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Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).

Lumosity

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Unread 05-25-2011, 12:16 PM   #1
EsthersDoll
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Hi!

I just wanted everyone here to know that I've been using a program called lumosity online to help me recover from mTBI and PCS.

*edit*

It has courses that have been developed by neuroscientists. I think it's been helping me and I thought someone here might benefit from it as well. (Especially since many of us are not getting a lot of cognitive therapy from our HMO's.)

It costs money to subscribe, but you can find coupon codes online for a good discount. *edit*

Subscriptions to it are even given out to soldiers who are diagnosed with mTBI and PTSD from the VA, so someone who is an expert in this area thinks it can do some good.

I have had PTSD all my life due to trauma I experienced during my childhood and I've been diagnosed with ADHD as well which may have exacerbated the mTBI... I don't know and I've never really thought either diagnosis was a huge problem for me anyway - just something to consider.

Anyway, lumosity has programs designed for all of these neurological issues.

Much Luck!!




My long story short:
I have been recovering from a mtbi that I got in July '10 which became complicated by iicp (hydrocephalus) that was getting worse for six months before the doctors figured out what was wrong with me and they speculate may have caused additional brain damage. (I degraded to a point where I couldn't walk unassisted and was in severe pain for months.) I received a spinal tap in Jan to relive the pressure and I've been healing slowly ever since. At this point, I'm not well enough to drive or work yet, but hopeful that time will come.

Last edited by Chemar; 05-25-2011 at 12:22 PM. Reason: NeuroTalk guidelines
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BeccaP (05-25-2011)
Unread 05-25-2011, 10:05 PM   #2
Mark in Idaho
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I have followed Lumosity for quite some time and the other company Posit Science. In fact, I have the complete Posit Science set of exercises.

Neither have been developed for or studied as a treatment for mTBI or PCS. They are part of the Brain Training industry that is focused on exploiting the population of people who are afraid of developing Alzheimer's Disease. They have value at improving some cognitive and visual skills but there is no evidence they help with mTBI or PCS.

As one who has relearned cognitive skills lost to PCS, I have decades of experience. Sudoku will be as effective at helping with the cognitive skills as it focuses on multiple step process thinking.

BTW. I score very high on both the Lumosity and Posit Science tasks but still have very little immediate and short term auditory (verbal) and visual memory functions.

I think the value of both systems is in developing skills that have been under-developed. These skills can then be used to work-around and accommodate the persistent PCS symptoms. Learning better memory skills and visual skills can go a long way to over-coming the symptoms of PCS.

By better memory skills, I mean better ways of looking at things that need to be memorized. For example, I textualize and/or verbalize visual memories so I can retain them. When driving and at a stop sign, I need to look to the left then repeat, "No traffic on the left" while I look to the right. My visual memory will not remember if there was any traffic on the left so this trick allows me to remember by a different means.

The Posit Science program is problematic in that it does not accommodate persons who struggle with visual clutter. I have tried to suggest they improve their user interface but to no avail.

Both are missing a scheduling system to remind the person to do the exercises each day. It is like buying a membership at a health club. As long as your dues are paid, they don't care if you show up or not.

If you have the funds to pay for these systems without sacrificing other needs, there is no reason to not try them. Just don't expect miracles.

fyi, The Alzheimer's reason is not entirely valid. Such exercises may postpone the onset of AD but not by much. In fact, some researchers think they just delay the slow onset to a later quick onset. An example would be: Rather than spending five years slowly developing the symptoms of AD, the subject has two years with less symptoms then a quick decline over next the three years. The end date is likely unchanged. The current AD meds do the same. I lost my father and my wife's father to AD/dementia. Those with PCS are up to 18 times more likley to develop a AD like dementia.

My best to you all.
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Mark in Idaho
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59 years old, retired due to disability, married 34 years, father of three, grandfather of four, Suffered a serious concussion at 10 years old (1965) stopped most driving after concussion at 46 years old (2001), Post Concussion Syndrome/Multiple Concussion/Impact Syndrome with PTSD, immediate/short term visual and auditory memory problems, slowed processing speed, visual/auditory processing difficulties, insomnia, absence seizures, OCD, 14 concussions since first concussion at 8 years old, Taking paroxetine for 14 years and gabapentin for 12 years. Added L-Tryptophan and stopped paroxetine after 3 months of tapering. I currently take 500 mgs of L-Tryptophan AM, 500 mgs noon, and 500 mgs PM.


As of Nov 15th, Due to high stress issues resulting in PTSD, docs put me on 3 meds. Clonazepam but only for 30 days ) .125 mgs twice daily (Doc presc. .25 mgs 2x daily but half a tablet is good) , citalopram (Celexa), an SSRI , and olanzapine (Zyprexa), an atypical anti-psychotic that usually causes weight gain before bed. I lost over 30 pounds since mid July. It just stopped the weight loss. Took me off the gabapentin. I am feeling better than I have in years.

This great feeling only lasted a month. Back to the same old PCS doldrums.

May 2014, I am off the olanzapine due to a 6 fold price increase. Back on 600 mgs of gabapentin before bed.

I am also taking L-Theanine to help with GABA regulation


"Be Still and Know That I am God" Psalm 46:10
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Unread 05-29-2011, 06:01 PM   #3
jcastro
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Mark,
On one hand I agree with you. Lumosity and PositScience are not designed specifically for those with PCS or mild TBI. They are designed for the aging population and they do have research to support how the games function.

Having said that, playing the games won't necessarily help you generalize to everyday skills. Getting better at a memory game online probably doesn't mean you'll be able to go to the grocery store without your grocery list and remember everything you need.

I recommend using Lumosity and PositScience as a way to strengthen your general cognitive abilities and if anything, give you structured activities to participate in while your brain is healing.

So many of my patients who haven't gone back to work are bored to tears at home. Lumosity and Posit Science may not cure your concussion symptoms, but they are useful strengthening general cognitive skills and for passing the time in a constructive way.

Jena

Last edited by Chemar; 05-29-2011 at 06:08 PM. Reason: linking guidelines
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Unread 06-04-2011, 02:43 PM   #4
EsthersDoll
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And maybe Lumosity didn't remind you to play the games the last time you looked into it, but they do send me a daily reminder in my email every day!

A user can have them send you an automated message/reminder by checking that option in their account settings.

That setting has helped me a great deal!! Otherwise, I probably wouldn't remember to play the games within.

The games may or not be proven to help with PCS, but I distinctly notice a decline in my scores when I'm tired or having a bad cognitive day. And I do believe there has been some exceptional improvement relieving my own symptoms since I started playing them.

And I'm reading a book written by a Dr. who recommends cognitive therapy as a means to help people recover from brain injuries who did so herself after she was diagnosed with PCS named Claudia Osborn. The book is called Over My Head. Actually, I find the book itself therapeutic because she totally understands first hand what it's like to recover from a brain injury and that's what the book is about.

Anyway, my insurance group has been giving me the runaround about neuropsychological testing that all the doctors have recommended for me which will point out which therapies I need to recover and I haven't been to work in about ten months - I want to return to work and I want to have something to do, and I do believe these games are at least providing me with something more productive to do than what I was doing before I found them.

But I know what you mean about a surface being too busy to work with; I decided not to purchase a brain exercises book that I saw at Barnes and Noble for that very reason! It was like MTV on paper - I totally can't handle that kind of visual stimulation these days!
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Unread 06-04-2011, 08:55 PM   #5
Mark in Idaho
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I looked into Claudia Osborn. She has a good story. The only problem with it is her injury was much more than a concussion. Her closed head TBI has a much different recovery since it starts at a much lower level of function. I find these people very helpful as an incentive to get on with life.

I meet with a group each month at our Brain Injury Support Group. Ninety percent of the group suffered coma inducing injuries. We have many symptoms that overlap but they started from a much worse condition. Many TBI patients are considered recovered or rehabilitated when they get to the level of common PCS symptoms.

It is worthwhile to read about others who have similar struggles. It helps us realize that we are not alone.

I have done Lumosity with their free trial and their other free promotions plus they have a number of simpler free exercises. I have score very high even though I have persistent memory and other cognitive problems. I have score just as high with the Posit Science set that I have.

Much of the improvement is just simple brain development, not PCS recovery. So, yes, they are both worthwhile activities. Just don't count on these systems to help you recover from your PCS. They may help you learn some work-arounds and other accommodations. These are important skills to have.

Just remember. There is a lot of therapy that is recommended because there is money to be made with the therapy. It also gives the doctor a way to say he is helping when he refers you to a Occupational or other therapist.

Just don't break your bank thinking the therapy is a cure all. It will get you out of the house and interacting with someone on a regular basis which is very worthwhile. But, at what cost.
__________________
Mark in Idaho
.


59 years old, retired due to disability, married 34 years, father of three, grandfather of four, Suffered a serious concussion at 10 years old (1965) stopped most driving after concussion at 46 years old (2001), Post Concussion Syndrome/Multiple Concussion/Impact Syndrome with PTSD, immediate/short term visual and auditory memory problems, slowed processing speed, visual/auditory processing difficulties, insomnia, absence seizures, OCD, 14 concussions since first concussion at 8 years old, Taking paroxetine for 14 years and gabapentin for 12 years. Added L-Tryptophan and stopped paroxetine after 3 months of tapering. I currently take 500 mgs of L-Tryptophan AM, 500 mgs noon, and 500 mgs PM.


As of Nov 15th, Due to high stress issues resulting in PTSD, docs put me on 3 meds. Clonazepam but only for 30 days ) .125 mgs twice daily (Doc presc. .25 mgs 2x daily but half a tablet is good) , citalopram (Celexa), an SSRI , and olanzapine (Zyprexa), an atypical anti-psychotic that usually causes weight gain before bed. I lost over 30 pounds since mid July. It just stopped the weight loss. Took me off the gabapentin. I am feeling better than I have in years.

This great feeling only lasted a month. Back to the same old PCS doldrums.

May 2014, I am off the olanzapine due to a 6 fold price increase. Back on 600 mgs of gabapentin before bed.

I am also taking L-Theanine to help with GABA regulation


"Be Still and Know That I am God" Psalm 46:10
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