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Life with a Brain Injury: Preparing Yourself and Your Family

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Garry Prowe, Brain Injury Success Books

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LIfe with a Brain Injury: Preparing Yourself and Your Family
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This chapter on life with a brain injury is excerpted from Garry Prowe's book, Successfully Surviving a Brain Injury: A Family Guidebook.

In 1997, Garry's wife, Jessica, sustained a severe brain injury in an automobile crash. "At the time, I spent way too much time accumulating the information I needed, not only to understand the medical aspects of Jessica's brain injury, but also to handle the myriad insurance, financial, legal, personal, and family issues that accompany a serious blow to the brain. I recognized the need — that stil exists today — for a book that comprehensively addresses the wide variety of issues families face in the first few months after a brain injury.

"To research this book, I assembled a panel of more than 300 survivors, caregivers, and medical professionals who resonded to my email questions and reviewed portions of my writing.

"For us, this project is a labor of love. All profits fromt he sale of this book will be donated to brain injury organizations."

* * *

The brain oversees everything we do:

  • How we move our body (physical)
  • How we perceive, recall, and process information (cognitive)
  • How we communicate with others (communication)
  • How we feel (emotional)
  • How we behave (behavioral)
  • How we interact with others (social)

It’s easy to see how a serious blow to the brain can have a devastating impact on the survivor and those around her.

As different parts of the brain control different functions, the impairments acquired by a survivor depend on the precise location and gravity of her injury. Since every injury is unique in the damage it causes, every survivor acquires a unique mix of complaints.

It’s impossible for a doctor to review your patient’s CT scans and MRIs and predict the deficits she will acquire. Certain functions, however, such as memory, language, and information processing, are lodged in multiple areas of the brain and are almost always affected by any serious injury.

Later in this section, I list the more common impairments of a serious brain injury, divided into the six categories described above. As you review these lists, remember, no one survivor will experience all of these complaints.

There is a powerful cause and effect relationship among the impairments produced by a brain injury. Some can be called primary; others can be called secondary.

Primary impairments are those directly related to brain damage. These include most of the complaints in the physical and cognitive categories. Secondary impairments are those that develop as a consequence of one or more primary impairments. Communication and social complaints mostly are secondary impairments. Emotional and behavioral complaints generally occur as both primary and secondary impairments.

This can be confusing. So, let’s consider five examples:

  1. Mary was a marathon runner; she now walks with a distinct shuffle (primary physical). This humiliates her (secondary emotional). So she rarely leaves her house (secondary behavioral and social).
  2. Susan was training to be a doctor. Her injury dashed her dream (primary cognitive). She is now depressed (secondary emotional) and not much fun to be around (secondary social).
  3. Changes in the chemistry of Beth’s brain cause her to be jittery (primary emotional). Medication helps, but the drugs cloud her already foggy thinking (secondary cognitive). She gulps Mylanta to quell her anxiety-driven heartburn (secondary physical).
  4. Nancy was an auctioneer. She now has a problem expressing herself (primary physical and cognitive, and secondary communication). She lost her job and is worried about paying the rent (secondary emotional). Her anxiety causes her to unconsciously tense her muscles, aggravating the pain in her spastic arm (secondary physical).
  5. Martha’s major complaints are disinhibition (primary behavioral) and impaired short-term memory (primary cognitive). She’s the life of the party. But, she lost her job as a waitress because she spent too much time flirting with the customers (secondary social) and mixed up her orders too often (secondary communication).

It is important to understand that secondary impairments can be just as debilitating as primary impairments.

Warning: Some caregivers tell me they preferred not to know what the ultimate outcome might be for their survivor. Others, like me, wanted to know all the possibilities right away: the worst case, the best case, and everything in between. If you’d rather not speculate about the future, that’s okay. Just jump to the next section.


Physical Impairments

Physical complaints are the easiest to detect and the quickest to be treated. There’s no hiding that somebody walks with a shuffle or has little coordination in her left extremities. While many physical deficits are permanent, others can be remedied or moderated with physical therapy and other types of treatment, such as exercise, surgery, and prescription medication, taken orally or injected into troublesome areas.

The one physical complaint every survivor experiences is fatigue, particularly during the early days of recovery and rehabilitation. The healing brain devours energy. The patient’s remaining get-up-and-go is gone quickly. The injured brain must work double-, triple-, or even quadruple-time to perform even simple tasks. In rehab, Jessica sometimes slept sixteen or more hours a day. Even today, she frequently needs eleven or twelve hours of sleep to re-energize herself.

Some of the other typical physical complaints caused by a brain injury are:

  • Headaches
  • Spasticity
  • Partial paralysis
  • Seizures
  • Chronic pain
  • Disturbed sleep
  • Poor endurance
  • Speech difficulties
  • Swallowing difficulties
  • Changes in appetite
  • Hypersensitivity
  • Muscle weakness
  • Altered sexual response
  • Changes in appearance

Also, it’s not uncommon for survivors to find one or more of their senses — sight, hearing, touch, taste, and smell — altered by their injury.

Finally, many folks living with brain injury are clumsy due to impaired muscle coordination, balance, and motor control.

From Sucessfully Surviving a Brain Injury: A Family Guidebook by Garry Prowe, Brain Injury Success Books, © 2010 Garry Prowe. Used with permission. www.BrainInjurySuccess.org. You can contact Garry at info@braininjurysuccess.org.

Comments [31]

Was in a T-Bone vehicle accident 1 year ago. I take life one day at a time and cherish every moment, as I was also born with a congenital birth defect of missing top bone in neck, so I really shouldn't have survived being hit at 60 MPH rolling on side of car and then popped onto the roof went unconscious for a bit and hung upside down for a while. Had a great team of neurologists. :)  First was put on brain rest for 2-3 weeks (no electronics, no cell phone, no TV, etc. no reading no talking about emotional subjects, etc.) Doc said, if you are not completely bored out of your mind, your not doing it right. I could not talk right (mixed up letters in words) and could not walk unassisted for about a month and a half. The doctor made a wiggly snake like line from the top left of the page to the bottom right of the page and said to me...this is how the recovery will go...You will have a couple really good days, and then...Bam...You will feel like the week after the accident. It will get better but slowly and it will feel like you take two steps forward and three steps backwards. This has been true. At first I was also very emotional. Cried a lot, now I don't. At first I had migraines and now they are getting better. Language is sometimes still a bit of trouble and frustrating when I'm more tired. I have to take frequent brain breaks during my work and this helps me to not feel so brain taxed. I have some vertigo/balance issues as well but manage these.

Good luck to you all and this will get better and better and then you will find your new normal and so will your loved one's. They will have trouble understanding and don't know how to help, and want to, but will eventually find their new normal too. :)

Much love!

Dec 20th, 2016 12:01am

My mom has been in ICU for 5 weeks now from a major fall down 19 stairs in results of TBI. She is 52 as an LPN. They have put a VP Shunt and trach in to help her. She is now on 30% oxygen through a trach collar. She responds to her name and wants something in her hand at all times. I'm her 28 yo daughter and the only person helping. Anybody have advise on how to stimulate her brain? Things I a can do? She does seem frustrated when I call her mom or acts confused. They are about to send her to an Ltac unit to get her off the trach. I am just so lost because I don't know what to do? I don't have kids so I am not good at this. Holding my emotions are hard. Any advise would help! Thanks and God bless!

Nov 21st, 2016 2:44am

When a person suffers from a brain trauma, why does it change their physical appearance...their face usually does not look the same as before the injury.

Oct 6th, 2016 9:05pm

I have only just come across this article and I will read again in full I am sure many times over. My daughter has an acquired brain injury - she has a condition known as Dandy Walker Syndrome ( a ballooning of the ventricle which takes over the cerebellum, in her case to be shunted for control) & complicated Hydrocephalus. In 2007 after almost a year of various interventions to stabilize the fluid in her ventricles during a procedure to remove all of the shunts, due to an infection she suffered an inter cranial infarction. She was extremely independent - had been married had 2 children, was a working independent single mum. And in a decision which is too long to go into here - it was wiped, everything erased except her family - it was strange but she didn't know who she was - but she knew her siblings, dad, me, & her kids - that was pretty much it. She couldn't talk, walk, read, or write. Didn't know how to care for herself. Over two years, 2 further surgeries, and 1 life threaten seizure I fully understand the writer's need for the information and desire to help other people with information & experience. Our case is different we have always had a "brain injury" of sorts from birth, but this new infarction the new "kid" on the block has left us exhausted as she doesn't fit the plan - she isn't in the category of going back to work or being responsible for herself - she has 24 hour care due to her vulnerability - but here is where we meet resistance from her -she doesn't know she is any different than before - she knows she has dandy walker and nothing there has changed - what she doesn't see is the work the effort to get back to where we are - the learning - the struggles - because time passes her in a blip - all of a sudden her children are older - now they are teenagers young adults - but she has missed the bits in between. daily it can be a struggle - different medications people trying to make her fit the box they want her in and people taking away her liberty because they don' have patience or understanding - not that they are cruel they just haven't learned that everyday is pretty much a clean slate till we can find the trigger to get on track for the day and she knows where she is. she is 38 now and I am still saddened by the lack of knowledge for families we had nothing and i have pretty much wrote our own pathway to encouraging a better life style - she is not an old lady top be fussed over and fetch tea for nor is she a child to be scolded nor does she lack intelligence to be treated with no understanding of the world  - she is in a crazy slow confused world that if you are patient and give her time she will catch up -

Thank you for writing this it helps me form the pathway even further. Brain injury is personal in every way no 2 are ever the same but having the information that helps provide a gage is extremely useful

Sep 22nd, 2016 8:35am

Mums recently had 3 falls and resulting 3 seizures. She has altered a lot. We are awaiting MRI and neuropsychology appointments. This information is so very helpful. Especially as mum seems to be all those negative behaviors with only myself. This has helped me understand a lot about what is going on, which in the long run will help me to understand and I hope help.

Sep 4th, 2016 2:07pm

I had a brain injury years ago in my late teens and I am still having severe memory issues... What can be done??

Aug 27th, 2016 10:11pm

This is just what I needed. My husband started having memory issues about 16 months ago. We have had MRI and a echo of the brain. Nothing is advisable. He has finally been set for a neropyhc test in Sept. I think he had a brain injury but I don't know when it happened. Recently it has worsened. He ask questions that don't make sense. Are we married? Whose dogs are those? Etc. I can't wait for this test so we can get a diagnosis and maybe some treatment. He is only 57.

Jul 23rd, 2016 4:37pm

Hello to all and thanks for this remarkable article. I had Brain Aneurysm Surgery 11 mths ago. I feel so bless to still be here. Two Aneurysms one burst and one did not. I was 41 at the time and had never heard of an Aneurysm. I work out, eat pretty healthy so was really shocked when a very massive headache turned out to be a burst Aneurysm. Anyway I am here and I am grateful. My only concern is that I find I have become very verbally aggressive. Never use to curse or b short tempered. I seem to b the exact opposite of the person I use to be. Before the surgery I was a calm spirited person. This behavior started like 3 mths ago, I decided to monitor it and it keeps getting worse, that's why I am constantly online searching for articles and was really happy I found this one. I just hope I can have the old me back but if not I will just have to live with the new me and remember it could have been worse. One more appointment with my surgeon so I will mention this new behavior to him. God bless us all and thank you and the guys for all your hard work. Only very detailed article I have seen online.

May 22nd, 2016 9:53am

I have had a brain injury in1992. A contrecoup injury. Even now experience daily problems. This has helped me so much. I was divorced and my family out of town. They had no idea the information I just read. I had to take my children also in wreck to follow-up appts. as well as go back to work. Good thing I worked in hospital as Respiratory Therapist in ICU so doctors could always monitor ne. I still don't remember the date daily. No short term memory, I can read a whole book now. I am retired and blessed. Thanks

May 1st, 2016 12:07am

Just reading the excerpt from the book helps for me to realize that my husband's TBI recovery is not unique.  After the initial hospital recovery from the coma, and the 5 weeks of rehab, he was only able to stay at home for a week before the angry out bursts sent him back to the hospital, and now a skilled nursing facility.  I feel over whelmed with trying to visit and keep up the home, job, bills.  But then I think that I need to get a grip, because I am not the one with the injury.


 

Apr 1st, 2016 2:25pm

My husband has now been classified as having Aquired Brain Injury(ABI) caused by Multiple Sclerosis ...it has taken many years to be recognised and acknowledged but now that it has been diagnosed I can see every element of brain injury discussed in your article. It is classified as "severe injury" rquiring 24/7 care and was obviously not an expected outcome for MS...just unlucky i guess but do keep shouting if you recognise or experience any of these problems. I am finding it easier to deal with and care for my loved one now that I have a formal diagnosis and everyone realises that he isnt just being difficult(which I always recognised).Be aware that Brain Injury isnt always the result of an accident

Jul 3rd, 2015 1:41am

Since my Accident in 1994 when I ran into a van at 70+ Kmh on my bicycle i have suffered with brain injury. Initially it was very severe but over time it improved a bit. Improvement is only possible if you do something to force it to happen. 
My biggest problems relate to managing time, being isolated from society - I really dont care much about interacting with people and am happy if I dont have to do this. It is very difficult dealing with others and keeping up with conversations.
From my early experience, I can remember though how everything was so slow and I was left behind. By the time I started to grab at a comment the conversation had moved on. Now 21 years later I still have this problem but can disguise it better.
My wife suffers the most because of the loss of control of Anger and the simple meaningless thing can set this off. It is not possible to stop it even though I see it as it is happening. This is so frustrating from my side. It is like someone else is in control and cannot be stopped until they are finished. 

Jun 11th, 2015 10:13am

Thank you for this ARTICLE X

Jan 24th, 2015 10:20am

There is a treatment! No lie! Go to www.homeopathicwonders.com or www.marsvenus.com I had a TBI 18 years ago & a few since...I struggled for 2 years then I got better, but not where I was previously. I felt like I was walking through water chest deep & everything was a struggle. It was Chutes & Ladders...I would make progress then have a setback. Fortunately God has never left my side. God has blessed me with amazing experiences & a unique perspective, but I am grateful to have found a homeopathic treatment to balance out neurotransmitters (ex: serotonin is your "Happy" chemical, dopamine is your "Motivation" chemical. We have 50 neurotransmitters). An imbalance of these chemicals can result in a high risk of developing Parkinson's, Alzheimer's, ADHD, Bipolar, Schizophrenia, etc...or so I understand. I am not a doctor, but it makes sense after all of my research. The treatment is inexpensive & I want to do it again! It only took me 18 years to find the answer that not one doctor could tell me. Why don't more healthcare professionals know about this? Spreadthe word & God :-)

Jul 28th, 2014 7:16am

Neurogenesis is the `new' brain cell formation. They appear throughout life but are found in much greater numbers after an insult to the brain. Unfortunately most die but some take up where cell death has occurred. When there has been a severe memory loss (e.g. retrospective autobiographical loss following `shock treatment', boxing and other repetitive injuries), it is the `connections' built up over a lifetime that have gone, usually forever. But, new pathways can be built using current rehab processes, including repetition. I lost my tennis game and still have problems in `crossover' type exercises, but have been re-patterning slowly over 14 years. It wasn't until I noticed 12 months ago that my `serve (tennis) was automatic, that I realised this. But my memories of my children growing up, my skills as an artist and writer (novels, stories, plays & screenplays), have never come back. Two neuropsych tests 3 years apart (2003 & 2006), confirmed brain damage, particularly in non-verbal performance, (creativity). Over the last year or so, I have some increasing memory lapses, mostly ideas and words that are gone before I can write them down. If they come back I don't know about it because I `lost' them. The neurologist asked me if these phenomana happened when I was driving but I don't know because it's only when I'm with someone else who notices that I realise that something happened. I wish the medics would see past their assessment that the increasing problems are minor. They are, but they are new and changing. It's like someone saying, okay, that's only a small mole & you're saying but it's a NEW mole & it turns out to be melanoma. While they're calling you a hypochondriac, you're quietly dying. Good luck all. There are techniques to use until the neurogenesis cuts in (I hope). Mind you, they're not too sure if they cause epilepsy, so, swings & round abouts. 

Jul 23rd, 2014 5:39am

i suffer memory loss because of a bad blow to my head which was inflicted on me by someone else..i get very annoyed when i cant remember simple little things and that was two years ago and its not getting any better..

Jul 17th, 2014 12:39pm

I was a successful Art Tutor until I caught Encephalitis in 2004. I have not touched a brush, paint or pencil since. My left side of my body, leg and arm is useless and I suffer really badly from Anxiety, abnormal shaking and therefore agoraphobia. I feel my life has been taken away from me, it is so hard to feel positive about anything these days......I can no longer even handwrite. Denise.

Jul 10th, 2014 12:48pm

What about brain neuroplasty? The ability of the brain to develop new pathways. Also, I have even been hearing that new brain cells might generate. If a person after a TBI was able to really focus on brain health/restoration, couldn't there be improvement in many of these symptoms? 

Jul 10th, 2014 12:48pm

My tutor worked for 5 years, 2-3 hrs a day to return me from a Glasgow 3. I've passed 6 post-secondary courses, won provincial awards in two sports and made giant leaps in adult things and all were noted. Start with the basics and move up slowly as you did when you were first maturing. Brain injury is not the end but the start of a new life!

Jul 8th, 2014 11:42am

I feel so blessed as I accidentally came on this site.

My daughter  (17 yrs at the time) Jeniece was in a vehicular accident  Aug. 2012 and suffered diffuse Axonal, severe brain injury, to the brain stem. Everything you mentioned in this article is  so on point and accurate. I would love to get this book to get more information and testimonies from people who have walked this road.

Thank you so much for your  wealth of information and experience in this area.

Denise Sealy

Barbados

Mar 29th, 2014 11:59am

It is a relief to have found this site.  My husband suffered grand mal while in hospital while  detoxing from Klonopin and alcohol. For the following 6 months he was in 2 hospitals, 1 nursing home and finally a last hospital to learn how to talk, walk, and to generally function physically and mentally.  He recovered very well for 11 months and, curiously, took on another voice (It was like having Christian Slater in the house during that time) for about 6 months.  During his recovery he was able to work with carpentry tools in our workshop, design and build a new kitchen here at home, making all cabinets to perfection.  I thought, wow, that wasn't so bad.  At 11th month, new challenges began with auras and two more grand mal seizures followed by many auras,  We worked through Kepra, Depakote, and Topomax moving from one to the other, mixing one with the other and now back to only Depakote he has begun having up to 8 auras a day.  It's now time to call the MD about this to see what to do next.  His affect has remained calm, content while discouraged, and continues to do all the food shopping and meal preparations serving superb meals at the end of each day.  I think we may be entering a new phase of the challenge and am very grateful to find this site.  Family has picked up some crucial expenses and I'm sure will buy the books recommended.  My husband has accepted our new life more easily than I have.  I am sadly resentful to have lost my daily freedom to be me and the workshop sits empty of his presence and the sounds of rewarding creativity.  I am somewhat fearful of our future wondering who will take care of me as my aging presents new challenges.  We will move forward, more bonded than ever, into a future I had not envisioned.   So, thanks to the reading on this site and to all of you, we will go forward into this great unknown, with less trepidation.  Thank you, Annie

Feb 12th, 2014 10:33am

My neurologist has just told me I have multiple brain injury issues going on. These are due to multiple MVA's in the past. I have been suffering for years and with all of my symptoms and agony, not 1 doctor or specialists (including other neurologists) every mentioned TBI. I am now scheduled for current MRI, CT scan, some type of brain wave test and will start working with a Speech Language Therapist. I have been suffering since I had my St MVA 17 years ago and have had 2 additional MVA's since - none of them my fault. 

I would like to thank you for putting this book and article together. I have only read the article so far. I will be ordering your book. The article is right on 100%. Almost everything you have in your article is or has affected me. Thank you so much for taking the time and energy to collect the data necessary to put this together. I just can not imagine how many people there are out there like me who are suffering in pain and misery and doctors think they truly are "crazy" and it is just "in their head". I have had multiple doctors indicate in their medical notes just what I stated - it's in my head and I am just a hypochondriac. 

Thank you again and may God Bless everyone and give us and our families the patience needed to survive this travesty.

Jan 11th, 2014 5:58pm

THANK YOU!!!! I had brain surgery for Epilepsy in 1990 and I have been searching the INTERNET almost obsessively to try and find a 'plain English' article about what life is/may be like AFTER surgery/a brain injury. I no longer have seizures, but I have other deficits that I am trying to understand still. I will try and look for your book in my local Chapters. I can't do Amazon etc., due to no credit card. Bless you for your work and for what your family went through. Sheri

Oct 30th, 2013 10:37pm

My husband suffered a brain injury on April 6 2013, he has progressed well I think, there are many problems though with anger, depression and things to that nature, my biggest issue is that he is withdrawing from me, i feel like our marriage is falling apart day by day, does anyone have any advice on this situation. I do know that he has not accepted this accident as part of his life and I dont think that he wants to.

Oct 29th, 2013 1:42pm

I lived with a TBI spouse for 12 years, during that time no one ever mentioned to me or did I know that His violent rages were associated with the TBI, blackouts were common following such an event. I, felt to blame For His rages. I finally divorced Him after 17 years of marriage. This article would have been invaluable to us. Thank You for this very informative article, I'm sure that in the future it could help couples going through this. God Bless!

Aug 20th, 2013 5:29pm

To the person who commented back in June 2012, your situation is remarkable just by the little bit you posted! Right now, there is a little boy, Tripp Halstead, who has suffered a severe TBI on Oct 29 2012. Like his page on FB to follow this families story, incredible family he has behind him helping him get better!! God Bless to you all!! Jessica A. San Antonio

Jun 18th, 2013 8:26pm

Thank you thank you!!!! I had a burst brain aneurysm ten years ago. I am very good at faking I'm fine but I saw myself in so many of your points. God bless us all!!

Jun 5th, 2013 11:21am

Ten weeks after a serious bicycle accident, I am finding out more and more about TBI and some of its affects on me and my loved ones. Friends believe that I am back to normal. Family knows this is not the case. Every week is a new experience for me, but I move ahead.

May 30th, 2013 12:09am

Quality information! I will be sharing this article with our members living with seizures as a result of TBI. You are doing a good work. Keep it up! I look forward to positive results from bringing this to our members at National Seizure Disorders Foundation in order to help them understand and take positive action in living with brain injury. Peace - Tonya Heathco,CEO National Seizure Disorders Foundation http://nationalseizuredisordersfoundation.org

May 29th, 2013 12:32am

I was hit by a car last year and suffered severe traumatic brain injury (my GCS was 3), they had to remove 2 pieces of my skull to relieve the brain swelling. I guess I must be lucky or something because the best news (should I not die) that they could give my husband was that I would be a vegetable in a nursing home for the rest of my life. Such was not the case. I'm back at work, my brain functions are pretty normal (not as good at multi-tasking as I used to be, but I'm sure this will improve), I'm not overly sensitive or depressed, and generally really happy to have made it! I enjoyed this piece very much, and just wanted to say thank you. =)

Jul 17th, 2012 12:50pm

This has been a great help for me as caregiver to my husband who has cognitive deficits, short term memory loss, antegrade and retrograde amnesia, impulsivity, and poor judgment from resection of a colloid cyst. Thank you.

Apr 23rd, 2010 10:10am


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