TBI & Cognitive disabilities
 

TBI can result in many distressing problems. for me, most challenging are "cognitive disabilities" -- persiting problems w/ thinking, reasoning, information processing. and more brain [dys]functions.

Memory, the most common cognitive impairment, was addressed in previous thread --w/ great suggestions

How do others deal w/ other cognitve & related problems,,,,

"Executive functions"--organizing, planning, problem solving, decision making

Attention, Concentration- easily confused & distracted

Language & communication

Emotional & Behavioral

Hypersensitivity- to light; sounds/noise; smells, and other stimualtion


perhaps too much, many issues to address in one post... but all are presenting problems I don't know how to cope with....very well

suggestion, insights, advice
on any level, area appreciated...
as well as other's experiences

if this too vague will try to elaborate or clarify....
hard to believe how much time & energy & more to get this Posted

Noise
 

A week or so ago I purchased "a little black box". It is a noise cancellation device and you wear it as ear phones either small or large and it is connected to this small black box - around the size of say an ipod. You can use it on its own or even connect your ipod to it or the airline sound system.

It is amazing, I have only used it in the car so far and it cuts out all the back ground noise - you can still hear a person talking or on planes you would still hear announcements or hear films - but none of that horrid back ground noise. I haven't tried it in a mall yet but I do know that it will cut out that horrible back ground buzz which I can not tolerate.

They are actually made in NZ I paid NZ$179.00 which would be about US$120.00.

The best thing I have bought.

The website is www.blackboxonline.com

Thoroughly recommended.

Lynlee

PS - not been around as over did the walking - was given a pedometer and went crazy and brought back all the PCS symptons - bad headaches, vomitting major weight loss. The latter being the plus side of things!

My Paxil and Clonezapam seem to help me on these issues.
Keeping a pad of paper and pen on me to grab "fleeting thoughts" before they disappear helps, too. And a journal.

And 40mg of Whycan'tyoualljustbequietforaminute three times a day.

Yeah, I take that too. Along with my clonazepam for the last 17 years.

Executive function is the worst for me. So when I work, I work alone.

Light: Family knows to warn me before turning on a bright light. If they forget, they remember rather quickly. Nobody wants to see my inner beast...including me.

Bottom line: I take my meds, place myself in a controlled environment as much as possible, save my strength for the unexpected.

Time and middle age is teaching me patience. When there is some kinda uproar going on, I know it will pass and I can return to my quiet ground, resume breathing normally, and regroup for the next round.

thanks--for replys & suggestions.
Neuro just Rx'd- Clonazepam--for sleep problems & neuro Sx/pain. 'He blames chronic pain disorders for many of problems cited --that I blame TBI. Perhaps both are so and this new med & some others he prescribed will help--pain and Cognitive & related dysfunctions.

it would be nice to be inor create a more "controlled" environment --I've been living w/ elder parents -w/ hearing problems (and terminal illnesses) Even tho I've been primary caregiver, often had to remove self from blarring Tv. --go to my room close door; call on intercom if needed. (my dad understands that I am very sensitive to noise, light, etc. and other problems & I've tried to be understanding of his conditions, etc.)
Hopefully that TV noise scenario will change--father finally agreed to get hearing aid. should be ready in 4 wks. still many other challenges & issues.. w/ care giving & other responsibilites..... these Stressors -exacerbate & trigger TBI/PCS & other med problems.... too much to get into .... so many things I don't know how or am not coping with very well....
appreciate support, suggestions extended....

Lynnlee... thanks for noise box suggestions-glad to hear helps you.
Sorry to hear of your setbacks--- another lesson learned hard way??
I've also had recurance of nausea and severe headaches/pains.
Hope soon improves...

wishing all BEST

Hi Pono
 

Hi Pono Looks like you have a lot of the same symptoms on your list as I have on mine.

One thing I did with my list is I took the time to write up my own assessment of the symptoms I'm dealing with and a list of sub categories under each major symptom witch is 3 pages. This has help me a great deal when talking to Dr's. and others. I just hand them the assessment and let them read it. Presenting information in this way sames me a great deal of time and stress.

Example: I suffer from migraine headaches and have to use IMITREX to manage these headache and I may have to the rest of my life that's OK.

What I've seen in my assessment on migraines is that stress is one of the contributing factors in causing the migraines, so I try to manage the stress weather the stress is internal or external. I simply have to manage stress differently then I did before I was in juried.

2. I use 3x5 note cards to write thing down on this has helped a great deal and I use it for short term memory issues and problem solving. If I have a problem I write it down on a 3x5 card and let my sub conscious mind work on it.

3. I use KAIZEN:1. Think small thoughts 2. Solve small problems 3. Ask small questions 4. Take small actions.

4. It took me 3.5 years to work through the block that I am disabled and the person I was before the TBI may not be coming back. That person has not come back to date so I spend my time and mental energy of learning to live life the way I am today,and today that is OK because I have peace.

5. Learning to manage life differently.

Good to see you writing Pono it helps, and it helps to write about what's happening with people who suffer from TBI/PCS.

Take Care Jeff

Lynlee little back box now that sounds like a good Idea, kind of like meditation I know what you mean about the noise and light issues. The noise still freak me out when I get to tried or over do it. Good to read your losing some weight that cool.

Lynlee have you done anymore research on FLYING ?

Take Care Jeffn

what is this
 

"whycantyouallbequiet" etc that you have mentioned? I have never heard of it.

Jeffn - re flying - no not done anything else yet - the little black box will help immensely - I did like your idea about posting my luggage - then I could just carry on my basics - brilliant.

I have a new challenge, had to have a doctor out a couple of nights ago - stemetil and voltaren injections in my you know where. Now just been back to emergency as my backside is that painful I can hardly walk, sit or lie down. Suspect abcess or muscle damaged and to have an ultra sound on Monday if no better - groan. Just don't believe it. My 3 months off work have been spent with feeling so awful! Had enough and don't really want to lose any more weight with this. Also was given an inhaler to try and help stop coughing I sound like a 52 year old smoker - even though I have never smoked.

Had a sleeping pill last night and managed 6 hours sleep........... was lovely -first time since I can remember!!!! Sad eh - best thing in life a good nights sleep!!!!!!!

My rocks and gnomes are going well Jeffn

Lynlee

Hi Lucy
 

Hi Lynlee good to see you have your sense of Humor that's good.

I like growing rocks as they have a different since of time then people and sometime there even nicer.

I need to take a trip down south on the AIR PLANE so maybe the little black box would help with the noise stress, more concerned with the head stress and air quality.

Maybe I should do a test run and see how it goes. Any way FLYING is just one of those issue I'm going to have to deal with. I'll get over it.

Take Care Lynlee it's good to here you have not bumped your head Jeffn:)

I can't help but chime in here. You've probably seen my posts about my 10-year old son who suffered from PCS for about 10 weeks or so and is now back to his normal life. Thankfully, he has fully recovered and the worst that has happened is that #1 concussion that will hang over his head (and mine) for the rest of his life, or until his next one. I know how lucky we are. As far as I can tell, the nature of his injury, his age, his history of no previous medical issues, and the fact that we aggressively sought out knowledgeable professionals to treat him were all important in the positive outcome for him.

I just want to tell you all to not give up. It's an awful cross to bear, living with a chronic condition such as this. My son's neurosurgeon, Dr. Cantu (Emerson Hospital, MA), told us that more research has been done on the brain in the last 10 years than has been done in the last century. Half the battle is for the scientists to find the answers and the other half is finding the practioners that can apply those answers to your life.

You all are determined, courageous, and inspiring people...just don't forget that!

Sandy

Hello, pono -

I know this reply is to an old, old posting. However, I simply had to recommend to your attention, regarding your Dad (May he be Well and Fine) and the loud tv disturbance --- even better than hearing aids (and *much* less costly) are the audiologist-recommended "TV EARS" (brand name) --- approx. $99 at e.g. Radio Shack.

The audiologist recommended to spend no less than ~$100 for the best sound quality/accuity for the elder folks who have significant hearing loss. They are *great* and work well for the 87 y.o. elder in my life.

How's it going? Sincerely, Theta Z.