#BrainQA: Q&A to bring brain injury survivors together and to raise brain injury awareness. Every Monday at 8pm (UK time) on facebook, twitter and instagram

The following answers are users from facebook, twitter and instagram, thank you everyone for answering!

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 What’s improved since the early days of your brain injury?

‘I can read! I can (usually) grocery shop! And, I’m (usually) not confused to the point of crying! Yassss!’

‘I can read now. I have gone back to work half+ time. I am helping people. I am proud.’

‘My understanding of emotions, emotional wellbeing (even though I don’t sound like it often), plus a greater understanding and compassion for those suffering from mental illnesses, as I’ve met a lot of them through hospital stays when I was having thoughts of ending my life.’

‘ can swallow food, hold a pen or a pencil. I can speak and recognize my own voice, and my stuttering has all but disappeared. I can walk unaided 99% of the time. I can sleep, I’m in control of my emotions for the most part.’

‘My knowledge of symptoms, and things I was going through that I did not understand before my accident.’

‘My SIL could not do anything for the first several months, and had to be lifted from bed to wheelchair with a machine! Now, he walks with a cane and does all his own personal care ?’

‘The superficial scarring.’

‘My daughters memory and her ability to keep her words in order, huge improvement!’

‘Cognition, fatigue, psychological, some physical’

‘My memory and my planning ability’

‘Speech, walking, brain capacity.’

‘Absolutely everything. Don’t be motivated to get better, be driven.’

‘My ability to read, to be more in control of my emotional lability and executive functioning, my fatigue has improved sooo much and my general ability to cope with life and stimulus. Its been a looong journey over 7 years but I’m so stoked that things have improved more than I ever thought they could have! ?’

‘It has been 7 years. Built up my faith my spirit my body. En route to build up my mind’

‘Memory somewhat’

‘I had to retake drivers ed at 51. but I can drive’

‘I’ve gotten through my “Lethargic” state. When I wake up in the morning, I don’t want to go back to bed anymore.‘

‘Everything’

‘My ways of Compensating for my Memory Loss. Such as putting lots of reminders in my phone.’

‘Most stuff. Walking, talking, fitness and energy levels, concerntration and oddly, my eyesight.
What hasn’t is my hearing, and when I’m tired or stressed my brain shuts down and I can’t think anymore, and then stutter and also cannot retain information.’

‘Everything!’

‘Can have a shower without a hour nap after.’

‘Mobility and read a lot more. I use to love reading now get exhausted after 3 pages’

‘My recovery time has given my husband and me more time together. We have gotten to know each other all over again.’

‘ I got a high school diploma’

‘This July will be 20 years since my TBI and I am just starting to regain small amounts of my sense of smell.’

‘Short term memory’

‘Patience’

‘Well when I left the hospital I was 29 and they said I had the mentality of a 14 year old, I feel I have matured, others may disagree ?? that was 17 years ago’

‘My memory and ability to do to things that I couldn’t do’

‘I can move now’

‘Canada is still in the dark ages. I have only one doc that openly admits he knows almost nothing. the rest just think they know something’

‘Everything’

‘Absolutely everything is better since my injury, EXCEPT my happiness and optimism, which are considerably worse. It makes NO SENSE at all, but I know folks here can relate.’

‘Everything’

‘7 1/2 years later everything’

‘My ability to function and adapt. I still find it difficult to recall what I dis yesterday. Coping is hard and being where I know I don’t belong makes it especially more challenging’

‘Everything!!! It was 45 years ago and I have no limits!!’

‘Everything. I’m 11 months out and early on I would only be able to talk a few words, was using a walker, couldn’t drive, could barely feed or shower myself. Now, I’m back to independent! Driving, talking non-stop, thinking and speaking more clearly than ever after some med adjustments and 6 months of speech therapy… And obviously A LOT of time with God. I’m 100% a different person, but I’m in love with the new Michelle ❤ ‘

*** Don’t get me wrong, I still have plenty of deficits but I choose too focus my attention and energy on the positives and things I’ve overcome!’

‘Regained left-side + walk again. Both things allowing me to do much more.’

‘So much has improved (speaking, walking, moving, some memory, some hope. But some things have gotten worse. I already had epilepsy before the injuries…now after my injuries those issues are so much worse that I am trying new meds and surgery to get them under control.’

‘My headaches and frequency improved, hallucinations stopped, memory went from gaping black holes-to awkward recall difficulty-to barely noticeable, increased motivation, decreased depression, reduced anxiety, better emotional/irritability control… still back and forth with insomnia & nerve pain.’

‘Everything has improved. Some days still suck, but they are better than…’

‘Speech! I don’t have issues talking or processing word anymore (minus occasional flare up). I can listen to music and am able to follow along to lyrics and sing to them. Something i couldnt do in beginning. Stuttering and recalling word i need much improved. I can order my own food at a restaurant again!
Also, Not falling left anymore. Dizziness and balance are a lot better. Sensitivity to light has improved but still have it. Also just finally getting migraines under control with medical botox.’

‘Outlook on life, other people and the Lord.’

‘My outlook on life. More grateful for the little things, finding true friends and a greater love and appreciation of my family.’

‘My appreciation of just how fragile life is in all of its forms is and what a gift that has been given to all of us. Please do not waste it! ‘

‘My relationship with God’

‘Had to relearn how to walk. Can drive and have a full time job. I still cannot smell or taste and never will, again. Olfactory nerves were severed, they showed me on my MRI.’

‘I can cook somewhat again, I re learned to drive but don’t drive much.’

‘Memory’

‘I think God for the encouragement this site has been as people have shared’

‘My double vision has gone, I can walk using a stick, shower independently, use the stairs, get into bed unaided, sleep on my side (my body was smashed too) cook, go out for coffee with friends, speak, live without hallucinations…………on the downside my sense of taste has gone!’

‘Every thing x’

‘Vertigo, balance’

‘The rage issues I had got better, and my concentration/focus is pretty much back to normal.
2.5 years post TBI’

‘Vertigo is (mostly) gone.’

‘My migraines!

‘My patience’

‘Perspective – I went from a person who saw my glass 1/2 empty & wondering how others who had their world turned upside down could perceive their glass to be 1/2 full —- to feeling blessed that I possessed a glass’

‘My entire life’

‘Feeling more positive!’

‘My falling over’

‘Calmness, patient, speech, walk, listen, keep my opinions to myself, be responsible, do my therapies, time management follow up on my Drs appointment, being so grateful to be alive’

‘My memory is getting a bit better at times’

‘Anger issues with tantrums!’

‘ I don’t have to worry about making plans with friends. Most people walked away when I needed them the most’

‘My husband is less mean to me’

‘Accepting the new normal’

‘My night terrors are not as bad. I don’t repeat myself terribly like I used too!!’

‘My walking. Although I still use my cane and wear my AFO, my walking technique and speed have improved.’

‘My family can finally look after themselves. Brothers, sisters, parents . . . and I’m the one who was injured’

‘I’m still getting used to it all. Had my 1st mri scan today since my operation get results next week. I don’t know what to wish for.’

‘Tolerance to light, balance and headaches (thanks to botox and meds)’

‘My son had tube feeding for the first four years. He now eats and drinks normally, although a bit slower than the rest of us. He also started riding a bicycle again last summer, seven years post injury, in spite of the fact that he cannot walk. Weird, I know.’

‘Nada. Im only 8 months out. My life is so stressful with my LCB spouse that its hard. However, the son living with me has gone to be with his brother so I am not stressed by him. Cant drive. Cant work. Memory hit and miss. Speech good if I am not anxious. Eye still wonky. Still loved by God.

‘I can usually prevent myself from getting over stimulated! I can cook some now!’

‘Not enough’

‘My walking, right side uses, speech, writing, emotion stronger’

‘I’m still waiting on improvements… I know they’re coming though…’

‘My vision is better I still go burry but not like after where I had no depth perception and couldn’t even handle seeing while moving. My nausea isn’t as bad, my memory is a little better unfortunately some symptoms got worse too but I hold onto the things that have gotten better. I can drive now when before I couldn’t I can’t drive for long without resting but I can get my baby to school and get us to appointments’

‘Speech, co-ordination, speed of processing, hearing, sight and balance (a little bit)’

‘  can watch TV & ride in a car without getting nauseous. I can read regular sized print with my glasses on. I can talk clearly, finding the right words most of the time.’

‘I’ve recovered most of the use of my once paralysed left leg’

‘ Walking, talking…’

‘I don’t feel like I have the flu all the time. Fatigue is better, but not gone.’

‘On 26 June 2019 I will celebrate my 40 year post TBI Anniversary and other than some pain I still feel in my left leg because of all the operations i have had, I am married to another TBI Survivor and living in the state of Florida. When I had the accident I was 19 and in the Army stationed in Colorado Springs, CO. – but again I hurt and have pain every day but as long as I hurt I know I am alive!!’

‘Speech, focus’

‘I’m not as belligerent… talking is easier’

‘I can get on an escalator without falling. And it doesn’t take me dithering about for hours before making that giant step forward.’

‘TBH. I don’t know? Maybe because mine is relatively recent..?’

‘Recovery Evolution!’

‘Speech facial structure en shoulder joint showing sign of improvement 18months post’

‘Really? My ability to lie to myself that I have accepted creating the new me. Sarcasm intended. After reading all of your posts it made me recall quite a few improvements I’ve actually made too and had forgotten. Thanks for lifting my attitude.’

‘6 years in – acceptance and pacing myself…most days ?x’

‘Top of my list so far… I can pee standing up again! ‘

‘And my realization on how little doctors know or will discuss about tbi, my doctor won’t even say the words .’

‘Word finding, memory, getting distracted, processing although im still trying to find a balance with that… coping with stimulus’

‘Nothing at all except my pill tolerance’

‘I STILL DO MY OWN COOKING, I PARK WHERE I CAN SEE AND FIND THE CAR EASIER, I CAN MANAGE MY OWN BILLS AND GROCERY SHOPPING, MORE patience with myself..’

‘Loosing her ways’

‘I had to learn how to walk again, but then ran track in college. No longer the constant head pain. Still get dizzy easily. After the 6 months, I was almost back to previous mental abilities, except for certain areas.’

‘Vertigo/nausea/dizzy spells and falling’

‘I have my speech back. Three years in and still a multitude of symptoms. Too many to mention.’

‘I’m one year out, and things are still getting worse rather than better. Balance issues and headaches are getting worse. I’m hoping to hit a peak soon and things start to get better.’

‘It’s been a work in progress, but knowing the limits that my new brain has ??’

‘How to TRY to control my temper.’

‘Understanding of what’s going on, better physician to oversee the situation, less confusion, pain management if more effective’

‘My short term memory has improved (my long term memory was not effected as much, if at all). My speech is improving slooowly and my balance has improved but it still needs work. It has been a little over 3 years for me.’

‘Resilience’

‘The only thing that has improved since my TBI, is my acceptance of it.’

‘Honestly, whenever I have an issue with something NOW, I can’t tell if it’s something I already had trouble with, being on the autism spectrum, OR if it’s an effect of the brain injury. Apparently I’m good at over-analyzing too.’

‘I now have a valid drivers license.’

‘From understanding nothing…(and not being told of nothing, and even when I was told of something, it was all the wrong somethings)…to actually being treated to understand the full extent of my injury, at the time, a long term memory loss, short term memory loss, focusing what is said, memory de javu, time and place disorientation, impaired insight and judgement, distractibility, emotional gaiting, hemiparesis right hand side…’

‘Not a lot…’

‘Everything’

‘My independence ‘

‘Speech still needs work, but its better; memory improving but is the thing I need the most help with, emotions are a lot more in control, and Im seeing great improvements in organizing my life.’

‘My life for the most part’

‘More outgoing and less shy’

‘Less/ no filter.’

‘Vertigo, balance, memory, sleep.’

‘Memory, walking, skills with women’

‘Able to cope with stimulus, obsessive behaviours (looking for a certain item in my home I must have or no rest etc) have now become manageable or non existent I was diagnosed in 2010 & re-injured in 2012 most of not all of my “symptoms ” are now who I am & I have days when I laughing about my quirks & days were I am beyond overwhelmed yet I am finally at peace with the new me.’

‘Im 20 months out.’

‘I’m an old timer. i’m more interested to see what others say.’

‘I do not mean to be such a downer but every day is different and I learn new things about myself and being a brain injured man for all of his adult life is a lonely and tiring way to live. I have had people actually say “Oh I thought that you had died from your accident” What can you say to that?’

‘I can make hard boiled eggs using an electric pressure cooker.’

‘My tolerance levels, my understanding of myself and my injury.’

‘My TBI occurred in September of 2006. I was riding my motorcycle during a summer trip to Yellowstone Nat’l Park where I hit a deer who jumped onto I-90 near Livingston, Mt. I was wearing full protective gear, but received a massive TBI and some broken bones. I was totally confused after the accident so went to rehab at the Centre for Neural Skills located in Bakersfield, CA. I was there for 7-months and they were able to help me get my dysfunctional brain back to useful functioning again. Even after all that, I still had trouble with my cognitive thinking, so I applied the thinking of the many in the know and started using cannabis, which has brought me back to rational thinking. I have been good since then and highly recommend using cannabis for people who go through this.’

‘Speech! Walking! & most important learning that I am my own best advocate’

‘Now that I have a valid drivers license, I don’t have a vehicle. 20 years ago, I had 5-6 vehicles, but no license. And I HAVE had to re-take the drivers license exam, and the drive test. When my license got Revoked in 1994 because of my third DUI, I went 6 years without a license. But I had trucks! Now I have a license, but no truck. Driving is a piece of cake! I CAN DRIVE ANYTHING! 😀 Parallel Park on a dime! 😉 I can back a trailer. “Ollie The Big Truck” had a two speed rear end. I’ve driven it to the dump with a load of a “Torn Off Roof” close to 50 times! (And I DO USE ALL the gears.) I can drive a forklift, a snorkle lift, a gravely, a John Deere Tractor. I CAN DRIVE ANYTHING! I got that mastered. I want to FLY! :/’

‘I’ve discovered that having a microscopic memory is okay for most daily interactions, because most of it is blah, blah, blah, anyway. Lol’

‘My speech. Eyes(strabismus -operated – I look and see normal again!) I walk now, I talk and way better than at first, I can write and draw again, short term memory better, but Working memory still the same ? I can climb stairs!! Not good but I can!!! My temper (still bad but much better!) I can taste now! Not normal again but I can taste something (a taste for meat and a taste for vegetables, a taste for starch! Smell…I can smell about 5 things…but it’s getting better! Impulse control, being too honest (childlike) and other emotions still in progress! And I can sing again!! For nearly 3 years I could not and started getting the hang of it about 3 months ago!! Sleep…still working on that but O have pushed my fatigue levels to nearly normal!! Thank you for this…I tend to forget how far I have come in 2 and a half years!! Life is beautiful ❤’

‘I learned humility squared.’

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You can take part in #BrainQA on facebook, twitter or instagram every  Monday at 8pm (UK time)

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