Life after Tbi

[Jareel10]

On August 14th of last year I was involved in a bad car accident and suffered a traumatic brain injury. I was wondering if anyone could tell me things that they are still dealing with because of the brain injury and what things they did to adjust to it. I was also wondering does it get better overtime or do I basically just have to adjust to things. I was told that this was an amazing group and that I could receive good advice.

[Marnie22]

Hi and welcome! I can't write more now as I am unwell following a bad reaction to antibiotics, but you will hopefully find lots of support and advice here. 👍🌼

[cat3]

Hi Jareel ; welcome to the forum. The first 'anniversary' of a brain injury has special significance for many folk. It's easy to view the first year as a milestone and feel disturbed by poor levels of progress or fear of the future.

My consultant warned me of a very different life ahead and how acceptance of the new me would give me so much more control than fighting for the 'normality' of the past and failing.

Nevertheless it's instinctive to be the best we can be and, like many others, I spent a couple of years feeling exhausted from keeping pace with the past before acknowledging my new limitations and making compromises.

My life is very different now, 9 years on. I doubt that any amount of advice is as persuasive as living through the personal transition and learning (over & over) the consequences of trial & error and pushing too hard.

What still works best for me is being amongst people here who get me, and the feelings of camaraderie and reassurance. My family are amazing but folk here have become family too ! Stay around Jareel and talk some more....

See you later, Cat x 😐

[Jareel10]

I definitely appreciate the reply. It’ll be a year for me next month. I’ve improved so much physically and it’s still things that I work on. What bothers me the most is the memory and concentration issues and the accident I was in also caused me to start having seizures.

I’m so thankful to be here but Things are so different for me now and it just feels like my life been put on pause. I basically can’t do none of the things I use to do, haven’t been released to drive yet either and it’s so annoying.

Having that good support system definitely means a lot. It kind of bothers me a little because no one ever stops to ask how I’m doing and I can tell from the replies that I have received that joining this group could have been one of the best decisions I could have made.

[Cornishboxer2]

Hi Jareel,Welcome to the group. I am just over two years since my fall off a ladder, head first. I can only speak from my own experience and what I have picked up from the many kind people on here.

For me it has been a journey and no doubt it has so far for you too, I think gradually understanding your symptoms however long that may rake is helpful as you then know where to put them in terms of what you can or cannot do about them. Acceptance is definitely key it seems. I have been lucky to take part over Zoom in a group online run by my local Neuro rehab unit. Hearing other people’s stories definitely has given me perspective. Like you I lost my driving licence and I understand that frustration. Taking time to plan what you can do in a day and having the odd one you don’t have a plan for is all part of it too. It’s a balance between being good to yourself and having things that motivate you. I’m warbling on here aren’t I? That’s part of me now too so I guess I will end by wishing you the very best for the future. Be kind to yourself and try to make connections with other people that make you feel comfortable and hopeful. Have a good weekend!

[Seychelles101]

Hi Jareel, I had my accident 5,5 years ago. I’d say that the first two years were the hardest, in terms of symptoms, going through rehabilitation and trying to get back to doing some type of work. I had a mild TBI and my main areas of lasting challenge were around cognitive/executive functioning, besides the fatigue. In Utah, the US, there’s a clinic called “Cognitive FX” that specializes in helping people with mild TBI’s. After 4,5 years and having had a setback with my recovery, my rehabilitation center suggested I try Cognitive FX. It is expensive and 100% self-funding, but I spoke to a couple of people before I went and earlier this year managed to get an exemption to travel there. Speaking from personal experience only, the treatment’s been a game changer. I would go even as far as to claim that I no longer have a brain injury. The treatment doesn’t work for everyone, but they claim that at least most people report a significant reduction in symptoms. My cognitive fatigue lifted during treatment. I live in Holland and quite a few famous people had also been (sports/media people) and there have been documentaries and news articles done on the clinic, so I knew it wasn’t a Mickey Mouse center, nor a scam. Take a look if you’re interested. After 4,5 years I had pretty much accepted my partial disability, but wanted to try anything and everything first. Good luck 🍀

[FlowerPower62 in reply to Seychelles101]

Would you say this centre is just for mild TBIs, or can they help those who had more severe ones too?

[Painting-girl in reply to Seychelles101]

It's interesting that you got benefit from their rehab strategies Seychelles - I've read some of it on the web. I think one of their strategies is the work that John Leddy does at Buffalo university with exercise intolerance in concussed athletes using the Buffalo treadmill protocol. My physio here in London worked with that too. What sort of rehab did they provide?

Here's some links to John Leddy and his work for info -

concussion.org/news/impact-...

ncbi.nlm.nih.gov/pmc/articl...

medicine.buffalo.edu/facult...

Jareel10

FlowerPower62

Leaf100

[Leaf100]

Hi Jareel10I am 12 years from injury date.

Everyone is different.

You are still in the healing time frame , after about 3 years it slows down. You still do make progress, just slower.

I would say at 3 years out I was still on a mission to get well enough to work, it took me a long time to realize and accept that was not going to happen.

There are lots of different therapies out there and to some degree you have to try them and then get an idea of the sorts that work for you.

Sometimes your work insurance or other more or less decides because if you do not do it you lose your income. So, having a good doctor can be key.

Some therapies work for some and not others.

I am afraid there are no easy answers.

It took me a long time to be aware of some of the things that work differently now and I am still figuring it out. I even laugh about it now! Sometines. Imagine that.

I would say getting into programs where they give info on possible symptoms and you talk them over in a group has been the most helpful for me - coping strategies also come up. I am relieved to know there are some symptoms I do not have.

It all depends on where the injury is and what skills you had before and for how long. I started driving when I was a child, for example, (my Dad literally taught me what a brake was and how to use it as soon as I could crawl and understood - 'sit on it') so driving is in my long term memory and my long term muscle memory. Even when I have wild tremors - sit me behind a wheel and they all stop. For this I am grateful. (Of course it means I can drive places but not necessarily get out of the car... ok another thing to sort out - being new places.) (My Dad knew how to drive by the time he was 9 so just started with bits and pieces...

I had a heck of a time learning to write again, now sometimes I can and sometimes I can't - but I can always type - learned in high school and I used a computer daily in life before.

I mention these things to show - expect the unexpected.

As for adjusting, I have learned to take one day at a time. Sometimes one moment at a time. You find things that are hard but not so hard you are hitting a wall, and you do them persistently. Either you will have a therapist or find them on your own. Persistence may mean 3 minutes today and three minutes tomorrow, and 2 months from now maybe 3 minutes is still your max or maybe you are at 4.. or 10.... It may mean setting an alarm so you do not overcook yourself. It may mean planning to do that thing before nap time.

Fatigue is pretty common and disrupted sleep is common. You will get lots of advice but basically sleep whenever you can because sleep is your friend- healing is happening during it and on a deep level sometimes.

Resting is also helpful - not resting doing something but resting doing nothing, laying down. No music. Get interested in the sounds where you are, if they triggering you try noise cancelling ear buds. Sounds like wind blowing neighbour pulling into to driveaway bird singing etc.

When you mind goes to how things were before, remind yourself 'right here right now I am ok' It is really easy to get down thinking about how things used to be. It is much more empowering to note your successes, no matter how small, and think wow I did that today! Even if that thing is taking a successful nap. You had healing time! Wow! Yes, faking enthusiasm is acceptable. After a while you might believe it. Or, maybe not. But it beats crying into your coffee cup. Speaking of which... caffeine consumption is not recommended.

This is not that easy because our memory is alway looking for more, for the next thing. So, for me I have to remind myself, for example, all the ways I tried to write and how long it took - by the way I found a smooth fountain pen much easier than a ball point/biro - you can get fat fountain pens and move more from the shoulder.

So, you do better if you get curious and treat yourself like a science experiment almost. Failure is no longer on the menu - it was just something you tried that did not work today - but hey, maybe tomorrow.

Learning to be more mindful and really observe what you do as you do it helps. I still work on this. When overwhelmed I can lose pretty much anything . Sometimes in plain sight. My brain will not see it until it is less tired and decides it will process it.

My experience has been the brain gives you windows of opportunity to do things. So, you decide on a task. Some time later the brain will process it. It may be two weeks later or two months later. But, when the opportunity is there, use it. It may not come around again for another two weeks. In other words, service is slow and at the whim of how your pal, your brain, works. Just appreciate how hard it is working behind the scenes and be kind.

I find myself having t o practise self forgiveness a lot. So I like to write down things I did get done or things I did succeed at to remind myself I am making progress and I can do things. And I got it done even if not perfectly. And I survived some process of the hoop jumper set.

There is always someone worse off than you. Take a look at a documentary on orphanages in Bulgaria or what dialysis patients go through. Comparitivley speaking this can help you feel lucky. As long as you can keep it in mind your frustrations in life are valid and your feelings need your acceptance. It is just one tool that may help get you through, depending in how you feel.

Basically accepting yourself is the key. Like learning a new friend. You are somehow the same you in there even if a lot about you has changed. You are ok, really you are - it is just scary when things are so different, and what you relied on and expected are different, but really trust me you are ok. Different is ok.

Suicidal ideation is not uncommon, do get help with that immediately if it happens - a bump in the road not an answer because you will find things that are worth being here for, trust me you will.

The short answer is yes thing get better over time and yes you have to adjust and accept and yes you also have to not accept. Because what happens when no one knows. You will accept and then find later trying again later is ok, because healing has happened and hey, progress is suddenly possible.

Welcome to the land of uncertainty.

We are all quirky in somewhat similar but also unique ways. So do not worry, you fit here.

[Jareel10 in reply to Leaf100]

Wow. Thank you so much for that reply. It means so much to me to be apart of this group. The answers that everyone is giving me are so helpful. I really do appreciate every single person here and just reading the replies give me so much more hope.

[Painting-girl]

Hi Jareel, As Leaf and others said so well, it's a mixture of acceptance and improvement - and finding good strategies to take the pressure off having to remember everything.

I use my mobile diary and set alarms for everything, so it's almost second nature now - and oddly it makes me better at remembering people's birthdays than I've ever been in my life... Plus I have to plan more in advance so that I don't trigger off bad fatigue ( doesn't work 100% of the time by any means, but stuff like resting up before a family event for example, can mean I'm less likely to have a bad fatigue crash afterwards) quite a bit of an adjustment to my previous (reasonably successful) 'leave everything to the last minute' approach to life though 😊

I had some good rehab on my firm's medical insurance here in the UK, which gave me a decent amount of recovery, when mine had stalled (but not completely back to where I was previously by any means) so there are specialists here both private and NHS, it's just tracking them down.

Theo Farley my concussion specialist physio was just fantastic

puresportsmed.com/team/theo...

myhealthspecialist.com/spec...

The Headway helpline are great for informed emotional and practical support too 0808 800 2244.

I'm ( slowly) reading a great book someone recommended on here, called Mindfulness and Stroke a personal perspective by Jodi Mardula, clearly co-written with her neuropsychologist Frances Vaughan. The section written by Frances on the effects of brain injury on our functioning and useful strategies to adopt for the different types of 'new functioning' we find ourselves with, is so clearly and simply put - quite brilliant to read no matter what your brain injury. I'd recommend it to everyone and their families.

My neuropsychologist was absolutely great at helping me develop strategies to manage my fatigue and get it down to the point where it's more manageable. Not pushing on through fatigue is key.

Glad you've joined the forum - as you can see, there's some great people on here.

[sopranoA]

Hi Jareel, Sorry to hear about your accident. I hope your recovery is going well. I'm 8 years now from my car accident and TBI and still have challenges. However, things do get better and easier over time. Are you seeing a neuropsych and a psychologist? It's so important to have a good group of healers and specialists. Here are some tips: Take a break from activities after 45 min, make lists, try to go to bed and wake up at the same time every day, vitamin D and high complex vitamin B supplements can help a lot with fatigue, 20 min naps in the day can help, pace yourself, take one day off and one day on if you can, limit or avoid alcohol, try an anti-inflammatory diet as after trauma there can be inflammation in the brain and body, and take it one day at a time. There is a facebook group by psychologist Dr. James Zender connected to his book, Recovering From Your Car Accident, that you might find helpful! Be extra kind and gentle with yourself and know that healing is possible and there are good days and bad!