to two years after an injury and you've been healing for nine months.

Do fill out your SSI - if you make a sudden or rapid improvement from this point you can cancel it at any time.

I could not do much of anything nine months after the injury I sustained and now I'm working 20 hours a week. Every brain injury is different, but I believe hope can go a long way towards making a recovery from each one.

Wow, I'm sorry to hear that. If it makes you feel any better, I'm right around the same time frame as you recovery-wise...and I still have a boat load of cognitive troubles. In fact, all my problems are pretty much cognitive. I have not one lasting improvement to show in 9 months of recovery.

I have also been told by a NeuroSurgeon at the ER that my problems were permanent and would not ever get any better.

I have problems losing words, finding words, forming sentences and just knowing what to say. Its like when I go to speak, nothing is there. I'm not quite sure what speech therapy would do for me...but I plan on trying it. I'll try anything at this point.

Are your cognitive problems worse when you first wake up? That's the case with me...I'll wake up and try to talk to someone and nothing comes out right. So I feel like crawling under my sheets and hiding all day. It gets slightly better throughout the day if I keep at it.

Maybe you should start on an SSI application.

Just in case.

Nick

P.S. I'm part of another support group online. I've spoke with people on there who are years into their recovery and still see improvements. So, there is still hope. I just worry about myself because I get worse every few months instead of better. This entire month has been horrible for me...and its the same crap everyday even though I spend most of my day laying in bed.

Hey Nick,

What's the name of the other online support group you're a part of? I would like to check it out. :D

Thanks guys for your input. Nick my symptoms dont have any rhyme or reason they are what they are. I can have a good few days and a horrible week after that. That's one of the problems with me getting a job. I cant go in on only my good days. I'm not sure what the process is because I was telling myself I'm going to get better. I'm not losing my hope but I guess I have to be smart about this process.

crystal and others at this frustrating point in recovery,

Keep in mind that the Concussion Clinic which is just another term for Don't ask questions we can't answer, pay your bill, then go away, is just admitting that there is very little they can do, even from the start.

The speech therapy may help you learn some work-arounds and other techniques for living with your symptoms.

Most of the value of speech therapy is for those who have extended periods of coma and need to reinvigorate the speech pathways. We need to learn/establish new speech pathways or find ways around the log jamb.

There can be many slow improvements. Most improvements come from learning new ways of doing things.

I was discussing this in a PM with Nick (nwsmth). One of the most helpful skills I have learned is to 'stop and think.' This is a form of establishing a cognitive focus. At first, it can take quite some time to get the clearer mind so the thoughts can be processed. As time and practice go by, the stop and think can become an almost automatic system.

The primary focus of 'stop and think' is learning to be deliberate. Pre-morbid, we could multi-task or more accurately, easily switch tasks. Now, we need to shut down any other tasks, both physical and cognitive.

For me, this often includes needing to shut off my environment. Whether it is the TV or radio blaring or someone talking nearby, or a fan blowing too strong, I need to either remove myself from the environment or reduce or stop the sound. If I am navigating for my wife as she drives and I need to read a map, she will need to turn the radio off, maybe turn the AC fan off, and during the worst times, even pull to the side of the road and stop.

So, Stop means everything. Then, as you learn to focus and become deliberate with your thoughts, these other distractions can slowly be reintroduced.

You need to learn to ask other to be quiet so you can think. It is possible, especially with those who have a basic understanding of your needs.

Once everything has been stopped, the word finding has some tricks. I am often successful looking around the room and identifying the different things I see in my mind. It is amazing how access the memory of visual items can open the pathways to the word I am needing.

I think of it as sort of "As I look around, I open the file drawer in my mind to access the index of images. While this file drawer is open and I leaf through the files, I run across a file with the word I need."

Our brain contains a huge database of images, both visual and verbal. Our memory needs to access those images to get the connection to the word or name. When we get stuck with word finding, it is like we can't get the file drawer opened. Using another reason to open the file drawer allows us to watch for other items/words while the drawer is opened.

Another trick I use is a cognitive release system. If I can find the word or name, I let my mind relax as if I am going to change to a different thought. The goal is to release the stuck though, not start a new thought. Often, just as I am finishing letting go of the stuck thought, the word/name will become available.

Maybe this analogy will help. If you have a clogged drain, sometimes, the more water you put in. the stronger the clog becomes. If the water pressure is relaxed, the clog decompresses to allow a slow flow of water.

It is this ability to release the cognitive pressure that helps to find the word/name.

Am I making any sense? If so, click a Thanks or something.

This has been one of the most valuable skills I have developed.

It helps if you can get those around you to relax and be patient while you release the cognitive pressure. The quiet wait can make a big difference.

Those of us who have found a good brain injury support group (BISG) that has group discussion have seen this work.

At last months BISG, we had a new person. He suffered a concussion playing football, then a stroke the next day. He was trying to say something and got stuck with word finding. The group of 10 or 12 sat perfectly quiet for about a minute as he worked his cognitive system to find his words. He eventually broke through and was able to finish his comments without anybody acting as if it was odd.

This same technique works wonders with toddlers and such as they struggle to speak. They often get frustrated and start wining. The solutions is to calm the child and say, "That's OK. Use your words." When they know that you are willing to wait for them to express themselves, the words will come.

We just have older brains that are still needing to learn to find words, etc.

There are many other work-arounds, tricks and accommodations that allow us to overcome many of our limitations.

Being patient to recognize the individual struggles is the start at identifying the new skills we need to learn.

My best to you all.

btw, Get the SSDI application going. The process starts with a SSI application which is a quick process then follows with the SS Disability Insurance/Income application. The SSI portion is an emergency welfare like income benefit for those with no assets to liquidate while waiting for their SSDI application to get processed.

I felt that the "Thanks" button was just not enough in this situation.

So, thank you Mark. I think that is the greatest advice anybody could ever receive. I second everything you've said here.

BTW, the "Stop and think" thing Mark taught me has become a daily part of my life...and it has improved the quality of my life.

Nick

I agree Nick. Thank you Mark. Your help has been so appreciated. You are so kind to give us such valueable advise. Have you thought of writing your guide to surviving a tbi?

Ditto. Mark, I can relate to so much of what you wrote here. In fact, a big thanks to you for responding to some of my posts over a year ago, with similar information.

It takes time to make these things into a regular "practice". But stopping the noise and clutter is an absolute requirement!

I also found that I took quite a while to go through the "acceptance" stage. Not that I have given up hope, but I don't fight my symptoms and my situation as much any more. The more you fight it, the worse your symptoms get. Accepting your situation allows you to let go a little and focus on your day to day well-being. As my doc says to me every month - "baby steps". And man, what an understatement that is.

Mark, I also like how you use the term, our "pre-morbid" selves. We really do have to let go of our old selves and our old abilities like multi-tasking. My goal as I am slowly trying to return to work is to learn a new way of working. It's highly unlikely that I will be the leader and multi-tasker that I once was. But that is OK. My main goal now is to "feel well". If that means we lose our house because I can't retain my income, then so be it. I certainly fear that - but not as much as I fear not feeling well enough to enjoy life.

Many thanks to all who post here. I'm not good at reading all the posts, but those I do have proven to be most helpful.

Thanks!

X-Soccergal

I agree Nick. Thank you Mark. Your help has been so appreciated. You are so kind to give us such valueable advise. Have you thought of writing your guide to surviving a tbi?

Your comment regarding pre-morbid is interesting. Most people think it means before death but in medical terms, it means before disease.

I have read enough medical records and journal articles over the years to get to where using medical terms are easiest. If I wanted to use a different word than the one that came to mind first, I would have to Stop and think.

I guess I could have said pre-injury or pre-concussion. Premorbid was just the word that popped first.

I have learned so much just trying to understand medical journal articles and my own medical records. The necessity of understanding them so I could file a Work Comp and SSDI claim forced me to find ways to make my brain work around the blockages.

I get a great sense of accomplishment when I find a new work-around past a road block that has stymied me for months.

Have you guys seen my comment about "Is the glass half full or half empty?"

For those of us needing to reinvent ourselves, this is when we need to decide to glass is too big and we should choose a smaller glass that we can easily fill to the brim and carry throughout life.

A similar concept is how I learned to let go of my perfectionism. I learned that it is all about perspective. I used to do specialty kitchen and bath remodeling. I would see all of my errors but almost everybody else would see my work as near perfect. It took a long time to be able to accept their view as the most valid one. I'd get a bunch of referral business with glowing reports of the work I did. I had to learn to accept the customers' praise.

We need to learn to accept our own praise when we get something done that we could not do at an earlier attempt.

My best to you all.

Oops posted twice hard to.do on.these little phones. Lol

I'm a year post-concussion this Sunday and still improving, in fact faster than ever.

I recently read about a study on long term stroke patients, one of whom saw improvements from an intervention 50 years after their stroke. Stroke patients are often told similar things to us in terms of "after X months you won't get better anymore", but the brain goes on being plastic and can learn new things throughout life even after an injury.

So ignore these people who are trying to sound like they know more than they do and keep on going. There's more useful advice on this forum than they could give you anyway.

OK Crystal, I was just reading more about PCS et al. and I came across this quote from a decent medical text and immediately thought of you!

"Patients may recover suddenly after a long time without much improvement."

Woot! ;)

You can see that it came from this text: Komaroff A, Harvard University Harvard Business School (1999). The Harvard Medical School Family Health Guide. New York: Simon & Schuster, 359. ISBN 0-684-84703-5.

Here: http://www.wikidoc.org/index.php/Pos...-Komaroff99-47

I have more hope myself for a spontaneous full recovery!

Remember: I wasn't even able to work at all for a year after the accident I was in, I started at 12 hours a week and now I'm up to 20 hours a week! :D

Slow and steady wins this race.