Lost & Found: What Brain Injury Survivors Want You to Know

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Hi... me too... 30 yrs ago... life seems to be more trying over the last 10 altho I had many issues over the 1st 20 i know I was never properly treated for the real issues as they stemmed from the TBI... that was never actually addressed Iam finally taking control with a dr who specializes in TBIs yet most issues I'm not sure of if they will change and I've already learned to cope with
What you've said about family is so true and it applies to others too... people don't understand... we appear ok from the outside and since the injury was so long ago we are expected to be fine... yet we have so many reprocussions others just don't understand and are labelled incorrectly... even if we try to explain only some may somewhat understand and then some who do they only do for a short while then forget or they just think we should be over it in time
And at this stage and in this world with so many even family being so absorbed in their own lives God forbid asking anyone to go out of their way and read a brochure outlining the basics... it's practically inevitable things won't change... unless we can somehow stand up and make that change!
Look at the recognition Susan G Koman made to breast cancer awareness... hopefully we can make a difference for others if it's not to late for ourselves by doing something so prevalent?
I'm new to the group and need a purpose... at 55 I've been out of work for 10 years due to fibromyalgia/TBI-related issues and have stabilized to where altho I'm not sure if I can do it full time or even at all unless I give it a try I have appliapplied for assistance for reeducation opportunities to reenter the workforce yet I don't know in what capacity yet...tbd
I'm too young to have this keep me down altho I'm sure if I don't push I could remain as is but I am just existing.... even if i can volunteer that would help... especially to spread knowledge of TBIs!
Let's keep positive... and the neck what others think... but if they say we're lazy or should be over it lets be knowledgeable ourselves and inform them politely... perhaps they'll learn

Hello! I have had many TBI's since a child! Most unrecognized, and even some So "incidental" with no outside wound-scar, that I never had rehab, never professional help and really no understanding of the invisible thinking challenges! No one gets it and/or thinks I am lazy-unfocused! I could scream yet I don't! I think from my Heart, do my best and yet clearly judged by even the two most close to me that I am not a financial success! It saddens me. People-friends are lost, nowhere! My connection with animals, nature...my own stubbornness and sense of purpose, let alone adversity to taking drugs...my saving grace! I feel people's-animals energy! Since young, a blessing and curse! Yet, no one knows-cares-understands how hard normal things are for me because I look normal! I share this because you are not alone! We: those with TBI, become aware in each our own way..on levels that those not affected cAn not fathom! I have helped-spoken to many as an Artist and Know fanning the embers of Our Soul-Spirit is crucial! I have a thought...a Project that has come out of your sharing and others' tonight! Thank You! Purpose with Heart Passion is necessary when the circuits of thinking are sketchy! You made a difference on my dark night! Hope the Light shines back on you...others! Luv

Don't give up! Find people who understand. Have you tried a support group for brain injury survivors? There is a Brain Injury Association in most states with lists of support groups.

Barbara

It's been 13 years since my TBI and I think now things are starting to happen with me. My bone flap was left in due to being absorption and a cap was made to cover the wound. I'm experiencing things now and wonder of the pieces of the flap may be contributing to my problems.
Anything would help right now.

Great article. Very to the point for all of us who have suffered a tbi... Hugs to all of you!!!

Hello,
I feel so jealous that most of the posters are doing so much better than my son. He had a subdural hematoma that required 3 surgeries. He was in a coma/vegetative state for 7 months.

He is still unable to walk. He is incontinent. He has a memory span of about 8 minutes. Every 8 minutes, he forgets what he has been doing and saying. He has difficulty with expressive speech.

The upside is that he understands that he was severely injured and that he is much better than he was 5 years ago. He is always happy and isn't angry. When we talk about this he is always saying, that yes he got hurt but he is slowly getting better. He doesn't give up.

There aren't many articles or postings about those who are this severe. Maybe others seeing this post may see that although the struggle is very real, that others are struggling even more.

Keep fighting!

Susan

Hi Susan,
My daughter's TBI was 5 and 1/2 years ago - she was a pedestrian hit by an SUV going 40mph - the brain injury was severe. She was in a coma for a couple of weeks and a vegetative state/minimally conscious state for a couple of years. Vegetative states are so strange but we always knew she was in there. She had developed hydrocephalus after the accident and had a shunt placed 14 months post injury. It took her 18 months from the time of the pedestrian accident to smile again - she started slowly but now she smiles easily and all the time! She is completely dependent on others for her care - she cannot talk yet nor walk but my sense through all of this is that basically she is happy. I still struggle knowing that at such a young age she had to go live in a nursing home and will likely not accomplish her pre-injury dreams. However, we are forever grateful that she had the will to continue living and we are so happy to be with her every day and provide companionship for her. We were always close and I can most certainly sense that she is comforted and happy when we are there. I think that we are still witnessing small improvements and I truly believe that she'll talk again as she has recently begun making new and different sounds.
However, I do wish there was more help for severe brain injuries. I am tired!
I hope that your son stays upbeat and continues to make more gains.
Stay strong!
Cecilia

Cecilia,

It is truly wonderful that your daughter has made it through such a difficult and life altering experience.

It is equally wonderful that you and your family are able to provide her with care and companionship.

However, I want to caution you that nursing homes have a documented track record for being host to significant abuse and neglect charges ranking from gross misdemeanors to criminal and felony.

Please be aware that individuals can and do slip through the cracks even in high rated institutions, and that the disabled are already in a unbelievably vulnerable state. Please take extra caution at all times, and learn about the signs of nursing home abuse - less smiling, avoiding eye contact, abnormal crying, ANY bruises or tender areas, excessive eye contact. Your daughter may be unable or even unknowing about the different kinds of abuse she Wil statistically be exposed to. Please take care to know and be vigilant for her. You may not personally always be there for her as the years go by, so I would urge you to speak with a Custody lawyer as well and ensure that she remains in the care of trusted family members at all times and in all circunstances. Many different 'authorities' have been known to make financial gains from hostile takeover of custody should there be moments of uncertainty, and unspeakable neglect and sometimes premature death are no stranger to being left in the custody of a faceless agency with no personal care or interest.

I don't want to unreasonably scare you, but this is the reality of health services today and for many years. And I genuinely believe you have your daughters best interests at the forefront of your heart and mind. I just want you to be equipped with everything you need to ensure her happiness.

Keep up the good work

Thank you for this post!

Thank You for having what it takes to publish this article. I can attest to every single symptom that you have mentioned. With a head injury at age 12, and no evidence of long term damage until I turned 18, it was then that I started having absent seizures for 23 years. On Oct. 27th, 2007, I underwent a right temporal lobectomy to cure the problem successfully. I was operable ONLY because the only sense on that sick of my brain was my short term memory. However, with a bruised brain and returning to work in a mere 6 weeks, it seemed as if it took forever to completely heal from the whole circumstances. I can honestly say that You and Only You will realize the genuine problems that you have, as you are the one dealing with them. Some people, especially family, could not and still can not deal with Who I became after the operation. I still work a full time job ten years later, and will NEVER FORGET Those Individuals that Stood By me and Helped me Realize that there WAS Going to be a Better Tomorrow.

Hi everyone I suffered from a head on Collision while riding my bike from my wife's house when we started dating and God bless her she has stuck by my side for over 9 years we started dating in February of 08 my accident was in may of 08 and God bless her she has stayed by my side through everything and I know I've not been easy and now after reading this Im fillaly breaking down to get help all the doctor's I've seen all they want to do is shove pills down my throat cause I'm not just dealing with a little bit of short term memory loss and a bit of long term as well but that's not the main issue it's my anger cause I'm getting frustrated with my self over simple instructions as well as compression as well I'm mean my comprehension was off a little before cause of me being ADHD but now since the accident it's worse I'm needing help cause over the years my beautiful wife also blesses me with three kids there ages are 8 6 and 4 and I really need support and help.

Thank you and god bless

Hi I myself suffered from a head injury may 28th 2008 I suffer from some short and long term memory loss as well as far as I've been told I get angry more often as well and I've noticed here lately at work it's harder to comprehend what I'm doing after a a week or two I can remember its very frustrating cause I'm 30 now with three kids they are 8 6 and 4 and I don't want them to think that the way I get angry so quickly is ok I'm trying to seek help and all these therapist want to do is shove pills down my throat and make me evan more useless to my family please I need help any advice will be helpful

Hi, being around children was one of the hardest things for me to handle and at the same time one of the most important things for me to be able to handle after my brain injury - and I only had one young son! The noise and confusion and immediate attention children bring are incompatible with healing from a brain injury.

From my experience, anger after a brain injury usually comes from frustration and/or overload at not being able to handle the situation or do what I want to do or used to be able to do.

My son was 8 and talking to him about my difficulties helped him understand but I needed as much help as I could get for awhile. My husband had to take over and spend alot of time with him on weekends. During the week I tried to do whatever I needed to do when I was alone in the house and then be sure to take a rest break/nap before my son got home from school so I could limit my focus to his needs. Camp was a life saver during the summer.

I missed alot but gradually I was able to participate in more and more family activities. Remember you are healing and you need rest to heal, even if you can't see a wound. If you were a marathon runner and you broke your leg, you wouldn't be able to run a marathon right after you broke your leg. We parents especially, run marathons in our brains all of the time. After a brain injury, you need to rest it, just like a broken leg.

I hope this is helpful,
Barbara

This is an excellent article.

People say that I am slow I can do things as fast as other people I had a hard time understanding thing but I can do it don't let people talk down on Outer people with the same promble I have.

I am going through the very samething since September 2014.
Thank you for sharing you experience.

My tbi happened a month before yours. My GP gave me a low level of antidepressants and I understand what I have and I work my way through the 'challenges'...with a sense of humor!! My husband and brother in law have been 'dealing' with my brain issues and have been advised (by me) to 'laugh off' my inabilities, they get me through the cognitive parts very well, too! I'm so lucky I perceive it this way!!!

I'd love to know of a support group here in Houston, Texas. My husband had cardiac arrest May 6th resulting in anoxic brain injury. Saturday will be 9 weeks - 3.5 weeks in the hospital & the balance in a neuro rehab/medical facility. Next week they remove the trach, and the following week he goes to an intensive neuro rehab facility.

It's so brutal to watch the expressions of full comprehension, cognitive & memory on his face, but his inability (at this time) to speak, chew, swallow or move his limbs on command. I see the frustration in his expressions, but also his sheer determination to give his all in each of the morning rehab sessions. So I'm completely proud of his achievements relative to what I'm being told others have achieved at this point - which is 3-4 weeks ahead in some areas, and a year ahead in others.

I got pushed in front of a car when I was six. I'm now 28, it just isn't easy for me growing up in a world where people look at you as a disease. I had a bad childhood and upbringing. The world is a hard place when people don't accept you. I live in Brecon Wales and growing up has been hard for me, iv been in foster care system and I'm still trying to build my life up. But it's hard when people don't accept your problems!

Have good friends in Brecon. I visit about every two years. My husband had a brain injury in Vietnam so I understand.
I wish there was a way to communicate.
Carol.

I am SO sorry for the life that you have had to endure! I truly hope that the rest of your life, you find happiness and solice for yourself!!
Yours Truly,
Christian

I agree totally with this article. My daughter had her AVM treated 3 years ago and even tho she has no physical problems, she does have some of the problems noted in the article, especially the fatigue. I am very proud of her, continuing to work as a nurse with a hard job and crazy hours.
Hi, I've just read your article about your daughter and my story might help. I had just graduated from Kingston as a Geologist in 1986 when I suffered a TBI from a car crash. I recovered physically quite quickly but was left with depression and tendency to become mentally ill when stressed. I learned strategies from physiotherapy, occupational therapy and through my own research about head injuries. I became a primary school teacher! I found I could help and inspire kids and because I used my participation in sport for recovery. I'm not saying that your daughter should teach but what I am saying is tell her not to underestimate her brains power to heal.

Help!!! My husband was severely injured in an auto accident. He will never be the same, physically, emotionally, or in any way. The physical injuries are so difficult and so is the pain. but even worse is that everything he ever loved doing is no longer possible. Things that he did for decades are now so frustrating that they lead to temper flares. He loves to work in his wood shop but it is so frustrating he is ready to give it up. I don't know how to help, encouragement makes it worse, is there help to bring him back????

Hi all survivors & angels helping encouraging. I was in a car accident with my brother I was 18 my brother 19 we were hit by a drunk driver going 80 miles an hr my side of the car . We were both ejected thrown into the highway. A truck driver stopped pulled me out , my brother was not so fortunate he was hit by some vehicles. Our accident my the front page of the newspaper, was very insensitive of them to mention after my brother was hit his body sat up . I am 51 yrs old now I spent alot of yrs in denial trying to be like everyone else it's getting harder to do. I don't feel people really understand me some try to make me feel stupid mental or lazy . It's very hard very lonely thank you for this site it's so nice to read about others that have the same struggles. People can be very cruel that's been hell for me
My roommate is a TBI Survivor. He is 35 years old and did not disclose this until after I moved in. He is quiet and accommodating; however, he early follows up with things that need attention around the house. He is completely unmotivated to do nearly anything besides watch TV. He looks lost and depressed. He has a full time job and owns two vehicles plus the condo we both love in. Lucky for me I have my own bathroom and my bedroom and bathroom ha s locks on both doors. He's not scary but his dispondence can be slightly outputting. He complains how unhappy he is but doesn't do anything. I'm not familiar with THIS survivors so I would give him a huge pep talk. Being a former teacher of special needs children with emotional difficulties, I felt his hesitancy was mental- and emotional-based rather than TBI. My heart breaks that I missed the "boat" on this one. I never knew TBI was so debilitating. Now I have to decide if I should move out or stay. I have to "put up with" some blinds installed and some blind's not installed and an air conditioner that is in desperate need of being serviced. Any help is greatly appreciated. Thanks...
When i hear you talk about her it blows me away!! I have a tbi from a fall and i am 56 and when you mention depression.....it is so surreal..In my case i had a fall so i messed up my head and my back...And the pain is horrible for most..I refuse narcotics for pain so i guess that is why i feel depression,hopeless and wish i could work at my same job that i did for 24 yrs..Just keep an eye on her and find the best help for her problems...i wish you peace..I have 2 daughters myself and they miss whom i was...hard times

Sorry to hear about your situation, I am 56 yrs old and 2 yrs into my TBI with whiplash. I suffer daily with pain and it worsens each month. I will not take narcotics as I don't believe they do much good but I do find some comfort in exercise especially yoga. My doctors have tried a few medications for the nerve pain but my nervous systems doesn't seem to take to them and I end up feeling worse. So, I am trying to find the new me and learn to live with "her". This is hard for me so I imagine it will be even harder for our families. Your daughter will love you always and we don't have to forget who we were, in fact we should celebrate it and be proud! Be strong and take every day for what it is.

All of you are talking about brain injury but you write so eloquently.  It's an inspiration really.  I wish the best for all of you.

I had my second TBI in May this year. This one is way different and I've lost a lot of my verbal and visual skills. I'm still waiting to get into skilled rehab to retrain my brain. However, I can still write well and way better than I can speak. I wonder if that is true of a lot of people with TBI.

This is so helpful! I was afraid that I am being ridiculously difficult, but I am normal. Sometimes I want a counselor to talk to, but I don't feel like they even get it. I want to communicate with someone who can understand that things just aren't as clean cut as they were before for me. I feel so alone

I hope you will get a counselor to talk to they might have some input you haven't thought of. Remember it's their job to help you find your way some towns have crisis lines for people to talk to when you feel alone. Good luck

You're not alone. Some of us are more functional than others. I feel frustrated being stuck between "normal" and "brain damaged" but life is what it is.

I see a common thread of people trying multiple medications and them not "fixing" the problem or the side effects being overwhelming. I've experienced this as well and found that the medications worked at first because my brain was so confused trying to renetwork itself and needed to calm down.

Think of it like this... your brain is like the earth and a meteor (a traumatic brain injury )has crashed into it. Every meteor is different, made of different materials and is a different size and shape. This meteor could hit anywhere on the earth. It could hit a in the middle of the ocean and cause only a little splash, or it could hit a major metropolitan area and knock out roadways and buildings, or it could cause the extinction of mankind. If it hits a major metropolitan area there is going to be this amount of time where there are fire trucks and ambulances speeding down the roads and nobody knows what's going on. Then there will be a time when there is the noise of construction going on all the time and you still can't use that major roadway to get where you need to go. Everything will be a little slower as your brain has to "take the long route" around this big hole in the middle of the city. How long that is will depend on the size of the meteor.

For me I was lucky that my family and friends pushed me, sometimes physically, to do what I needed. Many times I would lose my temper and use it to get what I wanted, to be left alone. And I was alone even with everyone there to help me because no one had been through what I had, especially the doctors because they were smart and I couldn't remember what I had for breakfast.

I got through that but still can't remember some pretty simple and random things like a new passcode for something or a new way we are supposed to do something at work. People don't understand because there are so many things I do remember that are so much more complex and I can't explain it to them. But I'm not alone, you are not alone, we are not alone.

I'm reading these stories and I can relate. I got a severe TBI October of last year in 2016. I was out one night, had way too much to drink(which I shouldn't of been doing in the first place) and decided to go for a walk on the road because I needed some fresh air (which I don't get because there's a sidewalk along the road) and was hit by a car because it was nighttime. I had multiple other injuries but those have healed or at the end of healing but TBI has been the hardest. I walk with a hemi walker and a little assistance from other people but I'm having difficulty with my left arm. It doesn't move. I had damage on the right hemisphere so my left side is physically effected I do stretch the muscles in physical therapy. I start a program that will work my brain and whatever I can. It includes physical, occupational, and speech therapy. I'm just really hoping and praying that my left arm will be able to move again.
I was in a car crash and suffered a brain haemorrhage last year. I think I got off very lightly although suffer from all the symptoms in this feature. What I wanted to ask: is anyone else suffered a change in their sensory feedback? I used to love music and salivate over yummy food when it was talked about but now although I like both still I seem to have lost a jigsaw piece where I feel a bit removed. It's actually upsetting more than the other stuff as I feel I don't enjoy anything fully with this aspect of the distraction. I would love to hear if anyone else has experienced this and if it improves. X Rebecca
Just found site. Thank you, thank you, thank you! TBI survivor. San Antonio

All i can say is thank you. My daughter suffered a TBI January 8, 2015. Some driver ran s stop sign and hit her broadside. It totally changed her life and my life forever. Some times are extremely difficult dealing with her negativity, grumpiness, argumentivenes, seemingly total personality change. She seems sad all the time and constantly overwhelmed. I want the best for her. She is completing her junior year at Manchester but now uncertain if she wants to continue or do the career she is studying for. I told her it would be best if she completed her degree then do whatever she wants, even if it is not in her chosen educational field. I just want what is best for her. Your article at least helps me with some sound advice on communicating with my daughter. Thank you so much. Would love to read more. God bless.

Great worldwide group Stroke Survivor's closed group with 12k members. We all are in the same boat and yes we need support. If your reading this article you probably had a stroke or know someone that did. We are encouraged to tell are story, to ask questions or just to say we're having a good or bad day. https://www.facebook.com/groups/573759576077398/

I am a registered nurse who suffered a fall in 2007. i suffer from neck injuries and was diagnosed to have traumatic brain injury. like all others suffering from TBI, I have cognitive problems..forgetful, lost of focus and comprehension is too slow, and very sleepy at times and variable moods..short tempered...nothing really change that is noticeable to others..except the fact that I tend to grope for the right word to say and get lost at the middle of a sentence or just suddenly could not remember what I wanted to get or do..repeatly say the same story and sometimes I get so frustrated and lost. All these years I have been trying to join a group of people in my place who suffer from TBI and to be of help too if only to give me a better understanding of the changes in me and to help others cope up psychologically and spiritually to the effects of TBI.

This article is really great. I had a TBI about 3 years ago due to a ladder accident.  My wife has had Fibromyalgia Syndrome (FMS) for over 20 years.  Since the accident, my wife feels that I have changed.  Her FMS has pretty much exhausted any patience she had.  I showed her this article, but the points about being positive and having patience seem to be undoable for her.  I have been patient with her FMS for many years, but I think that it may not be a two-way street.  Since the accident we have gone to two different family therapists, but both pointed to things she was doing that were problematic to the relationship and she got mad and refused to continue.  I hope this is not what the rest of you encounter.  I hope this is not representative of the rest of you.  The points in this article, if they can be followed by family, can help in the recovery process.  I wish  you all a happy / successful recovery.

I wish you and your wife all the best! This can be very hard on a marriage. I had my TBI and neck injury two years ago. My doctors are trying to tell me that the pain I feel is FMS. If that is what your wife suffers from, then my prayers go out to her. But, I also know what TBI is like and how life changing it can be, with no light at the end of the tunnel, so my prayers go out to you. I always thought I would be the care giving in our marriage. Now both me and my husband have out issues. It is very intentional to some day just stay out of each others way and I don't mean that in a bad way but it a way that relieve any stress that can be more damaging to our health. I don't take anything personal and neither does he! We try to do one "little" thing a day to say I love you. Like, he like smoothies so I make him a smoothie. I actually find it take my mind off of my own pain!!! And he does the same for me, just something very small! Don't allow this to ruin your marriage, it's already ruin everything else, right? Loneliness will only make things worse! I pray for you and your wife!

How do you deal with a person who has a TBI and drinks himself into wonikers? Came back from his original injury and proceeded to become the alcoholic he was before. How do you deal with a person who has thrown his life away and yet still desires the very poison that rendered him unable to think past five seconds.

I am grateful for all of this info....I had a TBI from getting hit by a car (3 skull fractures, permanent brain damage). I feel misunderstood daily, frustrated mostly...my memory is shitty and 'm very angry that I get to pay the price of a distracted irresponsible driver while I was walking.

I am not a TBI survivor, I am merely a nurse researching for my Masters.  I have read a few comments about noise being overwhelming, has anyone tried using earplugs?  Just a thought, I wish you all well.

Response to the nurse inquiry about ear plugs. Many use them or noise canceling head phones. It helps some, but not enough. Nothing totally blocks and that is what is needed. Usually the visual stimulation is Also bad so dark quiet rooms are best for me

OMG. You just don't described what I going through.

Sorry Denny. It sounds like you have a lot to deal with. Sending you prayers and hugs.

The contusion of my brain resulted from a head-on automobile accident in 1975. The amnesia improved over the years but I occasionally have trouble with vocabulary recall, especially when tired. Severe double vision has improved somewhat after a total of 6 eye muscle surgeries, I have pretty good functional vision but read only with one eye at a time. The normal visual fusion reflex is gone and with it is stereoscopic, binocular vision. Still I completed a Master of Science degree in 1988 and will retire from a profession as a dietitian in a few years. I couldn't fly a plane but I did ride a motorcycle for years and still ride a bicycle and drive. I'm happily married to a nurse practitioner and I'm doing alright.

Hi
Am 31 and i had my concussion almost a year ago. Somebody hit me on my head i cant recall who it is. I had black out for more than 2 1/5 hr. when i woke up i was totally disoriented. I went to the doctor though they discharged me saying i have to rest after MRI and CT scans but the left part from my breast down is till now slightly numb. No headaches, at list non that i can remember but my eyes were seeing individually for the first week. My right hand and leg was very weak that i could not raise my hand and walking was hard that i have to walk slowly and make small steps else i will fall and my left ear was ringing really hard. I could not speak and make any sound loud. But it has all reduced now slowly, my ear still rings but not like before, i can speak just few words. I limb while walking now and my arm is still week i have to apply force or strength to do things and i my fingers shakes too. I want to know, am i alone on this? how long will it take me and will any of above mentioned symptom be permanent?

How long did yalls last for before y'all healed?

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