brain just isn't the same?!
 

My neuro psych wants to do very expensive testing on me. ($2000+) and I have no coverage. She is hoping my LTD will pay for it because she believes it is beneficial to show what I need to work on in order to get back to work someday.

I told her I didn't think I was doing too badly cognitively because I don't seem to have the obvious memory problems that a lot of you talk about. She told me I probably was not aware of how many issues I am really having because I am not trying to accomplish anything but rest right now.

The two-three hours that it takes me to make supper should have been a clue to me! She suggested I go on Lumosity and try out their games. Wow what a frustrating, depressing wake up call! I have always been in the top 10% of all my classes and on any types of tests, etc.

I thought I was doing not too badly on the games and was grateful I was able to do them at all but when I saw my scores compared to others my own age... I wanted to cry. When I was doing the games I had actually thought... see... no problems.... I am in the bottom 25% and on speed I am actually below 14%. I sent her the results and she said it was just as she suspected.

I thought that as I got used to the games, where the keys are etc., I would get better but after a week I'm still doing really poorly. I am at about 7 months now since my accident. Will this stuff come back? I know that I was told I would have to learn a new way of thinking or a new "norm" but I thought I was doing better than I am.

Has anyone else tried Lumosity and had any success using it as a learning aid? They are doing studies with it right now with Veterans with tbi's and it will be interesting to see what the results are.

On a side good note... I started vestibular therapy this week and have not had the big increase in symptoms that they were worried about. I'm hoping to get my dizziness under control so I can start walking again.

Oh and I also have an appointment at the end of February to see a concussion specialist neurologist at a sports clinic. It's "return to play" focused but in order for her to return me to play she has to fix me a bit first right! Still no appointment date to see the neuro ophthalmologist.

Wishing you all a good day,
CC

CC,
I am doing Luminosity...It shows me my progress and my weak spots.If you don't mind me asking have you seen a psychiatrist?If so what meds are you currently on?

I am seeing a neuro psychologist not a psyciatrist. Up here its almost impossible to see a psyciatrist unless you're suicidal. I'm only on 10 mg amitriptyline and extra strength tylenol etc for pain.

Sorry to hear that!That is a catch22!I wrote many papers on the Canadian Medical....goes to show where my mind is....still in rehab obviously lol

Argh, more Canadian woes
 

Wanted to join up to Luminosity when I read this thread.

I don't have a PC, I use an iPad only because my brain seems to handle it better. My old PC died just before Christmas.

So, none of the stuff on the site works on an iPad. It says download the app.

So I go to download the app and it says not available in Canada.

Pretty much ready to throw a hissy fit. :hissyfit:

Sorry to hear of your woes also, CC.

The Brain trauma clinic at St Michaels hospital in Toronto has some good people, and have a brain trauma psychiatrist as part of their team. They also have an ENT who specialises in trauma (stroke, mtbi). The waiting list for the pyschiatrist is not that long. If you don't feel like there is a good team in Ottawa, why not get your GP to send you to St Michaels? I went from out of province. Good luck!

Hi Mokey,
Thanks for the tip about Toronto! I'm actually thrilled with my neuro psychologist although a psychiatrist would be free :)

I'm seeing a woman in T.O. that I think used to be part of that team you are talking about. She will refer me to anyone else she thinks I need to see. Travelling, or even leaving the house, makes all my symptoms drastically worse and is not something I want to do unless I have to and not too often!

It all is getting really expensive too.

CC

Regarding Lumosity.

The improvements one attains doing the program are not necessarily due to brain healing. Many of them are due to expanding the skills sets from previous low levels. It is like learning speed reading. You can be a competent reader but a speed reading course can develop undeveloped reading skills. Just like learning new balance skills or typing skills. Many have grossly under-developed observation skills. These exercises can cause great improvements.

It is only when the metrics are normed for age, education, etc. that they start to show improvements of skills lost due to injury.

Lumosity is just starting a research study with the VA regarding brain injury subjects.

This does not mean Lumosity is not worth the expense and effort. You may be able to develop skills that can help you work around skills that have been lost due to injury. Just be cautious you don't cause fatigue thus slowing organic recovery.

I know what you mean' Cycle...! $$$$$

It is all of the non md visits....vestibular, optometrist, (8 pairs of glasses in one year!!) accupuncuture, neuro psych, physio, chiro, plus the cost of mistakes I attribute to brain injury....like two blackberrys in cups of coffee, mlosing expense receipts, losing glasses, etc.

It is important you know you will feel better....it is a very long horrible journey so just take it day by day. I had an awful day today...after a pretty active week where I had glimpses of the old me in action. But I need to look long term and if I do I see progress. It requires us to dig deep inside ourselves to find strength to keep on breathing. Hour by hour! So hang in there and keep a bit of hope!

I don't pay for lumosity, but I have been using it since the new year. I don't know if it's working, as I'm feeling mostly better (as least cognitively), but I do use it to gauge my fatigue levels in the morning. I tend to do a lot better on the games after a cup of coffee.

Thanks for all the comments.

Mark, lumosity does have you enter your age and education. I think that is what upset me the most is that compared to other people my age I am now below the 25'th percentile overall and for speed I am below 14! I wish I had done it before the accident so I could compare but I know it would not be this low. I agree that any improvement doesn't mean my brain is healing but maybe learning new ways to do things. Still improvement!

StupidRugger, are you back doing cognitive things that you were doing before the accident (work, school) and not noticing any problems? Are you where you think you would be compared to others your own age in Lumosity? What surprised me the most is that I thought I was doing well cognitively too and boy was I surprised when I started trying to do mental tasks and learned that I'm nowhere near where I was before.

I re-read the title I gave this thread and it's really bad... I think I just wanted to see if other people had somehow discovered that they have problems that they didn't know they had. It seems so strange to me that I can not be aware of things I'm having issues with. Makes sense though that the brain is injured.. it may not know it's injured.

My job is fast paced with short deadlines and lots of multi-tasking required. There is lots of noise and bad lights. Many interruptions. How will I ever get back to that?

For some reason I woke up feeling anxious today and can't seem to shake it. o.k. no more worrying about work at the moment. My current task is to relax and focus on getting better one day at a time.

Thanks for listening to me rant. I hope you are having a calm day.
CC

< Lumosity? What surprised me the most is that I thought I was doing well cognitively too and boy was I surprised when I started trying to do mental tasks and learned that I'm nowhere near where I was before. > What is Lumosity?

Just found this group. Slow speed motorcycle accident. Decided not to wear my skid lid that day coming home. Hit my head and ended up ICU out for a few hours. Gold Wing was totaled. Checked myself out early and got staff to take me home, very confused. Started cognitive rehab shortly after and the testing showed me what I was missing and the tech gave me work a rounds which were great. Otherwise how do you know~!! She was actually a speech therapist at Tampa General Hospital. They told me no improvement after a year. Now 3 years and still see some improvements once in a while. Still cannot enjoy a novel and I was a book worm. Short term memory problems makes it not fun anymore. I think my technical work and being on the computer so much helps. I used to play games and cards but don't enjoy anymore.. again short term memory problems. I now realize what a good brain I had as seem to be reminding staff all the time. If I had only had my helmet on, I would have walked away from the accident. Florida passed a no helmet law and its amazing to see how many NEVER wear one. A group called ABATE lobbied to change the law. We do stupid things at times and regret for a lifetime.:(

tampasailor,

Welcome to NeuroTalk. At least you did not become an organ donor. But a Gold Wing is not quite a donor cycle.

The 'no improvements after 1 year' indicates that they are way out of date in their education about mTBI.

The reading things may be that you can not follow the multidimensional plot lines and keep track of all of the characters. I can't read fiction at all. I had to cancel some magazines because the editors started gearing the articles for a feminine reader. Too much complexity in descriptions causes my brain to go on 'pause.'

I do fine with technical reading because the different pieces have a logical pattern they fit in. I bet that if you consider these things, you will understand what your specific limits are.

Please feel free to introduce yourself and tell us about your current struggles. There are lots of good people here. You can start your own thread if you have some questions to ask. Just click on "Traumatic Brain Injury and Post Concussion Syndrome" and it will take you to the index page where you can "Post New Thread"

My best to you.

Hi Tampasailor!
Lumosity is a website that has "games" that you use to improve cognitive abilities like memory etc. I wouldn't recommend them for anyone still suffering acute PCS symptoms but once you get to the stage where you want to try to improve your abilities it's worth trying.

From the lumosity website:

You have the power to improve your brain

Scientists once believed that mental ability was fixed after childhood. But over the last few decades, neuroscientists have discovered that adults’ brains are constantly changing – growing new neurons and connections – in a process known as neuroplasticity. Lumosity takes advantage of the brain’s innate neuroplasticity to help shape it into a more effective, powerful organ.

Instead of teaching specific skills that may only be useful in specific areas, Lumosity targets core cognitive processes that underlie performance in many different areas. These processes include memory, attention and other abilities that are critical in the real world.