Are your symtoms constant? Should we start calling brain injury a disease instead so that healthcare will start taking us more seriously?

Every doctor will tell you that your brain damage is permanent and unchanging, meaning you'll always have the same set of symptoms, if you had an IQ before of 120 and now after your injury it's 100, no amount of training will allow you to bridge that gap to your previous level. However, it's been my experience that I can have better days and very bad days. Can brain injuries really be explained as an isolated event with a predictable outcome? Wouldn't it be better to describe brain injury as a disease like MS is? I do not wake up every morning feeling predictably refreshed and alert, rather sometimes I wake up feeling very groggy and my brain feels swollen on one side and other times I feel stronger, but my level of consciousness/alertness is extremely variable. I don't know what causes this, it feels like when I was in hospital, except that was 13 years ago. The only way for me to wake up in this state is to do about 30 mins of spinning after which I feel more alert and probably would perform better on an IQ test than I would otherwise. Aside from that, first thing in the morning my speech is usually slurred, if I then practice reading a book aloud by the end of the day my speech will no longer be as slurred. Then if I withdraw and don't speak to anyone for a lengthy period, my speech production/articulacy will take a turn for the worse. What is going on here, surely we can't call brain injury a permanent phenomena. But neurons that have died aren't replaced, so what causes me to improve so rapidly in a day? More questions that answers here.

38 Replies

  • same with me, I'll stay linked in case you get the answers

  • Of course I'll divulge anything new information I gain with the "brain injury community". If we can't at least help each other then who will help us?

  • ohh good topic, i have certain unchanging aspects.

    but a lot depends on the day, i really struggle with cognitive linking of things (i dont know any other way to describe it) so if i am taxed my day gets harder

    so i guess external social things play a big part too

    a long with 2nd conditions such as depression, physical problems etc..

    but viewing it as an injury is a lot easier for me to make sense of it all

    but you raise some good points and i am eager to see what others think

  • Yes, I agree I have some unchanging aspects too like memory, speech pronunciation e.g. I have difficulty saying words with two same/similar sounding syllables that come one after the other like "the delay" "the" and "de" are similar sounding and if i'm already stressed I have trouble saying things fluently. That's one aspect that is more permanent. Another aspect that's more permanent is grasping/fine movements with my left hand and general weakness in the arm, but at the same time, if I work hard at grasping or do an activity that works out the hand/arm, i'll gain more control, on the other hand if I have a poor night's sleep, my hand will be weaker and sometimes feels numb, these are changing aspects. My thoughts are that we can't simply call it a case of lost neurons/connections, there's something else going on that isn't a permanent phenomena.

  • id agree but its finding doctors to listen not just write us of i no today im not same as yesterday less use of hand/arm it wasnt ok yesterday but worse today they say brain is on like electric current 1s thats damaged its gone dont totaly belive if they can put in a womans arm in switzerland eltrodes to give her use back of her hand 3 years later she regaind her sensation 2 there are thngs but no 1 will help ive tried my best to find clinic they did first lady 2009 its been done on others since id let them try on me1st lady broke her neck had very bad tbi on video on here i watched she looked well ok we all can look ok on different days it is hidden illnessif you do bit looking like i did it will come up came up as a newspaper report 1st then there was links to what where ect and videos im going 2 re find it got to be on as ive seen read it all we no its all experiments like coils in my head only been used just over 10 years here so they were tried on people before but your right it is changeing different days

  • good qustion but alhzeimrs is a brain diease no we have catosphopic injuries from which we can recever but never to the people e once were we sufferer disability mood swings depression and enormous trustration managing those changes for ones best life whilst impacting on others as little as posible is our focus sure its not easy and takes enormous amounts of what little enegy we have but we do whats the alternative death or hospital i know my choice

  • I've always thought that alzheimers is just like a brain injury in acceleration. What's more, brain injured are more prone to develop alzheimers, parkinsons disease later in life. Brain injured or not, we go through life accumulating damage to our brains and bodies, a brain injury just accelerates the damage and makes the effects of further small insults like drinking, etc. far more impactful to our brain health. I think we can't just talk about brain injury in isolation, that we have an injury and then recover what we can but not worsen. We have to start looking at the similarities we have with others with a form of brain disorder not just say he's got parkinsons disease and i'm brain injured, we both have a brain disease.

  • The brain is constantly changing. If it wasn't I would no longer be able to write or speak. After my SAH and stroke damage was done to the area of the brain deals with communication and writing. I worked constantly to remould that area to be able communicate again and yes it was exhausting. But i am firm believer in my brains ability to have plasticity! This is taken from a brain injury rehabilitation website:

    Brain plasticity—the ability of the brain to adapt and regenerate—is believed to explain the recovery of physical and cognitive functions of patients with traumatic brain injury.

    “The theory is that those neural pathways [needed for these repetitive activities] grow around the damaged area, these people can learn and the routines become second nature again.”

    Finding the right things to help with remoulding the brain is the key and that is what i suggest GP's need help with! Good luck remoulding.

  • I'm also a firm believer in brain plasticity, I have experienced enough improvements and declines over the years to know how plastic the brain can be. My own theory is that the injury causes loss of neurons and this places extra demands on the healthy neurons to cope with the loss but they can only make a limited number of connections which means once all connections are full, they have to disentangle and that means we lose the improvements, forget things we've learned,etc. Because we're brain injured and have less neurons, they have to disentangle/disconnect more often, so plasticity is both good and bad IMO, but i'm not an expert on this, i'm just talking from experience as a brain injury survivor.

    Can't agree with you more on your suggestions for GPs, they really are clueless about anything brain-related, not their fault true, things are changing fast however with an aging population and more and more survivors the healthcare systems is now witnessing brain disorders on an unprecidented scale, they have no choice but to take it more seriously.

    I really recommend that you try hyperbaric oxygen therapy, it has been shown to be highly beneficial for people with strokes, there's another thread on here and I've posted the article. If your GP is clueless about it, educate them.

  • you're welcome, what are you researching?

  • Hi i was reading the comments from Alicedenham and used her 'shorter' post in my notes. sorry!

    My research is my sanity, I was asked to do a Phd 11 years ago, I declined and thought 'I can put that one on the back burner' then 6 years ago I had acute viral encephalitis.

    I am using my writing and my love of life and research which is still so rich and boundless to connect me to the world.

    My interest at the moment is with us people so many years down the line, yet sill recovering.

    And after watching 'Brain Hospital' & Brain Doctors', I mean its fantastic that these programs are being broadcasted and awareness is growing but I would really like to get funding for a series documenting a 'progress report'. survival post TBI ABI PVS etc

    I really am a frustrated artist/writer and nothing I ever did before was ever conventional so now I am ready to campaign.

    I sit and research and write daily, its like a puzzle of life I am piecing together - I no longer separate my journal from my research as I have discovered profound links between the two and how the memory works.

    Now youve opened a can of worms! haha

  • I'm glad I could help even if indirectly. I know what you mean about writing, I have difficulties expressing myself vocally and really poor concentration, so I've turned to writing as an alternative form of expression, rather like a person with no arms uses their feet instead. I truly feel most conscious and myself when i'm writing. It's fustrating that we often judge people by their ability to express themselves vocally and cannot judge them instead by their inner thoughts.

  • Hey how about reading? I am into 2nd edition CG Jung

    the archetypes and the Collective Unconscious , now just like the Phd this was on the back burner on the bookcase, as it is a heavy book, but wow I believe this to be the best read ever! well its definitely worth having on your bookcase for that rainy day in your life.

    And has opened many new pathways in my knowledge in writing - your posts and questions are very inspiring please keep up the great work!! and re moulding and re sculpting of your mind x

  • Yes, very much into reading, although I often have to re-read paragraphs because I have the retention of a fish. I find that reading philosophy really challenges my thought process the most and takes me to my most conscious state. I think creative works be it art or music should be used by all brain injured as a tool to reshape our minds, more helpful that brain training games and IQ tests. We have to learn how to be more flexible and adaptive because our impairments will otherwise impede us, this is what creative works help us to do. It sounds like you're a psychologist or were, what great hands you're in then, we should all learn to become our own psychologists after injury.

  • ..and you are beginning to sound old for your years, i can imagine you as some old guru sitting in a cave on a hill top in India.

    The creative imagination is our most powerful tool and on my good days I do try my best to focus on this aspect of my life - and connecting with like minds - such as in this moment - is a good and positive feeling - thank you

  • Maybe because I wasn't afforded my youth and everything that comes with it. I grew up differently. It doesn't sound like I can compare myself with you, it doesn't sound like you had much damage.

  • which again demonstrates this point I am writing about in my research - our minds have met on here - and once we reached the realm of Jung and the spectrum of creativity in this life - comparisons and age and damage where no longer relevant to our discussion - in my view - I just want now to explore this research more in some way - i have to eat now!

  • Ok, you lost me there on the Jung!

  • sorry too much writing today and not enough thinking!

    It really is lovely to have found someone on here I can actually ramble on a bit with.

    I hope to catch up with you again sometime when I have had some rest. and am better prepared, as you challenge my mind in new ways and I would like to be able to do the same for you.


  • LOL

  • Do worms hold the secrets to longevity? #aging

  • Interesting article, but I still question whether it's the metabolic rate that's being affected since it's known that calorie restriction indirectly promotes longevity by reducing the metabolic rate (or does it?). If indeed the metabolic rate is behind it all then i'm not sure if I'd want to live for longer if slower and with less quality of life, if the genes are behind it and metabolic rate is unaffected then bless those worms..I think i'll wait until they isolate the active ingredient in wasabi though!

  • Ok Dr Sheldon Cooper! you unpicked that one in no time at all - with a very good solution I must say! So cans of worms aint your bag! ha ha ;) have an interesting weekend

  • I hate the internet...

  • so watch something interesting.. did you see bbc4 prog on hacktervism on wed night? or … via @LifeExtension

    both quite topical while AFK oh and heres another if you are keen, Pirate Bay documentary TPB:AFK ready for download . I find these kind of docs keep me connected and inspired to a community of people out there that are active in our culture.

  • just watched TPB:AFK really good doc thanks :)

  • a brain injury, is not a disease, you can't catch it off someone, it a personal injury, we have lost the ability to make new brain cells, that's why we can't remember how to do things, we've just picked up, but you can get the ability back with needle work, you call it acupuncture, it's actually from are maker, science is using man made tools, to over come the problem&it will NEVER BE SOLVED THAT WAY!!!

    I've got to go to Hk for my needle session, cos my brain injury is very deep&the needles in the UK can't reach that far.

  • True enough a brain injury is single event, but it's effects are life-long and disease-like. Moreover, in this sense i'm thinking of a disease as something chronic, consistent in types of symptoms but inconsistent in which symptoms and the severity of those symptoms present themselves on any given day. I drew a parallel to suffers of MS because they typically have periods of illness caused by inflammation and scaring and remission where they have very few obvious symptoms. There are some aspects about my brain injury that I find inconsistent and unpredictable, this is why I don't think phrase often used by doctors that "the damage is permenent and lifelong" to not always be useful.

    Shame you have to go all the way to China to get treatment, but I'd have serious doubts about having someone stick needles in my brain, so I can understand why they don't practice this here. The lengths you're willing to go to is admirable, some people just accept life as it is, i'm not one of those, where there's a problem there is a solution.


    I've been punished, for doing so/it's a CRAZY WISH COME TRUE FOR ME!!!

    A friend can remember me saying life is too BORING.

    I use to be a monkey for Honda, they didn't take my NVQ & said, I've got too start again!!!

    & left them & became an office boy, don't remember any of the work there, but do remember some people I use to work with tho!!!

  • how do I know, we lost the ability to make new brain cells???

    brain cells give you white hairs, that's why old people have white hairs, cos there knowledge goes back along way. I know cos I started to have them when I was 14 years old, but none now after end of 07, my private party, only I was invited, that's why it was a private party, in my vocalibre, there is NO WORD of CAN'T & WON'T, I'll give it 3 goes & it doesn't happen for you call it a day, I like too keeping on pushing until it's done!!!

    I know it'll make you look STUBBORN, but I use to be like that, but NO ONE, NOTICED IT BEFORE MY PARITY. & see it now, as I'm disabled.

  • Back to the original question.....If you feel groggy in the morning and your brain feels swollen then try a cold shower. Your lymphatic system will be stimulated to work better and clean you out. It works for me anyway! I also do neurolymphatic massage over my body. Acupuncture might also help this. Try cutting out inflammatory foods too. You know; wheat, sugar, coffee, dairy.... it worked a treat for me! I also tried and had relief from craniosacral therapy for discomfort in the plates of my skull. You might also find sleeping on a magnet mattress or wearing a magnet bracelet helps. I had to have support with all these as introducing new habits is very difficult with executive function problems. Good Luck and it's great to read your questing!

  • Yes, I must try a cold shower, it's not for the faint hearted but it should definately awaken your senses, sometimes you need a kick up the arse! I sometimes expose my eyes to the shower, I theorise because the eyes are so sensitive that it should draw blood to the front of the brain where the executive functioning resides, I don't know if this is true, but it does make me more alert. I went through a period of not drinking milk and drinking fruit juices instead, I had less build-up of mucous, characteristic of inflammation and felt much healthier overall. Interesting about the magnetic mattress, had never heard of those, but I know that transcranial magnetic stimulation has been effective in the treatment of depression, what's to say that simply being near to magnets for a lengthy period of time wouldn't have an effect on the nervous system? I'm not aware of any studies on this, but since they're only a couple hundred pounds I'd be tempted to try it.

  • I do feel it warrants being called a disease in the sense that this kind of injury leads to

    dis-ease and has a dramatic effect on ones health and well-being. Other systems in my body got really effected and problematic too because of what happened in my brain.

    I believe that I can grow new brain bits. I keep feeding my self Ginkgo Biloba and flax seed oil and quaffing amino acids and learning new stuff! My BPI is going up! But I had to learn a load of other skills first. I had to learn to shut down, to stop and control my attention. As I recuperated then I could begin to build myself back up - as it were.

  • i am hoping to recover,however some of me has gone forever,you know it..but Parkinson and Alzheimer only degenerate..and whilst i feel i have both of those at the moment,i do have hope that with the right therapy my symptoms improve and i will be independent again in the near future.i am better than i was six months ago when it happened...this is a horrible time..i see all my frustration

    and pain on this forum,and it helps.thankyou

  • oh please no, don't call it a disease - its bad enough the public in genreal don't understand about effects / side effects of brain injuriesl If we call them a 'disease' I can imagine the repulsion on their faces if we say we 'have a disease' or are suffering from the effects of a disease. I don't think potential employers would like the terminology either. We all know discrimination is unlawful, but how would you prove it if you couldn't get a job because you have a disease. I understand what you are saying Anthony about renaming it, bbut don't think it would work in any favorable way - sorry.

  • Just come across this post again, interesting to read it again I actually remember reading this first time round, mostly I can't remember even the posts I replied to before so that shows an improvement doesnt it. I can't agree with it beng called a disease but my symptoms change day to day, that's my main problem, I'd love to know how I was going to feel when I wake up.

    Take care all Janet x

  • I feel like in the night I've forgotten stuff I learned the previous day. At first felt mega: trying to make breakfast (cuppa and cereal) was SO hard, exhausted after. And then remembered, oh yes, I'm not as was, got to relearn again. But every morning I'd forget. Often very dithery and cack-handed in the morning, again, feels like forgotten how to move/control my body (oddly often worse if slept well) and have to relearn the different wiring every morning. I used to slur/choose wrong words far more than now but still do (sometimes realise other times don't/too late to fix or correct with person, later) if frazzled, overloaded and too tired. But keep forgetting and have to relearn I'm like that, over & over. I do know this more often now though than before.

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