The last time I posted was over 12 months ago, although I read the daily news feeds and posts every evening and take inspiration from the posts of BI survivors and families supporting loved ones with a brain injury.
Today I took Josh for his 6 month follow up with his Neurosurgeon and he has been discharged which I am fine with as he did not need surgery and thank God has not any seizures. He will remain under the care of his rehab Neurologist.
During the appointment we discussed the window for recovery and he advised it was about 2 years.
Not to repeat my original post, but Josh had learning disability pre-accident. This was mild and centered around his communication skills. Due to his accident (Being run over on a zebra crossing) his resulting injury was a diffuse axonal brain injury and he was lucky to survive. He had a subarachnoid hemorrhage and a parafalcine and tentorial subdural hematoma.
He spent 12 weeks in rehab (mainly due to arguments between social care and the continuing healthcare commission) as to who would fund his care package when he came out. I work as does my husband and pre-accident Josh could be left alone, was independent to travel in our community and going to college.
Now we have Mencap support workers whilst we work, and Josh attends a day centre 3 days a week. We have been advised by his Rehab neurologist that he can never be left alone or go out by himself again, this was devastating news in March, but we have held onto the hope that he is wrong.
Due to cuts in social care and the learning disabilities services his original physio and speech therapy has stopped as there is only one to serve hundreds of service users, therefore its down to us to continue the exercises he was given and to practice his speech daily.
We are pursuing a civil case against the driver, (his insurers) unfortunately as the police did not press charges due to not enough evidence for CPS the insurers are playing hardball and although under codes of conduct could have released funds to support private rehab have chosen not to do so.
My concern is that it we are now 13 months since his accident and although we can see improvement in some area's, he still has balance issues, fatigue, damage to his vision, lack of insight into his abilities post accident, problems with his speech, change to personality (gets angry and upset really quickly) and mental health concerns - saying he wishes he had died.
His IQ has been retested and the overall score remains the same however, his processing speed index which was his strength is now his weakest area and this is the concerning part for any future independence.
I am not expecting a miracle, I know and accept even though it breaks my heart that we will not get the old Josh fully back, but I want to give him every opportunity to get as close as possible.
I suppose at the end of my long and wordy post I am asking is 2 years it?
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Hi, it does help thank you. We did see the most progress in the first 6 months for sure, being able to walk again, speech coming back although not as clear as before. Weight gain he dropped to 8st 3, now he is 11.4 which is more than he has ever weighed due to not being as fit.
I do have the Headway leaflets and I've rung them a couple of times they have been great. Reading all the posts does help too.
I think today after Consultant said 2 years and that's it I wanted to reach out to people who are going through or who have gone through the same challenges as Josh to get their views and what their journeys have been.
Thanks for replying really appreciate you taking the time
hi im 61/2 years on. mood swings noise intolerance my tongue is my processor im rude and i swear and im anti social and i dont go out unless its with my wife but then she has to look around for things that might start me off, i have epilepsy adhd a behaviour disorder.
things i say i dont know im saying until my wife tells me, fatigue our fatigue is different to physical fatigue in that for me i have to concentrate very hard when i type as a result i dont swear but i feel fatigued afterwards because of the effort ive put in.
im also not the person i was before my abi i look the same but im different.
Thanks for replying and sharing what life is like for you.
Josh has no filter now, he told his speech therapist that he wanted someone young and pretty - she did laugh and take it well, however, he now has no speech therapist not because of what he said but because he didn't like her and no amount of persuading him that it was for his own good would change his mind.
yes my wife steers me away from muslims, because i call them murderers or say " you know we dont want you here " or if i see a woman in burkha i ask if boris is in their or if i see a fat person i look in their trolley and point at them and say " no wonder youre so fat " so my wife tells me, i dont remember saying it, i just remember being told off for it.
for me, the worse part, is the short term memory, being in the middle of a conversation and forgetting the next word, or picturing the next word dut not being able to say it or having the word on the tip of your tongue..........but it just wont come out.
my wife can see when im getting annoyed and a gentle caress on my arm with her fingers is enough to distract me most of the times. theres one shop shop we go in and shell ask me if im going to be good, i cant promise that because i dont know, so i usually stay in the car listening to the radio.
something i did forget to suggest, was you find your local monthly headway group, its usually in the evenings and will be good for both of you. youll learn so much about brain injuries and youll get tips from other angels who have to deal with us when we re being absolute pains.
There is a local Headway group a few miles away I do need to try to go, my challenge is I work full time and we have support for Josh whilst we are at work but nothing outside of that other than a couple of hours social support for him 1 night a week.
I've found the Headway website really helpful, and the helpline too, and this forum although I've not been a regular poster I do read all the posts and responses.
2 years is not the limit, but effort has to be put in for improvements to be seen. So you must continue with any exercises to help his brain lay down new pathways.
I am aso 6+ years into recovery, most of my recovery has reached its linit i think. I have improved the fatigue threshold and my energy levels come nyinue to climb. Carry on carrying on and always hope that there will be improvements.
Clearly your unlikely to get back 100% of what you had, this said the two year rule would appear to be with out evidence it’s when GP’s NHS etc loose interest etc.
I have had assessments some 4 years after, and a few therapists, of which the Vestibular physio took time, but massive improvements! It’s not fixed but it’s miles better!
Every one is different, but honestly the 2 year thing is load of bunkum!
Thank you for replying, can I pick your brains on the Vestibular therapy. Josh's longstanding occupational therapist who worked with him pre-accident (and is the most amazing woman and support for Josh and me) has for quite sometime mentioned Vestibular therapy as something Josh would benefit from.
We have a peanut swiss ball and do exercises to strengthen his core, we started this to help with his eyesight as she had researched something about the link between improving the eye muscles linking in with vestibular therapy.
We also have a desktop report produced by a Neurologist (to support his claim) that recommends referral to a Vestibular Consultant as this report is in draft I can't share with my GP who won't complete a referral with just me asking for one.
I am going to continue to push this and if we can get funds for private rehab for him this is definitely a route we will go down.
Can I ask where you had your therapy, I have googled vestibular consultants in my area and have not managed to find one.
Josh is young, and was very fit probably one of the reasons he is still alive, the other being the air ambulance team that RSI'd him at the roadside and prevented any further swelling to his brain. I know he will never be back to 'normal' but if we can get help with his balance issues this would be a major plus
I had with help from the local Headway group, got referred to the Wolfson where some 4 years down the line I got assessments as to where I am and what has changed.
From that I was referred for various therapy’s some more successful than others most in the community, but the Vestibular Therapy was back in StGeorges Hospital in tooting where everything started as you where.
This was with a physio than consultant.
Being young and fit are very good signs, my balance had always been very good pre so that took a lot of the slack up as you where.
Hi Roger, I will contact my local Headway to see if they can recommend any physio's locally that specialize in Vestibular therapy.
Josh's OT really feels that this is a way forward for Josh and would come to any appointments with us and continue to support with any practicing outside of the appointments.
His lack of fitness now really bothers him, he used to be like a little Duracell bunny, but the fatigue is so debilitating, he now weighs over a stone more than he ever has and again that upsets him,
My GP practice is normally really good, so I was disappointed with the GP I saws response to my request.
Hopefully we should be able to release the specialist medical reports we have soon and then i can go back and give them a copy of the report that recommends he sees a Consultant.
Has he had a assessment? Mine was at the Wolfson upon being referred there by my GP which my local Headway had helped me to sort.
And after having all number of improbable things done to me, I had a discharge report with a list of referrals I oddly ended up seeing two Physio’s for two different things.
It sounds like he’s fallen though the gaps somewhere. As the NHS should normally support folks though is some odd things if folks first Disablity is a learning disability. I work with folks who have Learning Disablity.
Thank you for replying, I often read your posts and find them really inspiring.
We will continue to do everything we can to support Josh's recovery, we spent 22 years from his original learning disability diagnosis working with him, his teachers and therapists to defy the original diagnosis that he would probably never speak. It took 8 years before he could say any words and he was 15 before he could say his own name and J is one of the hardest sound to make.
The years from 19 to 24 he made amazing progress becoming independent in traveling, being understood by everyone not just family and having a volunteer job with the community coaches at our local football club.
It does make me angry that one careless act by a driver has robbed him of all this, but I will channel that anger into working with him again to give him the best possible recovery
Every brain is unique, as is the injury and the 'owner' of that brain. But it's now accepted that progress can happen after the 2 year point ; I believe I plateaued at 3 years. But now, 6.5 years on, I still find myself achieving stuff I that I thought was beyond my new, limited capabilities, so perhaps it's a case of never say never.
I think practice and re-learning, done by rote, can bring surprising results ; I've become a religious doer of crosswords, online jigsaws and solitaire to keep the grey matter alive. But your son, with learning issues, might need some extra encouragement and persuasion to motivate him through his depression.
Does he have any type of medication to address his low mood ?
Apologies for the delay in replying, very busy weekend.
Thank you for the positive confirmation that you can progress even after the 2 years the medical profession say is the limit.
When Josh went to rehab we did word searches with him, brain quizzes always around sport, his nick name from our friends was 'stato' before his accident as he loves football and could tell you loads about it.
We continue to push him as much as possible and have seen progress.
Regarding the depression, no he is not on any medication and this would probably be the absolute last resort for us.
He had counseling in rehab and for a couple of months after he came out, but he did not like opening up and said he did not want to continue However, over the last couple of months his mood has been worse (probably because his plan was that he would have restarted his road safety and transport training and start going out again by himself, but the Rehab Consultant said no he would not be safe which was devastating)
His OT has referred him back into the learning disabilities team for counseling again, he has agreed to it, the guy who is going to support him came last week, and is going to try a different style with him, not sitting in an office but being out and about with him and just talking and getting him to open up.
He does speak to his support workers, and has spoken to me, he has also cried which he has not done before so I hope that by knowing he has lots of people to speak to and vent his anger if necessary this will help him.
12 months seems a long time I know, but your son still has a long journey ahead to come to terms with the deficits which he needs to adapt to rather than despise. It felt like bereavement to me, starting with a period of shock/confusion then the sadness followed by anger & frustration.
Brain injury rehab is a definite process where the changes have to be recognised and accepted...……... usually accompanied by the whole raft of emotions until we find new techniques and approaches for building a different but acceptable quality of life.
It took 3 years for me to fully accept I'm no longer who I was/who I wanted to be, and though we'll always look back and sigh occasionally, most of us do manage that transition pretty well.
Sounds like your son is getting some really useful support ; I hope he can come to like the new edition of himself, and find peace of mind. Best wishes, Cat x
My tbi came about in 1998 and I am still improving. At least I think so. It is a very long and stressful path for patient and family involved. But we have to be strong. My daughter has left home now at age 22. My husband has divorced me but I have to be strong. Mum and dad are around still , dad can not drive now so I feel alone. I do blame my tbi as it means I cannot live as I want with out assistance but life goes on.😀
I’m six years on and I’m not “fully recovered” brain injury is a lifetime thing for most.. I personally don’t think the doctor should of gave you a two year date of recovery. Brain injury rehab is counted in years not days, weeks or months.. I’ve spoken to people on HealthUnlocked who are 20 years on with BI and are still not “normal” 😁. I do hope he has a good & speedy recovery.
Thank you, I think we (family) accept that we will never get our old Josh back, but we want to give him every chance we can with therapy and support to have a happy life and reach his full potential post accident.
I had a large brain tumour removed last september was told at least 2yrs recovery.for first op i then got an in fection 2 weeks after surgery which nearly killed me lost part of my skull because of it and then 12 weeks since my titanium plate was fitted my neuropsychologist has told me could be looking at the 3rd year speedy rovery to himm.
Thank you for that it has been a rough ride was supposed to have had an ESA assessment sat had been bugging me all week only for them to cancel dont know why im having it i am no way near ready for work its the tiredness fatigue i am totally changed since my 3 operations in eight month space just not the same any more .
I just find it unbelievable that the DWP or their outsourced assessors don't recognize chronic life changing conditions that completely limit capacity for work.
The stress that they are adding to you is really unacceptable.
Pre-accident Josh was (and still is) in receipt of ESA, the support one, and had DLA care component from the age 2 we had a few appeals when his reviews came up over the years, but I saved every medical report, I had researched everything on his original disability and inundated them with it.
Since his accident he now gets mobility component of PIP too. i thought we may have to go for an assessment but we didn't
In the early days I found the citizen advise teams really helpful, and the benefits forum on the web for filling in the forms.
I’m so sad to read that the insurance company is shirking it’s responsibilities. I think I read (on someone’s post here in the forum) that solicitors are allowed to sue insurers who are behaving detrimentally to injured people to make them behave properly and support timely rehabilitation. They usually agree to assist financilly when this happens. Can you ask your solicitor to issue a summons to them ? That might enabl your son to get the support he needs while he’s still recovering? Insurers seem to behave appallingly and not be penalised. It would be good if Headway published a list of well behaved and fair insurers on their site like they do for recommended solicitors. People coudl then use the recommended insurers and boycott the ones who try to avoid looking after victims of their clients. These insurance companies and their shareholders are making profits out of victims with life changing injuries and they don’t deserve our business. I wish you the best of luck in getting the right help for Josh.
Hi Elenor3, it makes me really angry that they could have released funds early and didn't. The main reason is absolutely down to the fact the police didn't charge the driver, he didn't even get 3 points because after the accident he bought a web cam, so the police decided that he was being responsible so didn't put him on an awareness course either.
My comments around this cannot be put on this forum I think I would get banned
Everyone who asks me how the accident happened cannot believe that you could run someone over on a zebra crossing and not get charged, a driver coming in the opposite direction stopped. As a driver of many years, I always reduce my speed when nearing a zebra crossing, and if you see another driver has stopped its obvious you should stop too.
When this is all over I am going to the police complaints commission and I will raise a complaint, but at the moment don't want to impact Josh's claim.
The insurance company are one of the big ones!!
My solicitor is really good, the insurers have just asked for Josh's medical records and he had refused unless they confirm their position. We have been for lots of tests, seen so many specialists to support Josh's claim so hopefully if it does come to issuing a summons we will be in a strong position.
My husband was a courier for a long time and unfortunately when completing one of his deliveries a woman who was late for work ran behind his van and he clipped her. She wasn't hurt thank God, but took 2 weeks off work and claimed against his insurance.
They paid her out instantly and when I queried why, as my husband was not charged, had a letter from police clearing him, they said pedestrians can never be at fault.
The drivers insurers obviously don't subscribe to this school of thought
Oh dear - what an unbelievable state of affairs that the driver wasn’t charged. I understood that if some one was hit by a vehicle, that once the injured person has spent more than 3 nights in hospital - the CPS always pursue charges? Maybe that’s not the case, but either way in the case of a serious injury like brain injury - I thought they prosecuted. It really is shocking to hear that he was simply let off. Even worse though is that the insurers aren’t making major efforts to put things right. They were happy to insure the incompetent driver so they should meet their responsibility to the injured person . I can totally understand your anger. It’s a minefield. I think there is an ombudsman / financial regulator for insurance companies.....perhaps you can complain formally about them at some stage. Take care x
You and yours ARE caught up in the middle of systems and processes that don't communicate, hardly ideal when Josh had additional needs to start with, but you'll know from the various battles you'll have been through with his SEND status that resources are becoming more scarce, and need to be fought for. (Background-link, before my haemorrhage in 2015, I worked in a mainstream secondary school, filling in endless paperwork to evidence additional needs, and requirement for on-going interventions.)
Time-wise, we're all given the fabled '2 year' marker in respect of recovery. My 2 year point passed, and I had a monumental period of "This is not ENOUGH!", but that's just me being awkward and obstinate, that's not the BI, it's just me.
You mention that Josh qualified for the mobility element of PIP, reading through your posts, there's evidence that he ought rightly to qualify for the 'daily living' element, too, which, in theory, should give you the potential to 'buy in' additional support. The NHS and social care, and, by default, all other statutory and voluntary support services are stretched beyond capacity, absolutely nothing is 'given' any more, without a million boxes ticked, all filled out in triplicate. (Reading that back, it sounds simplistic, I don't mean that you should buy-in a carer, rather that there might be non-statutory but still certified support/groups out there, beyond what the NHS is able to offer, to further Josh's activity and engagement, the social stimulation is every bit as important as the physical, and I'm reading that Josh still has aspirations towards a course he was completing?) Headway will be aware of what additional support is available in your area.
I'm putting the cart before the horse. Headway will be able to advise on what 'could' help Josh, but, without the resources being 'prescribed' as such, it's a wish-list. (Bracketed reminder to come back to that, as evidence for the solicitors/legal angle that Josh's quality of life, and my extension, yours, is being impacted upon by the lack of appropriate intervention to work towards whatever level of 'independence' is right.)
I would suggest you contact your GP, and ask for a referral to whatever the local NHS calls their 'Long Term Conditions Team', that was the pivot-point in my case that started wheels turning in the right direction. Josh had a pre-existing condition that would have needed some degree of life-long support, however light-touch that was, the SEND-need is still there, but has been compounded by the BI. My LTCT is a panel of professionals, with overarching links between health, social care, and local support agencies, to over-simplify, they KNOW that 'an ounce of prevention is worth a pound of cure', and that the family's trajectory, without support, will place additional strain on resources if you're left to flounder and pick your own path. The LTCT are coordinators/facilitators, reading through your posts, you have all of your previous and current files in order, LTCT can pick out the most relevant parts from their perspective of funding/allocation/availability, and signpost, with an extra degree of leverage, to whatever is available locally.
Headway and LTCT can help you to draw up a support plan, which may initially look like a wish-list, but can be used as part of your evidence for the legal teams, that Josh would benefit from 'x' hours of support from agency 'y', at a cost of 'z'. (Also to project what the probable outcomes would be in terms of on-going risks if the support is not allocated/funded, it's an awful way of looking at things, but *I* know how I could potentially present a risk of harm to myself or others, post-BI. Bit of an incident with some smoke-damage to the house a couple of weeks ago, when the outside world assumes I'm fully functional because I manage to put my shoes on the right feet.) The LTCT 'pull the strands together', and have that 'leverage' element in persuading authorities and agencies to act.
The 'recovery', as others have touched on, is a vague target. We don't know what my 'IQ' was before my BI (Facebook quiz results don't count), so there's no way any professional can measure my deficits in any tangible/measurable way. I'm 'functional, with adaptations', and it's the 'adaptations', as much as the previous functionality/baseline, and the allocated support that inform our 'recovery' trajectory. (The quote-marks are my sarcasm-font, it took me a very long time to accept that I was never going to 'go back' to my previous level of functionality, and I spent far too long resenting a plateau-level that I saw as 'not good enough'.) We learn our levels, some more quickly than others, I've passed my fabled 2-year marker, and I'm still weaving in strategies to work-around my deficits, with a 41 year-old brain that probably has a higher degree of plasticity than Josh's younger one. For your legal teams, without adequate and appropriate intervention now, before the 2-year point, Josh, and by extension, wider family, will need a higher level of on-going support, brutally, that means more financial cost, 'hit them where it hurts, in the pocket.' It would be counter-productive for the other party's solicitors to argue "We won't know the functional impairment until the 2-year point.", when the level of impairment can be reduced with timely intervention now, without appropriate support NOW, Josh could present a risk of significant harm to self or others.
There will be progress, it may be slow and incremental, but there is hope. More than the airy-fairy notion of hope, there is help out there, it's just a case of knowing where to look. (Hitchhikers Guide to the Galaxy, "The plans have been on display for some time now.", systems and processes are so obfuscated and fragmented, with individual agencies all working to disparate agendas of their own, it's often a case of saying the same thing in different terminology, finding the 'buzz word' that triggers a threshold, it's laborious, we become tenacious.)
I had a SAH 3.5yrs ago and still have some ongoing issues however I’m dealing with them and adapting my life around it. Others don’t realise how much it effects the family around the patient , but at the same time it’s difficult for you to understand what he is going through. I got myself therapy to understand my issues and I have regular Neuropsychology to help me adapt and deal with my issues. I would highly recommend both of these. They also do sessions with the family. It has stopped our arguments and I’m a lot calmer now xxx
Hi, I’m just over the two year mark from my brain injury. Although after a year I was saying I’m fine it’s only now that I realise that it did take me two years to recover. My life is not the same, I’m now partially sighted and walk with a guide cane. But I’m often told that if it wasn’t for the cane you would never know that I had a brain injury. At the end of the day it takes as long as it takes. Personally I think two years is a small price to pay to get your life back on track after a brain injury. I had mine on my motorcycle, things could of been a lot worse.
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