Monday, August 18, 2008

That Sun!

Alright, Tough Boy:

1) Never leave home without your sunglasses!

2) Lost your glasses? A Red Sox baseball hat can help, too. Ok... so I'm a sox fan!

3) Get a significant amount of rest for 2-3 days prior to spending a day in the sun.

4) Worn out from being outside?? Allow yourself to rest.

5) Pay attention to what stores you "loose your brain" in. It could be their lighting!

6) Online surfing? Dim the monitor; avoid white backgrounds; find what colors you tolerate best

7) Colored Eyeglasses - who knew?!

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How ironic to name a blog "Tough Boy" and make it entirely pink! Well maybe because I'm a girl?? Nope.

Answer: It's easier for me to read.

I met with a psychologist I knew from my hometown a few months ago. Although he was unable to take me as a patient, he spent over an hour giving me a ton of information. Little did I know he had twenty-plus years of experience diagnosing, treating and rummaging through research surrounding head injuries. While getting lost in circles for a long time not understanding a lot of things, this guy was right under my nose with a plethora of knowledge!! Some of the random things he told me I might have forgotten and I wasn't able to look up much of the stuff I remembered. But there was one thing I did find.

He told me someone had found that people with head/brain injuries/whip lash were found to not tolerate light as well. Well I knew that from experience... But then he told me there was research out there showing this group of individuals actually struggle to process specific wavelengths of light often emitted from certain fluorescent lights, the sun, etc. And they developed certain tinted/colored eyeglasses to help. My words might not be his exactly but Google helped me find the Irlen Institute.

This article presents research specifically seen with TBI. I wish they posted a date it was conducted, or a link to a legit article! Legit research or not, the following statement I very much believe - just from talking to people, who know people who have struggled in similar situations. I also believe it from my own experience regulating the amount of sun/light I see each week, exposure to retail stores with fluorescent lights, and from what websites I visit most when I'm out of it. All these, and more, contribute to how comfortable I am in the moment, day and throughout the week.

Dr. Tosta stated in her research:

It appeared that these individuals were so overwhelmed by the changes to their life that they had little awareness of the severity of the symptoms contributing to their inability to function.

Other articles and reading are available throughout the sight. There's information (that I haven't quite read) including how the use of these glasses can benefit other problems including migraines, asperger's, and ADHD. And if I haven't said it already- much of the issues seen in post-concussion are very close to symptoms seen in ADHD (and they are often misdiagnosed on both sides... I should have saved that article on it, darn).


So, I spend a lot of time inside with the lights out and my dark shades down. I try not to go outside in the sun more than one day a week, and never without my sunglasses. I go for most of my walks or trips to the grocery store after the sun has set (NOT the best thing for your circadian rhythm, however). I only go to retail stores in the quiet hours, on days I'm able to accomplish something - like filling a prescription. If I'm going to wait, I'll usually find a less-abraisive store to browse nearby if the lights are too much.



When I tried reading research articles again, not only was the medical terminology not processing very efficiently, but I was greatly concerned/frustrated by the way my eyes were picking up words. There was a bright light behind each word as it seemed raised from the rest; to move to the next word I had to actively 'drop' one and 'pick up' the following. Here's a picture I just came across... not exactly what it was like... but close.










Were the white pages making it difficult?? I'm not sure and still don't know, but I do know that most things online are easier for me to read when they're not on white backgrounds. Brighter colors (whites, neons) are more difficult; dark ones are ok, but white letters are hard to read. Yellow words on dark blue is tolerable, as well as black on pastel backgrounds. Even though the background color could be subtle, it's amazing how much it can help.

And thus - I hope you enjoy my pink page!!

3 comments:

Anonymous said...

I wanted to respond to your mention about research on the Irlen lenses website:

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Dr. Tosta stated in her research:
It appeared that these individuals were so overwhelmed by the changes to their life that they had little awareness of the severity of the symptoms contributing to their inability to function.
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While it may be true that the overwhelm of dealing with TBI prevents us from identifying the challenges, there's another aspect that lots of people don't mention: a condition called “anosognosia” — basically, Latin for “not knowing there’s a problem”.

It’s a very interesting phenomenon that’s common in stroke survivors and severe TBI survivors, but in my case — a series of mild TBI’s — I can definitely tell it’s caused problems. You literally do not know there’s a problem with your processing. Other people can tell, but you can’t. Some people don’t even realize their one side is paralyzed. You can read more about it at http://discovermagazine.com/1995/may/thebrainthatmisp502 which is an article I really enjoyed.

So, while overwhelm may be part of it, there's a cognitive aspect, as well. Dr. George Prigatano has written a great deal about this phenomenon, and Google Books has a pretty complete version of a book he contributed to: "Awareness of Deficit After Brain Injury" By George P. Prigatano, Daniel L. Schacter -- you can read most of it at http://books.google.com/books?id=xze89PCLaWMC&printsec=frontcover&dq=Awareness+of+Deficit+After+Brain+Injury&client=firefox-a&sig=ACfU3U0fGDNZyDxdkuBwr4jzLwJ8_MoyGQ

It's some of my favorite reading, these days. I feel a lot less insane/deficient/incapable, when I realize that the problem is not with ME -- it's with my brain ;)

Anonymous said...

Hi. Just wondering if you ended up trying the Irlen lenses. Our 5 yr. old daughter is 5 months post concussion, has been diagnosed with post concussion syndrome and definitely has light sensitivity. She just picked out a new pair of sunglasses on her own initiative (and it's fall now). Being outside on very sunny days leads to headaches, dizziness, agitation, etc. We'll try anything that has promise to help her! Thanks so much for your website and all your advise, and all the best to you in coping and recovering.

Maria

NEdream26 said...

Thanks Maria, and so sorry to hear about your daughter's struggles.

I haven't tried the lenses. I know insurance doesn't cover them - ever. I don't know how much they cost, but I've heard they're extremely expensive. Will they work? - I've heard accounts from a few people, and have experience using sunglasses inside (and all the time) and I believe they would have merit.

I spent some time writing about a ton of pointers for you and your daughter - I hope something might help. I hope she finds some comfort sooner than later! Best of luck for her recovery.

Also, thanks for the well wishes :) It's more appreciated than you can imagine!

.PharmD.