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-   -   brain just isn't the same?! (https://www.neurotalk.org/traumatic-brain-injury-and-post-concussion-syndrome/182982-brain-isnt.html)

cyclecrash 01-26-2013 11:49 AM

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

MiaVita2012 01-26-2013 12:15 PM

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?

cyclecrash 01-26-2013 12:25 PM

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.

MiaVita2012 01-26-2013 12:49 PM

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
Quote:

Originally Posted by cyclecrash (Post 951137)
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.


MsRriO 01-26-2013 02:31 PM

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.

Mokey 01-26-2013 11:42 PM

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!

cyclecrash 01-26-2013 11:54 PM

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

Mark in Idaho 01-27-2013 12:51 AM

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.

Mokey 01-27-2013 01:17 AM

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!

SillyRugger 01-27-2013 03:00 AM

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.


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