Does my TBI put me at risk for Dementia or Alzheimer’s disease

Introduction :

As an 18-year TBI survivor, I don’t remember critically thinking through my decision to buy a motorcycle in 2003.  Fortunately, I can say I am blessed to still be here, despite my lack of discernment!  God definitely gets the glory for my existence and testimony while my recovery continues!  I believe I am more conscience of the results of my actions (what I do, say, or even attempt) than ever before!  I guess one could say I have a bad case of buyer’s remorse from the motorcycle in 2003, because I now go through all possible scenarios before I make decisions.

Since then, life has been interesting and I honestly believe all things happen for the right reasons!  Many friends, family, and co-workers have heard the story about my accident and recommend that I write a book.  I always wanted to get started but working 40 hours a week did not provide the time needed to accomplish that goal.  So… when my contract job ended in early 2020 and I was not able to find another job, I believed that God was opening up my window of opportunity to do what I always said I wanted to do.

Now that I am finished with the book and waiting for publishing, I am looking for more to keep me busy.  So, I got connected with the local graduate chapter of Alpha Phi Alpha, where I can continue to serve the community here in Florida.  In Gamma Zeta Lambda, I am now directing a program called ‘My Brother’s Keeper, which has been working with the Alzheimer’s Association.  This is a perfect fit for me considering my experience with brain injury. Our current focus is working with the Alzheimer’s Association to expose the community to the disease, its causes, and risk factors.  Our efforts include scheduling community forums that allow us to provide the community training on ways to address and identify individual’s changes to memory, thinking, or reasoning.

“Dementia is a general term for a decline in mental ability severe enough to interfere with daily life. Dementia is not a single disease; it’s the umbrella term for an individual’s changes in memory, thinking or reasoning. There are many possible causes of dementia, including Alzheimer’s. Disorders grouped under the general term “dementia” are caused by abnormal brain changes.”

When I think about my experience with brain injury, I can’t help but to think about dementia and Alzheimer’s disease.  During my research I focused on the links between TBI, cognitive change, dementia, and Alzheimer’s Disease.  According to the Alzheimer’s Association, the effects TBI survivors can have from TBI can be long lasting or even permanent (depending on severity).  It’s also important to note that these injuries may increase the risk of developing Alzheimer’s or another type of dementia years after the injury takes place.  

The link between TBI and Alzheimer’s Disease scared me because I always thought of dementia and AD as something ‘older’ folks dealt with.  Based on my experience, when I look through this list below of symptoms from CTE, a form of dementia, I totally relate to this ‘sudden change’ in life:

  • Memory Loss
  • Confusion
  • Impaired judgment
  • Impulse control problems
  • Aggression
  • Depression
  • Anxiety
  • Suicidality
  • Parkinsonism (movement symptoms similar to Parkinson’s disease)
  • And progressive dementia.

As I read through their topic sheet more I am concerned because there’s no known strategy to reduce the possible long-term risk of dementia after experiencing multiple mild, moderate, or severe TBIs. Does this mean that the memory issues I suffered through post-accident will return when I am older?  Am I getting a sneak-preview of the kind of memory I will have during my senior years?   Or should I not be too concerned because of my previous experience working through this challenge?  

I know I was so much younger then. Will I have greater patience in my later years of life?  Or will my fuse be a lot shorter? 

Regardless, I don’t think I am looking forward to my ‘TBI version’ of Groundhog Day.  I know that every survivor would not want to go back in time to feel or even experience the pain from not understanding themselves during that time.   However, it’s also important to understand that not everyone who experiences a version of TBI develops dementia.  

This was a relief to see but based on a 2016 study by the Journal of Neurology, “… a history of TBI may accelerate the age of onset of cognitive impairment by two or more years.”  I guess we will need to remember our coping strategies from our days fighting through TBI.  It feels like the saga never ends with brain injury, which explains why I never felt fully recovered!

Conclusion:

I wanted to make survivors aware of the various challenges we may face during our senior years.  Dementia and Alzheimer’s Disease are real things we all may face as we get older.  But you know the challenges never end for the TBI survivor!!  Being a survivor prepared me to handle the extra stares I received when walking in public, and the questions about my weak left side.  I also learned to keep cool after receiving inpatient looks from the public when it took me extra time to get down on one knee to retie my shoe.   Being a survivor has forced me to think through challenges differently!  For example, COVID-19 presented survivors and non-survivors with unique challenges.  While we all have heard about adjusting to our ‘new normal’, it is important to note that survivors have been adjusting and doing okay.  

Do you think we survivors should give non-survivors coping strategies?  I know that in our ‘new normal’ we have had more bad days than good, and sometimes we cannot retrace our steps from 5 minutes ago.  However, I believe we may do a better job of handling ourselves when we are asked to put on a mask to go inside a store!

**I also wanted to attach a YouTube webinar I received from the Alzheimer’s Association called “Heads up: TBI and Understanding potential long-term consequences”

HTTPS://ALZPROGRAMSANYTIME.ORG/REGISTER/HEADS-UP:-TBI-AND-UNDERSTANDING-POTENTIAL-LONG-TERM-CONSEQUENCES

4 thoughts on “Does my TBI put me at risk for Dementia or Alzheimer’s disease”

  1. GREAT article Rod !!!!! It truly is something to have to think about and monitor in the years ahead. My grandmother died from complications due to Alzheimer’s. I admit it’s always something that sits in the back of my mind as I grow older. My daughter’s grandfather (her mom’s dad) passed from the same thing. I may not be worried or scared about many things, but that is certainly one thing that get me.

    1. Sorry for the delay in my response… I’ve heard from some friends about their dealings with ALZ with older parents or grandparents. It is interesting because while I’ve experienced a lot of the things that someone with Alzheimer’s disease will experience, I can’t imagine myself going through it 20-30 years later. This is why I am so invested in learning and informing TBI survivors about the connections between Alzheimer’s, dementia, and TBI. Thanks for the reply Michael!

  2. Andy “rosco” edwards

    Rod just started your book “like a snowflake”. I suffered a tbi in 1995 from a four-wheeler accident. I have also suffered many other bumps on head since then. I’m currently driving semi delivering steel coils and work on a dairy n swine farm in my spare time. I also completed my associates degree in dairy production in 2003 from thy Ohio state university. That just a lil bout me n don’t mean to take up to much of your time. Be safe n god bless

    1. Sorry for the delay in my reply Andy… Sounds like you’ve been a survivor longer than I. I wonder if the other ‘bumps on head’ were the result of another four wheeler accident? I am glad to hear that you were able to keep things going for yourself. Congrats on the Associates Degree! How are you doing these days? Do you face the same kind of challenges you dealt with 10 years ago? Or do you feel like you’ve developed a better ‘coping’ mechanism?

      Rod

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