Is it TBI, chronic illness, cognitive disorders, dementia or Alzheimer’s? Part 1 of 2

14 Oct

What’s the difference between brain dysfunction such as dementia and other progressive cognitive disorders and TBI or other chronic illnesses?

Survivors of TBI and chronic illness rarely are out in public when symptoms are exacerbated.  However, simply because the unpredictability of these symptoms it can still happen, but chance is low. They naturally avoid what makes them feel worse because every day is a balancing act to feel one’s best and just get through life.

For many, their entire bodies are giving them unreliable messages.  People they once trusted lack understanding and education and walk away or the survivor avoids others for the same reason.  These people become experts in compensating.  They are the best resources to educate others.

TBI and chronic illness survivors are reliable

Survivors are always blamed for every minor infarction within a family and elsewhere.  They are vulnerable and easy targets for others yet are the most supportive and holistic people in the world. They are aware, and more astute then ever before in their lifetime!  Their situation brings them expert knowledge that should never be dismissed.

A100319_MAMC_TBI 1

A100319_MAMC_TBI 1 (Photo credit: Joint Base Lewis McChord)

It’s first hand education, not old research from small fragments of many people.  Albeit, research is important. These people learn to cope on many levels. Life is comprehensive with so many phases, and in this population everyone can learn from their experiences.

Every experience is different, as every brain injury is distinct and every life problem is discrete as we are simply unique individuals yet society lumps people in categories.    These people are NOT complainers, they are EDUCATORS with or without certificates or degrees.

Fatigueoexhaustion (term coined by this author) is specific to TBI but may be more common then professionals believe in many chronic illnesses.  With this level of exhaustion one cannot function at all without rest and sleep. Even at that, functioning is still limited.

Any interruption in the sleep or rest cycle limits one’s ability to function at all in any given day.  Frequently, this causes an inability to be productive even with the simplest or smallest tasks.  This is holds true with interruptions of concentration.  When the energy is used the only recovery is by undisturbed rest and sleep.  Sleep and rest is often a number one problem with most health problems.  It’s the time the body heals and recovers.  If you don’t get it, you don’t recover.

The question is “when will one have a good day?”   It’s a vicious cycle albeit an unpredictable cycle. It is the belief that there are many good days on the horizon that gives one HOPE.  One good day offers hope and yet disappointment, as a false sense of euphoria.  You simply enjoy one day at a time and look ahead to better days.

Many learn compensatory strategies with time, and function at a higher level then expected because their own ability to adapt.  Most of all they make excellent decisions albeit delayed.  Trusting one who truly understands health problems often is another’s best resource.

Unfortunately, all too many (probably millions) don’t have innate ability to adapt and change, or simply the support of others, or even no resources and struggle far more than imaginable sometimes giving up!  It’s for those reasons other survivors are trying to help to ease some struggling.

Cognitive skills improve 

Poor judgement and decision-making improves with practice.  They think through every aspect of problem solving because of their unreliable messages and signals their bodies and brains submit.  TBI survivors are always under a microscope because others believe they are “wrong” or “unreliable”.

If others listen to what they communicate you might find them denying what they hear.  The reality is that TBI survivors have clearer memories than many believe as they would become too confused if they didn’t tell the truth.

Rarely, will they be found in lies because they couldn’t keep fiction from nonfiction straight.   In reality, they have enough to deal with to keep matters straight that they don’t get involved in nonsense by choice.  It’s unfortunate that because of their vulnerability they easily fall prey to manipulation.

People that have endured health issues or have dealt with them on a personal level of friends and family are often the most caring, compassionate, trustworthy, and honest people in the world.

Remembering that confabulation is a form of filling in gaps of loss memory and is automatic and not under conscious control.  The same holds true when incorrect words or names are used not and many other areas.

However, early after injuries and illness confabulation is perceived by others as lies.  It’s not their problem, but the lack of education and understanding about injuries and illness by those who perceive things to be untruthful.  In the end, it does reflect right back to the survivor … it’s always one’s problem and they are to blame!  These survivors go through life taking the blame when others can’t take responsibility for their actions.

Perception and Deception

It’s a simple fact majority of friends and family do not research, do not become educated, do not become advocates, and are only temporarily supportive at the first onset of injury or illness.  Their “happy” lives continue on in a sense of denial “you are the problem”.

So, if you feel very alone in this process of struggling to regain your life your perceptual abilities are not deceiving you.  Don’t question your own perceptions.

Your perceptions are based upon your entire life experiences, not just the beginning of a life-altering change.  Deception by others is a likely scenario, and not your perceptions being deceitful.  Ask yourself if it is perception or deception?

Constantly working on answers and keeping healthy

TBI and chronic illness survivors spend a great deal of time struggling to find answers to improve.  They are constantly working on ways to keep healthy, regain strength, and improve cognition.  These survivors are unraveling the mysteries of brains, but are professionals listening?

Survivors provide details of daily lives, precise symptoms, and spend every day trying to figure out what works and what doesn’t.  It is the HARDEST JOB ON EARTH!  Ask any TBI survivor and each one will tell they would rather be working when life was structured and predictable.

There is no predictable moment or day with TBI.  There are triggers, but reactions remain unpredictable!  Everyone would love to have those predictable days return.

Research does prove that TBI can lead to Dementia, but it does NOT have to be that way … Fight back every day and retrain the brain from the start of injury!  Let’s prove this to be a myth instead of a fact!

Dementia and other progressive cognitive disorders

Unfortunately those who live with dementia and Alzheimer’s develop a gradual (continued in Part 2)

Related articles

**********All material presented on Brain Injury Self Rehabilitation (BISR) is copyright and cannot be, copied, reproduced, or distributed in any way without the express, written consent of Edith E. Flickinger, BSN RN. 


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13 responses to “Is it TBI, chronic illness, cognitive disorders, dementia or Alzheimer’s? Part 1 of 2

  1. brokenbrilliant

    October 14, 2013 at 2:28 pm

    Reblogged this on Broken Brain – Brilliant Mind and commented:
    Good reading – good food for thought

    • brain injury self rehabilitation (BISR)

      October 15, 2013 at 7:19 pm

      Thank you for the reblog. I hope it doesn’t disappoint your readers but it should provoke some thoughts.

      • brokenbrilliant

        October 15, 2013 at 8:07 pm

        Oh, I’m sure it will not disappoint. We need all the voices we can get! Keep on writing…

  2. brokenbrilliant

    October 14, 2013 at 2:35 pm

    This is a great piece! It speaks so so many aspects of TBI recovery — and it’s great that you point out how reliable we are. If we could do better, we most certainly would. Thanks for pointing this out.

    • brain injury self rehabilitation (BISR)

      October 15, 2013 at 7:18 pm

      I love the fact that we all have different perspectives that we’re sharing with TBI. Maybe or hopefully someday someone will put all these facts from everyone together and unravel what is believed to be mysteries of the brain.

      • brokenbrilliant

        October 15, 2013 at 8:07 pm

        I sure hope so. There are so many who are really struggling and need help. We do what we can, but there is so much more to do…

  3. jack

    October 14, 2013 at 10:01 pm

    very true, very sad but thanks.

    • brain injury self rehabilitation (BISR)

      October 15, 2013 at 9:18 pm

      When I have questions and need to discuss another opinion I consult a Nurse Practitioner who had 7 brain surgeries … but has clarity of thought better than many practicing healthcare professionals! When she regains energy I believe she’ll be another great story of brain injury survival!

  4. tlohuis

    October 15, 2013 at 3:51 pm

    Well written and I really enjoyed this post. I don’t suffer from TBI, but a long list of other chronic illnesses, one being CFS. No matter if I sleep 2 hours, 20 hours, or none, I will never feel rested. My REM sleep is delayed by 3+ hours, and I suffer with nonrestorative sleep pattern, which is all tied together with all the illnesses. I do, however, have a friend with TBI. I really understood this post to the fullest. I wish others could.
    Take care,

    • brain injury self rehabilitation (BISR)

      October 15, 2013 at 9:30 pm

      Chronic illnesses and TBI overlap in many areas. One of the greatest is sleep. Without or little sleep one’s pain increases. I had no REM sleep for all 18 1/2 years as I’ve had sleep studies that also are consistent with spinal cord injury. As soon as I began proper treatment my dream state returned. It’s amazing how the lack of hormones in the body makes the entire body go haywire! Everyone deserves a thorough examination, extensive blood work, and whatever it takes to reach their optimal level of functioning. Each symptom needs to be addressed and resolved … one at a time! I will watch as you regain your life and decrease your pain. All one needs and wants is control … and you are on your way! Good moments will eventually outnumber bad. Measure the good as moments and not entire “good” or “bad” days. Replace thinking as the number of “good moments” or “bad moments” in a given day. Take care and stay safe. E

      • tlohuis

        October 15, 2013 at 11:33 pm

        May I ask what your treatment for sleep is? Proper sleep with REM sleep and restorative sleep? I really have to start getting some restful sleep or I’m going to lose it. I take Melatonin, pain medication, sleep medication and still stay awake all night. Sunday night, I never went to sleep until Monday around 5:30 p.m. I was awake about 34 hours straight.
        I had to have a hysterectomy 3 years ago due to all kinds of problems, cysts, fibroids, poyps, endometriosis, you name it, I had it. It took 3 surgeries because I have a hereditary blood condition called factor V leiden which puts me at a much higher risk of developing blood clots. I can’t take any hormones because hormones can cause blood clots, so my doctor was trying to be conservative and tried to save me at least one ovary for the hormones, but I continued to get cysts and she finally said she couldn’t keep operating on me every month and had to take my one and only ovary I had left. So, if hormones have to do with sleep, I am totally screwed forever. Take care.
        Tammy 🙂

  5. Scottish Head Injury Music Support Group

    October 17, 2013 at 4:34 am

    Great blog. Really well written. Would you allow me to include your blog as a link on our website?

    We are just starting out and we would like to include relevant information.

    We write and perform music which is written for those who suffer any form of brain or head injury. We also write songs that carers can relate to as the impact to their lives can often be forgotten.

    You can check us out at, YouTube/SHIMSGROUP and Twitter @SHIMSGROUP

    Keep writing your blog. It means so much to so many people that are unable to. Superb stuff.

    Maybe you might like to write an article about what we do with music and our mission to raise awareness for brain and head injuries.

    Best regards, SHIMS (Scottish Head Injury Music Support Group)

    • brain injury self rehabilitation (BISR)

      February 2, 2014 at 10:11 pm

      I apologize with such a late response to your comment. Your music is an excellent idea and the lyrics convey the perfect message. I will write something about your music, but in the meantime I did add you to my blogroll so others visiting my website can travel over to see what you are doing to help with brain injuries.

      It’s all these things, including music that will help others understand, and help those surviving to feel support. Thank you for offering so much to others. Take care and stay safe, Edie


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