Those of you who have TBI, have you been able to return to work or are able to drive again? If so, how long did it take for you to return to these? It’s been almost a year since my son suffered his fall resulting in a TBI. We are in the middle of “ALL” these disability forms, etc. They want to know how long he will be disabled. DUH, we would like to know that too. No one knows! Plus his neurologist has told him he could start driving again, but that his family should help him make that decision. He has lost all peripheral vision in his left eye plus the numerous other side effects of TBI. As his mother, I’m afraid his reaction time might not be fast enough to drive just yet. Please share your thoughts and suggestions with me. Prayers for all of you who suffer from TBI. Thanks for your help!
I have been a survivor for 10 plus years…Never returned to work…I have never driven again…the first few early years I was never able to pass the tests to be able to drive( like reflex and attention )…I even went to the DMV with my attorney, and when I was to sign where I attested to not having any cognitive problems…I would of been lying had I signed it…I walked out crying…so have never drove again…so I walk everywhere or take my bus…Buses out here are very minimal but I am so thankful to have one!
Thank u for sharing.
Some factors in the recovery of a traumatic brain injury age and level of impact and where the brain was injured. So I think that maybe one day, maybe I might be able to drive again under certain circumstances. Like if I always remain below 30 miles per hour. I after three years of having my brain injury, took a test drive in a very familiar car that was dressed like one I learned to drive in and drove in for many years before my brain injury, and I was able to drive rode a few feet and turn around and shift the gears but I could feel that I was very very close to specially when I tried to find the gear and then tried to reverse because I was so afraid the car would jump out of gear and that I would get shocked and have a panic attack control so I’m definitely not ready yet, but maybe one day don’t lose hope but don’t rush it
Hey Debbie,
Every TBI is different, so to be saying that my injury compares to anybody else’s is impossible. My initial injury was 40+ years ago, as a child. It was all written off as a ‘bump on the head’, since then, well, for a while things travelled along as ‘normal’. There were behavioural issues but they were simply put down to me being “A shit of a kid”. Then 20yr ago, I’m driving down the road and the lights went out, I couldn’t see. I had a scan and they found things weren’t normal at all, I was told I needed surgery. Thinking this surgery would ‘fix’ my issues, I had the surgery and things have not been settled since. After the first surgery I had many issues. I am not a patient person when it comes to my expectations of self. It used to be that if I wanted to do something I did it, post surgery this just wasn’t possible and instead of resolving issues, the surgeries presented a whole new range of symptoms. I needed to learn a whole new way to manage, which I did, but it took a couple of years to get back to ‘normal’.
Then 4yr ago I had another incident, which resulted in 3 further neurosurgeries. Each one has knocked me harder and harder. I have attempted to push myself to recover, but the more I push the more my body pushes back. Last year the medicos decided I needed yet another operation and that surgery has finally convinced me I simply can’t do as before and probably never will. They wanted to take my driver’s license off me, I begged them not to and lucky for me that my wife can drive 90% of the time and I was allowed to retain it.
The Dr’s have told me this is about as good as it’s going to get. I’ll never work again.
So now my questions to self are all ‘what if…?’ What if I hadn’t pushed so hard? What if I’d given myself time to recover? 'what if…? 'what if…? and 'what if…?
The frustration is MASSIVE and I often blame self.
I too have had to apply for Disability and all the ‘FUN’ (or another word starting with ‘F’) that has been, but I did finally receive it. All I can recommend here is to check, re-check and then re-check again that you have all of the relevant paperwork/forms/reports. Miss one piece of paper and they will send you away until it is completed correctly.
So that’s it, that’s me. I am slowly coming to terms with the fact I’ll never work again and because my work was part of my identity, who I was, this has caused me HUGE conflict and although I am married and still try to be that ‘strong male’, but my ‘strong male’ masquerade is falling apart. Only this week my wife mentioned that my ‘masks’ are not working and she can see the stresses that I’ve been trying to hide.
All I can say in regard to your son (and please do not take this as condescending) is to support him, be there for him in his time of need. No two Brain Injuries are the same, nor have the same affect on an individual. There may be times of frustration, there may be times of despair, hey, he may come through this with very little ill effect. But for your own sanity, just be aware of the ‘worst case scenarios’. If you are prepared for the worst then anything less is a bonus. I wasn’t prepared for the worst and beat myself (metaphorically) for my predicament everyday.
I wish you the very best for you and your son. We all know the battles he has faced and the battles yet to come. Just know you are not alone, we are here if you need to chat.
Merl
Honestly a year in is pretty early. I didn’t level out at all until my third year at the end. I can technically drive but I feel it wouldn’t be safe. Plus just being in the car gives me a migraine let alone trying to drive. I’m on my 4th year. I can’t return to work. So far I’ve been told volunteering is the very best I could do.
Good luck with your son.
Sometimes you have to accept limitations but dang it’s hard and dang it takes time.
It’s good he has you for support with you willing to post on here
Thank you for sharing.
Thank you Merl. Love your comment “No two brain injuries are the same”! Cause they are NOT! But ALL this paperwork seems to think so!!! It’s suppose to be easy answers, yes he can drive on this date, yes he can return to work on this date, etc. God is the only One who knows the answer to these questions. Sure wish everyone else would understand that WE DON’T KNOW!
I’m printing off these replies and showing them to his doctor next month. Evidently his neurosurgeon doesn’t comprehend the effects of TBI cause after 7 months she told him it was okay to drive!!! Seriously, this doctor sees him a couple of times for a few minutes each time and says he can drive. Then when I shared my concerns, the doctor told my son it was probably best to listen to his family. I’m so proud of my son, he hasn’t given up and has a positive out look on life and is VERY THANKFUL that he’s doing as well as he is. The doctor even told him what he didn’t get back in one year, he wouldn’t get back! So glad to hear that you are still improving after 3 years.
Ohh, no it’s not. They try to make it so difficult that eventually you throw your hands in the air and say “ohh this is all to hard” and give up. And that’s what they want. I tried, initially, to do it all myself. They had me jumping through every hoop and loop possible. I was so exhausted by the processes and I was ready to give up. I then saw an advert on TV for a law firm on a “no win, no fee” basis, so I engaged them. This was the best thing I could have done. Sure it cost $$$$$ but it saved me the head screws of dealing with the bureaucracy. I had to attend 2 medical appointments but other than that the lawyers dealt with it all, AND (this is a BIG and) it saved what little sanity I had left.
As for the neurosurgeons, hmmmmm, their textbook theories are great, but let’s face it, they are all theoretical. In scientific theory A+B=C, there is no flexibility in the theory. My surgeries have been to ‘fix’ an issue, but the damage caused by the surgeries has thrown up a whole new set of issues. So add these issues to the previous issues and the hurdles are MASSIVE. I was told by a dr “…they have operated, they have fixed…” but if this is fixed, then I’m another word starting with ‘F’. So although they may say “7months is OK to drive” it all depends on the individual and not just the theory.
Merl
Hi Debbie,
I am truly sorry to hear about your son, but it was like reading about myself. My injury was in Feb. 2016 and it also is the vision in my left eye. Not being able to drive for me has been a challenge. My freedom feels like it has been taken away. I lost my health insurance in Sept. of last year so I have not been able to receive any more medical care/tests. However, in May of last year I did go to a neurologist and when I walked out I didn’t know any more than when I walked in. Although he did say “driving is up to when you feel that you can.” And he wanted me to get put on Ritalin and antidepressants. I refused the medications so I had to find another neurologist, and in the meantime lost the insurance. I recently was accepted into our local Vocational Rehabilitation, have you taken your son to your local VocRehab? They have wonderful programs and counselors…you can look up the website and start from there…let me know how things go, and never give up on prayers and faith!
Debbie
Each TBI is different and in this case you son did not have much driving experience to begin with. Have you thought about enrolling him in a driving school…that is assuming he can walk and not fall down and is not nautious all the time. My last TBI was 20 years ago and I was driving and riding motorcycles at the time. I still drive and ride motorcycles BUT I drive and ride when I feel well enough to do it which means that I have to arrange my appontments so that I can have some dizzy time and still get there and back home by myself. I drive or ride everyplace I need to go. I had to drive with my dad to pick up a car last year so I arranged the trip to drive from pitstop to pitstop about an hour to hour and a half at a time. We had no problems getting the car and driving back but we arranged the trip to have an overnight stay just a few miles from the carlot. If I lose the ability to drive one of my Studebakers or ride one of my vintage bikes I might as well be dead. Dial a ride sure will not pick me up to go to the local gunshop or to get groceries.
HI Debbie, SUCH an important question about the driving!
In my case, after each of two TBIs, I was fortunate that my doctor did not take my license, but prohibited me from driving for 5-6 months, then had my driving monitored by the Occupational Therapists each time before approving a return to driving. Even upon return to driving, I was only able to drive up to 7 km. This range did not increase for a very, very long time! Yesterday was 4 years since last TBI and I am able to drive for up to 1 hour, usually because I rest up a day before any longer drive such as this. I also leave time for a rest of 20 minutes in my car, eyes closed and no radio or visual stimuli upon arrival before proceeding with my errand (these ‘brain breaks’ are recommended by the neurophysiotherapist) . The bottom line, you are wise to go slow and gradually help your son to safely explore his growing independence. It is bloody frustrating, but worth it. Oh, and I had vestibular and eye testing before returning to driving. Hope this helps? If your son hasn’t been taught about “brain breaks”, feel free to ask me. Very important! Cheers
Hi again, I am so very sorry to hear that a doctor was so blunt about saying there was a ‘one year’ use it or lose it! I was told something similar when I lost my career which I loved. Since then, I have met so many TBI survivors and their families who have not stopped finding ways to enhance recovery. It is such a fine line between trying to adapt to a new way of being, and trying to stay motivated to recover as much function as possible! having a caring family member who continues to search for supports has been the most important factor I have seen in the surprising success of some TBI survivors who learned to pace themselves, but not get complacent about working on recovery strategies etc. A few inspirational stories I am aware of that might interest him; Kevin Pearce who was a young American snowboarder and the Love Your Brain videos about him available on YouTube, also the movie CrashReel; for you, the story of my friend Michael Coss who was injured at 38 and was told he would never walk or talk and has since written a book, public speaks, raises funds for children with TBI and started a foundation… He is walking now too and you can hardly shut him up! Smile. These are higher profile examples, but Many in my brain injury support group have gradually returned to driving, some not. I firmly believe in Neuroplasticity… Like so many, I do much more now than after my first year, though it takes the patience of a saint. I am glad your son has your support. Keep up the good work!
“No two injuries the same”… SO true!!!
First choose a doctor to be your advocate dealing with the insurance company. You aren’t a MD, right? So they can do their part while you do yours (caregiver and document manager and more). Yes you gotta deal with the insurance people but the medical stuff isn’t all you.
Second realize that everyone is under-assessing his ability to drive including him. Everybody is happy for his recovery and they should be! Now is the time to be more cautious for two good reasons. #1 if he isn’t OK with “flooding” then driving isn’t the time to learn about it. #2 is is a billion times easier for the insurance company to let him start small and do more. If he starts doing more and reducing what he does to less then be prepared for a battle.
Be super cautious and conservative right now. Sounds like is rocking which is great. Pull the reins back as hard as you can though because it is really hard to slow down the wagons once it gets up to full speed.
I am a survivor over 20 years post. I tried to return to work early on, because i was cognitively functional, and since i had had a desk job, assumed my physical deficits didn’t matter. If my handicaps had only been visible, i would have been, and i tried it. Within an hour, I recognized cognitive deficits were there, and physical went beyond my visible handicap. Don’t forget, brain injuries affect more than the body, and the handicaps are not always physically visible. I am not saying you’re son i is less than he was, just that he is different. Just because he looks like he aleway did, and seems no different may only mean he is a good actor. Don’t get me wrong, he is still the same person he always was, but his connections have changed, is how I describe it. He appears to be the same person, may even feel like it, but feelings and appearance are often not reality overall. He is stil your son, that wil never change, but he is, in many ways, a different person. It took me over 20 years to accept that I am not who I used to be, and to learn to like this me longer. Now I know that I am still me inside, but my visible self/what others know and see has changed. My parents recognized it, but I’m not sure they realize I will never be who I used to be.It. It’s takes people who love you longer to accept the new you. I still don’t drive. I can/am physically capable, and remember how, but, and here come the invisible deficits, I quickly realized my reaction-time was too slow for safety. Don’t push/try to convince your son,listen to the doctors. It took me trying to convince me, so trying may be necessary, and he may drive, if he wants, I hope it works out.