Headway

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Is 2021 the year head injury gets true recognition ?

Whilst Covid has (quite rightly) been grabbing the majority of the headlines this year, there has been a lot of publicity around head injuries and the long term effects.

Amongst the things I can recall (!) are the effects on players like "Nobby" Stiles the 66 World cup winners, changes to the rules around heading a football for younger players, the recent publicity on Motor Neurone Disease (MND).

Chris Bryant MP, addressed Parliament regarding the need for further head injury support and praise for Headway. Now we have groups of rugby players in both the UK and NZ forming legal actions around legacy damage.

Whilst many of these started they will roll on into 2021 and beyond, so perhaps we will now see a some much deserved recognition and support of head injuries

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I'm glad about this. It's all long-overdue. My father spent his life in sport (Army career in Parachute Regt and then Physical Training Corps) and then managing sports centres. He said, for as long as I can remember, that any hitting or banging of the head caused brain problems. So many boxers and rugby players in particular went on to have issues.

A paradigm shift has been on the cards for a while, I shared a review of concussion approaches in sport a while back. The NHS treatment (or lack of it) was seen as useless and new guidelines were introduced for treating sports concussions. Sports players are valuable commodities these days and the drive to treat them if they are injured will introduce new innovations in treatments for their PCS, otherwise their value plummets.Interestingly two of the 'new' methods is through the visual system and vestibular system. These both use methods that are not recognised by the health service but are available privately. In the US these have been available for 30 years at least if you can afford it. I have developed a very healthy cynisim about the whole situation. I thought it very strange that my neuropsychologist was not allowed to discuss the above methods in her official capacity but urged me to follow that route in her private individual capacity. It seems they already know about them but can't use them. Why? There is a wealth of peer reviewed papers showing the astonishing results, especially from the visual aspect (search Dr William Padula), some of the work is incredible, glasses to allow people to speak again, glasses to open access to memory and other neural functions etc, truly incredible. Meanwhile it's the same old 'drug em up and dumb em down and dump em' approach in the general health system. Shocking, pharmacological containment.

Ah that's interesting, the second private neurologist I saw (thanks to the firm's medical insurance policy) referred me to a sports physio here (who specialised in concussion) who did work with me on oculomotor and vestibular exercises, and put me through the Leddy Buffalo concussion treadmill test and graded exercise program (plus manipulation on my neck, and guidance on fatigue). The neurologist also referred me to the neuropsychiatrist who went down the drugs and talk road with his psychologist - which the neurologist said was all part of the deal. Though it's worth noting that all this did not completely 'fix' me, and I haven't gone back to my job - memory, decision-making and trouble handling stress and fatigue being the key problems - (sooo much credit and respect to all of you that have gone back to work by the way - I take my hat off to you). So not a magic bullet. But I did make very rapid progress in a very short time - when basically I seemed totally 'stuck' well past the magic six months 'allowed' for concussion, with a pretty low level of functioning for me (among other stuff, not being able to go in big shops / stores without feeling totally disoriented and nauseous - nightmare to a lifelong shopaholic! 🤣) and a 24/7 headache - and while I fully appreciate that my concussion was a much, much milder injury than most people on here - it was pretty far-reaching in its effect on me (worse apparently because it wasn't my first, and I'm in my sixties and female - doh!)

Don't knock the drugs completely - depression, whether directly caused by the injury, or as a result of living with the effects of course, is a feature of brain injury, and shows up on scans (fmri I think) as a disturbance in the white matter. But concussion/ MTBI (while not showing up on conventional MRI and CT) also produces a disturbance in the white matter -and apparently both types can actually be resolved by a long enough course of SSRI or SNRI (which I think is quite fascinating). Plus brain injury predisposes you to recurrent depression and anxiety over your lifetime - unsurprisingly. Plus I think the talking therapy helped me to identify different coping strategies, and to process the huge impact on my life in a safe and timely manner ( the firm ' let me go' not unreasonably, after two years on sick pay). I was initially very resistant to the drug and talk aspects indeed - but have to admit they have been very useful.

Getting back to the subject.... What I find annoying is that these interventions - physio and psychology ( and other people here mention opthalmology and endocrine treatments) are pretty cheap things, compared to say heart surgery, and can make a great deal of difference to the lives of the many people out there with concussion ( including sportspeople, and servicemen with blast injuries) so why aren't these interventions more readily understood and available? (Okay that bit was my rant... Thanks for hanging on this long - and I think I'll email my MP - political pressure is a real thing, if you dig below the media hype - and the current shenanigans...... 😊)

Very good post with many excellent points made. One tiny thing, (sorry if it seems to be niggling,) I would be grateful if we could use the term 'brain injury' instead of 'head injury,' as it then includes those with an ABI not just those with a TBI. 🙂🌸

Sorry Marnie if I focused on MTBI in my response to Pinkvision's post, but it's all I know about treatment- wise (based on a small sample size of one...) though it's clear that there's a very great deal of commonality across the board on all BI symptoms x

That's okay. I only mentioned it because it's still really common for things to refer to TBI rather than ABI. Even on a Google search you can look for ABI and get TBI instead! 🙂🌸

Yes, you're totally right 🌸

🙂🌸

No i find that niggley as well espically when the likes of wayne rooney gets a cr@p load of media coverage for a small tiny scar which the media is saying its a massive open head wound like pfffft that a tiny scratch on his forehead, plureeeeezzzz

No, its part of the appg which started in 2017, the news just needs things more intresting to get more viewer to watch thr broadcasts to fill the gap that was covid briefing and make it more varied for the views to stay fixated to the screen.

I got invitied last year or the year before to go mingle with Chris at house of comms as part of this as made a bunch of friends.

ukabif.org.uk/page/Campaign...

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Hi bexx - that's really good stuff! Great to know! The side of parliament the media doesn't report .......😊

your welcome

I've had a bit more of a read of the links you posted - fascinating stuff. Totally on the money on rehab and benefits. From a brief scan, I can't help thinking that between sports TBI and serious BI that there's a bit of a gap - but will read further, thanks.

Lovely that it's cross-party, is that why its underreported in the media ( no 'political' angle to take????)

Perhaps we should be emailing our MPs..... I was once reliably informed that the main thing MPs take note of is the size of their 'postbag' on any one issue - apparently the media can be all over an issue like a rash, but an MP might have not received a single email from their constituents - and so they don't give it a high priority. So letters and emails, though it seems corny in some ways, really do work.

Is the figure of 1.4 million ABI really that low, or is it highly underreported do you think?

Thanks for posting this Bexx😊

Jen 🌸x

Absolutely agree it’s good to see the subject of brain injury is getting a decent look in in the media just now. I guess this is where organisations such as Headway etc should use this window of opportunity to press for an agreed and clear pathway by which all patients with brain injury get appropriate and timely access to specialists, departments and treatments. The pathway to help currently seems foggy to use a pun. My own journey to find help has been very unclear and perhaps not helped by our GP system locally not designating a single GP to patients. Things get missed and when we as patients have a wide plethora of cognitive issues as many of us do it’s difficult to always be on the ball enough to focus on, or chase issues with professionals. My own bugbear with how things are being discussed by the media now is that sports injuries seem to get more press than typical home accident or occupational related ones.

I personally had an accident at work. Sport and private care/insurance claims may be where the big bucks are but all of us should receive similar levels of care wherever it is possible and a recognised NHS pathway for care would help ensure that.

I think it was coming across the board, well until covid cleaned out the coffers of course and now there's even less funding for 'hidden' brain injuries.

Head injury never left the media like most health related issues they never leave the spotlight

Have a look at the links Bexx posted Cornish boxer, it appears there's a cross-party group in parliament pressing government to do just that.

Lets face it, whatever the media-projected image of politicians is, they are the only ones that can actually make changes needed. There's still a whole world of legislation outside of prime minister's questions and the current shenanigans.....

Thanks Painting-girl. I did take a look at what Bexx posted. It’s good to see something is being pushed forward though I imagine with brain injuries being so diverse there are many improvements that are needed at a range of levels. If I had the energy right now I would like to get involved if that’s possible. Maybe in time.

Yes, we're caught in a sort of double bind aren't we, when it comes to advocating for ourselves, aren't we? .... Too tired, too difficult to explain things. .. I suppose the CFS/ME people are the same....

Totally agree with you that the pathway for BI of any severity is really odd, based on what I've read here - and my experience with mild injury - I still feel it was by luck that I got focused help. Glad that one of the cross party groups is pushing for clarity - at least it's a start.

Oh well, at least MPs emails are easy to find these days! 😄

members.parliament.uk/membe...

Jen 🌸

Yes, I think I can manage an email or two. Thanks for the link. My own experience of navigating things has been erratic to say the least. What also complicated things is many of us have more than one health issue going at once and it’s easy to lose the focus as a result. My partner has been brilliant filling in the gaps when possible.

Yes, that must be even harder to manage. I was lucky to have the firm's medical insurance, but dealing with the insurance companies was a guaranteed migraine every time.

My sister came to quite a few appointments with me - does help, doesn't it? 😊

Due to covid in March its stated in my husbands medical letter his treatment /rehabilitation has not followed nhs pathway. Was told daily home visits to support with health, nursing, behaviour with PTA, 10th week home had one person came out which is still the clinical psychologist, no one else bothered, just left to it and me chasing July onwards as i just didnt have physical capacity whilst caring for him 24/7 2yr old and teenager, we havent experienced what should of been normal treatment, but im proud to were we are, doing solo despite areas that cause distress 10th month TBI next week.

I’m sorry to hear you didn’t get the back up that would have helped you so much. It’s interesting your medical letter says what it does. Not being an expert I don’t know what you can do to challenge what happened if you want to ( if you have the time and mental energy of course). Maybe someone here or perhaps Headway could advise? I’m certainly aware that right now here in Wales the NHS is particularly challenged with some facilities not fully available because of COVID. Hope things get better for you and well done for getting through things already!

He has Right Temporal Contusion, Subarachnoid Hemorrhage (SAH), Right Sided Transverse Venus Sinus Thrombosis, Small Subdural Haematoma and Left Petrous Temporal Fractures. Hospital 16th March home 31st march. I have no words but frighting experience caring left alone especially with PTA, on my own with 2 young children. No support, in medical letter states No pathway given due to covid is the reasoning. We were abandoned for 10 weeks, but i refused residential for him in those first 10 weeks it was too premature when no professionals stuck with visiting daily, i just didnt have it in my heart to send him, and clung on to hope, i gambled that the risks would outweigh a positive recovery were still adjusted and adapting best we can.

I’m so sorry you’ve had to go through this with so little help. The risks and consequences of not accepting the residential help you would think should have been made clear to you. Understandably you weighed things up for yourself and were worried about sending him off at such a time. See if Headway or the brain and spine foundation might offer some guidance perhaps. Not sure but can the local council offer some help? Or even contact your local MP? My MP helped me when I was made homeless. I’m not familiar with this kind of situation I’m afraid. You’ve absolutely done your very best and I hope you find things ease up soon.

Sadly Covid took over nhs not following the pathway. I dont know any different from our experience. Though I have no regrets taking the risks and he is exceeding expectations. I feel with consistency, routine, predictability, homemade meals of his choice and getting him off meds (PTA meds took 15wks) being home achieved a positive road to recovery. However, im aware there could of been positive factors that could of been acheived with brain unit residential . Nevertheless, i will never know as were pass that stage now.

Whilst waiting for care i did email Headway and local MP, no response. We dont need Adult Social Care especially stage were at now.

Sadly despite our experience, i know of people having cancer treatment postponed, operations cancelled, so despite our situation, many others have own experience how Covid prevented treatment.

You are absolutely right to think you past a lot of it now. It sounds like you have a good idea what you can positively do for him. Do get good medical advice wherever you can. As for the “home made meals of his choice” I suspect that is very welcome. I’ve been looking into various foods whichever are beneficial to recovery. Everything from lots of greens to turmeric and nuts. The best one I like is that plain chocolate is good for me! Wishing the very best in all that you are doing and look after yourself along the way too of course.

Yes we have Home visits from brain injury team, in process with hearing aid, and next month hormone blood test. I seek medical advice all the time, lets say im a flapper and like reasurrance all is going well lol.

Try your MP again perhaps? Having an eye for the detail and giving them hassle is good! 😀

Absolutely not as we've not won the World Cup and we're not household names plus dementia is well known to many people.

I think it’s unlikely to be honest, next year remember COVID19 is likely to still dominate after all the vacations will take time most of spring into summer? And that’s just the uk, plus BEXIT.

And well brain injury isn’t sexy etc, as more sports change that will get some news but unlikely to get to headlines etc.

Selfishly I'm hoping long Covid will produce some more research into fatigue...

I wondered about that 🙂🌸

Unfortunately does seem quite different, my wife has Long Covid and her fatigue is quite different, yes she is tired and sleeps a lot, but the mechanism and the how why is different.

But yes still a possibility but I fear low, I think unfortunately that Fatigue has no cure so difficult to get funding for research.

Oh dear, that's really awful for her, I am sorry to hear that.

It was a very off the cuff comment by my neuropsychiatrist, that he felt that eventually CFS / ME would turn out to be the same as the fatigue from BI, which made me connect it in turn to Long Covid - bit of a lay person's leap...

They're still unveiling new brain research though, there was an entirely new brain process / pathway discovered relatively recently which they didn't know existed ( sorry, can't remember the details) I think the view is that if they don't know a pathway exists, they can't develop drugs to influence it. Then the numbers of sports concussions and blast injuries in servicemen is raising the profile of brain injury in the States which may also help?

I’d not be surprised if brain injury fatigue wasn’t similar to CFS/ME.

My local (headway) group had a talk few years ago with the lead of one of the university research, and she did say that it was the military and their funding mostly that has allowed various research that had been sitting waiting for years!

That's so interesting, isn't it? There's this thing that blast injuries cause a particular pattern of damage in the brain in servicemen even if they aren't otherwise injured, and they have PTSD symptoms.. I think there's a concern that youngsters wouldn't sign up if they were guaranteed to get brain injury though, so I wonder just how far the military would really pursue the research?

The young are immortal (or at least think they are) so wouldn’t be worried I suspect.

Good to hear they are learning more about the mechanism of how brain injury happens.

sciencedaily.com/releases/2...

This is quite an interesting article...

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I have a frontal lobe injury and I experience fatigue and also have problems with my visual perception.

I can't remember the details but they've found evidence showing that particular part of the brain shows abnormality in ME.

I used to work with someone who had ME and from what she described her vision could be effected in the same way.

That's interesting about vision. The eye exercises I've got from the physio mean I have to track a pen in my hand moving both up and down, and side to side - I lose balance and get quite queasy when I do them.

My injury was top / right sided too

Fatigue is still a big problem for me.

Ah vestibular rehabilitation? I had a W on a print to track, and this being pre COVID19 a young physio, vigorous moving my head.

some of the activities where a touch weird and well being a bit pulled about!

But it has dramatically improved it’s not a magic fix, I’ll never be able to use the tube again say but I don’t get trapped in dark parks anymore!

They moved your head for you? I had to self inflict my queasiness on the eye tracking thing on a stripey print that was hard enough to look at on its own 😂. Started sitting down, then had to do them standing.... The tube did get a bit easier...

Trapped in dark parks??

Yeah Pre COVID so the physio moved my head while I attempted to read a eyetests.

Plus just a lot of looking into my eyes at close proximity which wasn’t at all uncomfortable! Plus the standard physio hand on you, which seems normal.

I attempted to cut though a park to work, and forgot how dark it was and got stuck, if I can’t see my balance is nil. Luckily after a short while was just enough light as dawn broke that I could walk again!

Oh crikey!! - talk about unforeseen snags of BI... glad dawn solved things ..

Don't think I've had a chance to check balance in the dark - must try 😊. I know the physio said I was relying entirely on my eyes for balance at one point, which would contribute to the headache..

Well, when I read the chronic fatigue /ME descriptions its really hard to see where they differ from post BI fatigue. They give the SNRI I'm on to people with fibromyalgia apparently.

Its not just in the news headlines where BI gets placed, it also crops up in soap dramas as well like coronation-street

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