Hello everyone,
I'm new to the Headway Health unlocked site, just joined and I'm really looking forward to meeting and talking with other members.
My interests are in learning about brain injury experiences, what has helped others on the road to recovery and I'm always looking to understand more about memory disorders.
I'm always here if any one would like to talk or share experiences (thank you for so many posts and discussions to read through).
I wish everyone well and take care,
Kate 😊
Hi Kate, just read your profile and I can say it's about time someone with a professional interest looked in on this platform, think data sets. You may have read the research and have an idea of what brain injury is all about, but I think you will get a totally different perspective here. You may find a new language, discontent with neuro expertise, hopelessness with the lack of services, loss of identity, support in peer-to -peer exchange, interesting rants, the nastiness of the state, an inability to see beyond the NHS for rehabilitation prospectives and somewhere where you can be honest and speak freely without judgement.
Hi and nice to meet you.
I've had a look around and I can see your point. Coming from the research side, it's quite a change to learn more and see the perspective from brain injury sufferers, that's really why I'm here.
I've heard that getting access to neuro services is tough and I'd like to hear more about the rehabilitation process and if it's effective. Thankfully I haven't had first hand experience but I'd like to know it was there and fit for purpose to support me or my family if ever we needed it.
Thank goodness we have this platform to discuss our ideas and hopefully see some service improvements. I hope your own research is going well too.
Unfortunately rehab services are far and few between, it's a health authority lottery, some get help after the acute phase if they have serious injuries, but most moderate and 'mild' injuries may get a little help before being abandoned or classed as having 'psychological' issues. The UK unfortunately is generally 30 years out of date, out of money for research and rehab. Even the government is aware of this issue because it's costing £15 billion a year by doing little to nothing and passed a bill in parliament to for a strategy to solve the issue.
Keegan, G. (2021). Health Update: statement made on 2 December 2021, statement UIN HCWS 438. UK Parliament, written questions, answers and statements.
questions-statements.parlia... 02/hcws438
I'm currently in uni doing a master's research thesis based on my experience of brain injury and the method I used to rehabilitate which was based on a DIY program inspired by various youtube videos. I'm varifying the method scientifically. Because I have the subjective experience I can see from mainstream research papers just how far off the mark the 'experts' are. The proof of their inadequacies is the government bill which recognizes their failures.
I'm glad you are here because you will see the reality of the brain injury experience unfolding before your eyes and it will be different from what you have been taught in your studies. As a matter of interest did you study first-hand accounts of people's journeys from injury to recovery?
That's really eye-opening - I've heard the situation was bad but not to that extent. Thank you so much for the information and I'll be sure to read up on your link to the Health Update.
You're certainly in a position to understand what's really needed in rehab from your own personal experiences and I hope your work goes well, hopefully it could influence some changes for the better. I'd be interested to know more details about what you found or see the Youtube videos if you have links.
My own experiences have mostly been from the research papers, I haven't worked in rehab myself. I'm sure the research isn't revealing the whole story and you're right, it's so much better to hear what's going on from the service users side for real insight.
This is a real journey of discovery you are on. Firstly, there are two paradigms to brain injury, the mainstream paradigm found in general academic research and health care, then there is the functional paradigm mostly based on private health care research. The mainstream uses a top-down approach, i.e., is psychologically based, while the functional is a bottom-up approach i.e., the brain functional damage causes the problems.
This is reflected in treatment and rehabilitation, the mainstream mostly uses pharmaceuticals to treat psychological conditions whereas the functional uses a range of neuroplasticity methods.
The obvious solution to treating brain injuries is a combination of both, in multi-disciplinary rehab centres.
The youtube link I recently shared has many of the leading lights in the functional realm, you can snowball searches to find further links, these will also generate similar content through the youtube algorithm.
A couple of autobiographical accounts will be of use to you:
'The ghost in my brain' by Clark Elliott (A.I. scientist who had a concussion)
'My stroke of insight' by Jill Bolte Taylor (A neuroscientist who had a stroke)
'Mindfulness and stroke' by Jody Mardula (A psychotherapist who had a stroke)
'The woman who changed her brain' by Barbara Arrowsmith-Young (the founder and creator of the Arrowsmith rehabilitation program)
You can also search google scholar for autoethnographies, subjective scientific accounts, on brain injury experiences.
My research is creating a neuroplastic rehabilitation model based on proven neuroplastic enhancing methods that can be accessed for free or very low cost on social media platforms. I have interested third parties for what they are calling 'the product.'
pink I knew you were knowledgable and helpful but I didnt know all this about you. Fascinating and I hope your research goes from strenght to strength. x
Thank you very much for the background information, I've heard about the combination approach to treatment and recovery and it would be interesting to hear if that strategy (pharmacological + therapies) has been effective and what service users think of it, perhaps they prefer one or the other.
I'll be sure to take a look at the videos and I've made a note of the autobiographical accounts, thanks again.
I do hope your neuroplastic rehabilitation model gets the go ahead, it sounds encouraging and just what we need now. Keep up the good work!
Thanks, PV, for explaining the difference re bottom up and top down- I hadn't heard it put that way before and that's a good, simple, and very important distinction.
Leaf
Hi Kate my name is also Kate! I am an ex nurse with congenital brain injury and epilepsy (ill health retired from 20yr career in NHS) Happy to share my experience from both sides of living with brain injury… 😀
Hi Kate and welcome ! It should be interesting and useful sharing the different perspectives of brain injury. So glad you've joined us & hope to see you again soon.... Cat x
Welcome Kate! Just read the replies and I know that you will get a true account of the difficulties we are all experiencing here. It's an amazing community full of people with courage, bravery and hope as well as loss, pain, disappointment and many more of the difficulties we have to deal with. I'm happy to share my personal experience because if we don't speak up nobody will ever know how we truly feel and the often devastating impact of brain injury x
Hi Kate and welcome.You are a welcome member as you can bring a different view. Also you will hear first hand experiences.
I apologise in advance for the spelling or grammar, also abruptness at times. It will not be personal it's just what some of us can be like at times.
You will hear many different effects from people who suffered simular injuries. Different solutions to simular problems. Different advice also.
All are correct and valid.
The worse advice ( not from here) to help memory and keep appointments was keep a diary. Yeah great never told me how to remember to read it. They meant well but cased more problems.
This I know works for some but didn't for me.
So sit back ask away and get ready for different answers to the same problem. Just remember they are all valid.
Welcome again ,
Pax
Hi there and thanks for the welcome.
I'm sure I will learn so much from your discussions and find out more about the patient perspective and rehab services. That's so interesting about the diary, it initially sounds like a good idea but as you say, it's not for everyone!
You all have fantastic courage and determination and I admire you so much for overcoming the problems you've all been faced with. I think everyone needs to find a way through that works for them and it can take time, its important to stay mentally positive too.
Take care.
Keeping positive can be testing but vital. It's true there is no right or wrong thing that works for all. It's a case of throw everything at a problem and see what works for you.
Hope you find it interesting and it will be good to get your perspective on things.
Remember our experiences cover many years and may not be current. Some things change some don't and some we wish would change.
As in other medical cases it seems its still a postcode lottery on treatment.
It will be great to get your take on things,
Pax
Hi Kate. Great to have you with us. I just wanted to point out that although most people here have injuries resulting from an accident or incident there are some of us who were born with our brain injuries as well. That obviously means we again have a different perspective on things. Best wishes.
hi Kate I didn’t realise you had just joined when you replied to my post . It was so nice to hear from someone on the professional side comment about what you’re trying to deal with . This is the only place I have to ask questions on the new me ..
I had other injuries when I fell and have had more support with these then help with a fractured skull multiple bleeds and broken neck .. I am very lucky to be as well as I am but very difficult living with a very different me …
I was a mental health support worker prior to my accident and had worked with a guy who had TBI as a teenager doing 24 hour shifts with him .. I knew enough from this to know things with me weren’t right ! I got my own cognitive therapy books, worked in my speak and read in here
By the time I’d seen the speech therapist I was already getting better that was 12 months after the accident .
I am now doing an hour a week as a volunteer friend with the stroke patient who has speech difficulties .( the speech therapy as me if I was interested in doing it ) one step closer to normal for me .. I’m not good at excepting the new me and want back who I was ..
I am so happy to see your on here and would help any way I can with helping to get more information to Dr etc who are very nice but clueless .
When I got back to driving after 10 months my memory was even worse than now so I would take a photo of my car and the names of the streets I had to walk through to get into town so I could find it later .. kept losing my car in car parks 😁 so several streets away would have been impossible .. sue x
I'm so happy to hear you're doing better now Sue, it's takes time, I know. Well done for being so strong! I've studied neuropsychology for some time but I can't imagine what it must be like to live with such life changing conditions, you're amazing.
So sorry to hear about your memory problems and losing the car, it must be frustrating, although I don't think you're alone when it comes to finding the car in the car park 😁
hi kate. You will have plenty to read about on here. I might have a memory question for you if I get to ask it.
Hi there,
You're right I've only been here 2 days and I feel like I've learnt so much already, plus everyone's been so friendly 😊
I'd very much like to hear your memory question anytime and I'll do my best to help if I can. I don't mind the chat system too if you prefer.
Thank you for your welcome and take care x
Hi Kate: I joined Headway about a month ago and it's been very comforting and informative. Welcome!
HI KateI 'll speak up for a group you won't see at rehab.
That is, those of us who were injured, and had such extreme issues with sensory overload and motor issues that going to a rehab group is out of the question.
I saw a physio private in the early stages who at worked in a neuro rehab program who tried to insist my issue couldn't be a brain injury, because she considered herself an expert and she hadn't seen the type of tremors I got. The real issue being she worked in the hospital, and no way I could participate there as it was too triggering- I couldn't even get to the door.
I do know many don't have movement disorders triggered by sound, light, or cluttered areas, but from what I have found since it isn't exactly rare, either.
Also, the rehab problem has to include solutions that aren't ruled out by lack of funds. A lot of us run out of money pretty fast, and also find the paperwork needed to apply fir various programs another hurdle we can't get past. Doctors who don't understand we really do need these things also don't help. Bi literate doctors are few and far between- but the application processes pretty much all require them to sign something - and they very often won't- so that is another hurdle.
The system really needs to issue some sort of card that'll be generally accepted. And, there needs to be a process to get it so it actually us gettable - as it is we waste a lot of critical early days rehab time trying to find help and jumping through hoops.
Thanks for taking the steps to come on over to the trenches.
Leaf
Good morning Kate
Thank you for reading my piece The Future the other day - a pretty brief overview of a quarter century!
When I jumped out of my Jeep and was then poured into Glan Clwyd who did a good job of fixing the physical stuff and took instruction from Walton on the head - I was away with the fairies!
After 3 months (or so) Glan Clwyd let me go as I had a place 3 days a week (I think) at WNRU, Clatterbridge. Don’t remember much about that apart from they were all very kind but I didn't really want to be there. On releasing me after 3 months they told me they'd a wonderful job which even though essentially still away with the fairies I robustly told them they hadn't.
Anyway, back at the pub as you've seen things didn't last long - I knew something was wrong but didn't know what until I found my wife in her son's bed with a bloke (he'd been a customer for years). She then called in the doctor who'd been in overall charge of me at Glan Clwyd - he told me everything was my fault and accused me of drinking very heavily and other poor behaviour .... LOL, I was sleeping towards 20 hours a day and still away with the fairies!
As I said, I was lucky and went back to the family home and business. Dad did a fairly good job of support and sorting out my past so nothing as far he knew could come after me.
I got some support from The Brain Injury Service, Colwyn Bay but that didn't last long, can’t remember the lady's name but like everybody she was very nice.
After about 10 years I was called into The Brain Injury Service for review by Dr Rudi Coetzer, Consultant Neuropsychologist. Dad took me, he'd just been diagnosed Advanced Prostate Cancer, at that point. Rudi must have decided I needed some help at that point so I saw him fairly regularly for a few years until I told him much as our chats were very nice it was all pretty pointless and perhaps we should move to an annual check-up type event. Dad passed that spring (2015 I think) and when Rudi sent an appointment for January 2016 I took my mother. I thought everything was okay and didn't bother when appointments didn’t happen the following years.
By summer 2019 I again knew things were not right, but did not understand the extent. I had no idea what to do or where to go so I went to The Brain Injury Service to see Rudi who was not there. I fell over big time and eventually they put me in a ambulance to Glan Clwyd. Don’t really remember what happened but was there all afternoon and saw several people but was discharged and went home. I carried on at work and got some input from The Ablett Ward at Glan Clwyd and Rudi Coetzer but was still basically left to my own devices at home an work until everything hit the fan just before Christmas. I lost my job and business, my mother left home (brother took her away) and sued me for trespass. Covid happened and nobody would help apart from a lady called Sarah Thompson at The Ablett Ward who really tried hard.
Since then I have battled and battled trying to engage help and support wherever I can think. I have had some continuing success at The Brain Injury Service with Dr Cathryn Roberts now Rudi has retired. However the local Mental Health Services at Nant-y-Glyn are a complete disaster and totally uninterested despite Betsi Cadwaladr University Health Board being poked by my MP, David Jones. Basically, it seems to me, the NHS is run by very clever University educated people who don't understand real life.
So, until recently I didn't have much need for the outside world and therefore little knowledge of Headway other than it existed. I made contact locally in 2020 looking for help which like everywhere at that time was difficult. Rosemary Holland did try to give me some help and advice and earlier this year group meetings started up again. Rosemary has had some success in getting a firm of local solicitors, Gamlins, to host and help us. However as I said elsewhere I had become fed up with the monthly chat and was about to withdraw.
I think basically Rosemary has got tired of banging her head against brick walls and so decided to take a rest. At our meeting this week Simon Roberts of Gamlins took control and is looking to make a difference so I will continue to engage and be as helpful as I can even though I really have no idea what I'm doing!
Kind regards
Michael
Hi Kate - welcome. My injury was mild, and my impairment minimal, compared to some I have read about on this platform, but I am acutely aware that I'm still not the person I used to be. So glad you are taking an interest - starting from an academic viewpoint. How you disseminate the information you gather is really Important. As a minimum you should circulate your findings ( including Pink Vision's work, and proposed programme) to as many GP surgeries, and teaching hospitals as your budget allows. What is palpable for the patient population is the deplorable lack of awareness of most doctors about the effects of brain injury.
Thanks for being here.
S
Hi Kate, and welcome. Great to hear from someone with an interest in brain injury.
MTBI here, no loss of consciousness, but my neuropsychiatrist helped to identify c5- 6 hours post traumatic amnesia. Second concussion, older female. Diagnosis was mild to moderate TBI on the Mayo scale. 4 years on, not returned to work, fatigue and organisation /memory, coping with conversation, insomnia, and noisy /busy environments like supermarkets, are still a problem - albeit much reduced. I have had small but significant cognitive improvements over the last year or so. I can now write down strings of numbers like telephone numbers, and my typing suddenly sped up quite dramatically this year.
Best thing on here was the recognition that I wasn't in a bizzare bubble on my own, where even I questioned the odd range of symptoms. Because the worst thing is feeling not believed by local medics when it is so difficult to advocate for yourself - I had to start taking family members to appointments with me - and the GP's insistence on getting back to work when, for example, I couldn't even do an online shop,
Private rehab on medical insurance (which the insurers are able to cap because they class anything neuro as psychiatric (so some policies don't cover it at all,also they pull the plug on funding once they - not the medics- deem a condition is chronic).
My rehab was with the neurologist's team of neuropsychiatrist- antidepressants and coaching on coping with fatigue, plus weekly appointments with his psychologist, largely geared around acceptance - plus weekly sports physio specialising in MTBI - using Leddy's Buffalo treadmill (exercise) protocol (except after the test on the treadmill, he put me on a stationary bike because of my oculomotor and vestibular issues) neck manipulation for the headache, oculomotor and vestibular exercises, plus fatigue coaching. Which all made dramatic improvements having previously plateaued around the 6- 8 month mark. I think the sports physio was the single most effective intervention - and the lowest cost. Though am still hugely thankful to the local brain injury rehab neuropsychologist I switched to locally just before lockdown, who coached me on coping with fatigue, and explained why I find some things more tiring than others based on my original neuropsychology report / tests.
I'm shocked that people with MTBI don't get anything like the effective help on the NHS that I had - which made a huge difference to the way I was able to function. If only people had at least access to the vestibular and oculomotor exercises and the treadmill rehab, I feel a lot of long term suffering could be alleviated.
I think I can safely attribute the sharp improvements I made during rehab to the rehab, rather than the natural trajectory of my own BI, because of the way I had become totally 'stuck' for a few months previously, before I started over. Although the relief from talking to this team of people who just kept pointing out that the reason I wasn't back to normal, was because I'd had a brain injury, was immense - and a help of itself, in terms of taking action to improve things for myself, even if the exercises took up a lot of my day.
Hi there,
I am so happy the exercises, sports physio and mindfulness really helped with your recovery, I hope you're feeling much better now.
That's true - everyone should have access to the therapies and rehab they need to help with their recovery and getting back to as normal a life as possible. The mTBI classification can be so misleading in the way of symptom severity, with persistent fatigue, headaches, concentration and memory problems being really debilitating long after injury and not mild at all.
That must be so annoying when others say there doesn't 'look' like there's anything wrong. We need to get much better education about TBIs out there.
Take care x
acquired mine in 2000, spent 5 weeks in an induced coma in Adambrooks hospital, 6 months in various hospitals/ clinics. 20 years trying to build/ accept the new me! Divorced. Spent eight years either supporting mum in dads demise before supporting her with dementia/ Alzheimer’s!! Last few months have had free time to concentrate on the new me! Still as useless, forgetfull. Soo many hours in the day, what to do to fill them!! Using this page to encourage others to find their way in a very trying new life!!
Hi Kate, as many ppl have already said - welcome to the forum! It's good to have somebody from the professional community on board. My Story - fell onto a tiled floor at home 2 years ago, smacked my head - unconscious for 2 or3 minutes, awoke in PCS world, been there ever since. Tinnitus, vision problems,severe fatigue, sleep issues amongst many other problems experienced on a daily basis. Been thru the NHS system, gp, neuro etc - helpful as if was it didn't make much difference really& now discharged from the system and dealing with things myself, or rather with the help of the brilliant ppl on this forum - I'm not sure where I'd be without there help to be honest. Every day's a challange, but I'm thankful I can still function at a 'reasonable' level, so long as I use all the strategies learnt on here and try and look after the energy levels. Anyway, welcome again!
Best wishes, Bb
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