- “mTBI & the often resultant PCS alters so much within you that you become unrecognizable, even to yourself. Sometimes we lose hope due to others’ misunderstanding or denial of what we’re going through, and often we pay the heavy price for our inability to cope. I was compelled to build a network of websites & support groups because of the injuries that befell me, firstly 14 years ago, then again in 2007. If you read to the end of this page you’ll have a better idea about Post Concussion Syndrome, you will also see how much more positive the outcome has been & even what is yet to come!”- David Bottomley – PCSAWW,
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.“Recently we have seen some coverage in the UK media, in national papers such as The Independent, Daily Mail, The Guardian & Mail On Sunday which has raised the issues of Concussions on-field in Football & Rugby. During & immediately after the 2014 FIFA World Cup in Brazil there was an outcry which echoed that which was also heard in The USA over recent years in relation to brain injury in contact sports such as NFL, Baseball & Hockey leagues. Why were players allowed to continue in games after being knocked out in play? Who was responsible for their welfare and what should be done? As we know there have been high-profile cases of suicide due to repeated mTBI in NFL & many more have been forced to retire early, their lives altered forever. Action became inevitable & both Senate & Congress became compelled to change the laws; that was progress as a ripple-effect further afield was well overdue – Especially in the UK, and also in Europe.
It seems like something is about to change here in Britain after years of apathy, although as usual the changes will be stimulated for financial reasons (e.g in USA $490,000,000+ was recently paid top the NFL players who weren’t protected from mTBI & concussions). We are also seeing some action now in the form of a UK parliamentary enquiry into some of these issues led by MP Chris Bryant…. Although:
Barely anyone in the UK’s public or health services are seriously taking notice of, or ready to tackle the hidden epidemic that is Post Concussion syndrome. Instead charities & private organizations like Headway are the only points of help & support for brain injury survivors. Over 75% of MTBI cases are misdiagnosed, only 1 in 10 Mild Traumatic Brain Injuries (MTBIs) receive hospital treatment or follow-up, this puts them at significantly greater risk of developing Post Concussion Syndrome. Treatment is only available privately at considerable financial cost to the sufferer who may not be able to meet the price; as we know most MTBI victims are in the majority younger males of lower social standing.
Together we can spread awareness & get action for the forgotten sufferers of this ‘Hidden Illness’ & regain our dignity in the face of misunderstanding, discrimination & denial of basic human rights.
Retrograde, Anterograde & Post Traumatic Amnesia, Depression, Suicidal thoughts, Chronic/Breakthrough Bodily Pain, Anxiety & Panic Attacks, Severe Headaches, Mood Swings, Insomnia & other sleep problems, Personality changes, Irritability, Loss of Co-ordination & Concentration, Emotional Lability, Nausea, Confusion, Hallucinations, Fatigue, Social Behavioral Problems, Partial/Temporary Bodily Paralysis, Vision & Speech Problems & more besides are ALL symptoms of P.C.S & P.P.C.S which are not medically treatable (only some symptoms are). Imagine several of those symptoms at any one time throughout your day & at random? This is partially what has led to Society brushing this complaint under the carpet or labeling sufferers as Fake!
For nearly 200 years this serious & life altering disability has been generally completely misunderstood or ignored by health services, medical science, media & the majority of the public. It is however a serious disability from which sufferers encounter extremes of discrimination from all directions.
P.C.S & P.P.C.S (Prolonged/Persistent Post Concussion Syndrome) were formerly known as ‘Erichsen’s Disease’, ‘Railroad Spine’ & ‘Shell-shock’ in the past, but now research has widened in progressive countries into ways of treating this previously untreatable condition.
However in the UK most GPs, Doctors, Specialists, Psychiatrists & Psychologists etc have NO idea of what P.C.S & P.P.C.S are let alone how to treat a patient who has suffered 1 or more mild concussions (MTBIs). In fact many are still in the dark ages & believe that PCS is an imaginary illness.
P.C.S & P.P.C.S can end careers & alter lives drastically within seconds & last anything from 3-6 months to a lifetime! Professional sports people will tell you about friends & team mates whose entire careers were wiped out with one blow to the head, never to return. Until recently treatment was thought to be non-existent & is still generally unavailable (especially in the UK). However holistic & physical methods such as Bowen Technique Therapy, Cranial Release Therapy & Hyperbaric Oxygen Treatment etc are being used successfully in more progressive countries such as the USA.
The standard NHS approach to P.C.S is to ply patients with increasingly high doses of class ‘A’ pharmaceuticals & leave them uninformed on long waiting lists for therapies such as CBT etc that are of minimal use to someone who suffers the many serious symptoms. As the old saying goes “When the only tool you have is a hammer, then everything starts to look like a nail!”.
15 years ago I had little idea what Post Concussion Syndrome (PCS) was, apart from that ‘Shellshock’ was something that had affected many soldiers throughout wars down through history. I NEVER thought in a million years that I could be affected by it...
13 Years ago I was affected by Mild Traumatic Brain Injury (MTBI) myself & had my world turned upside down. I couldn’t get treatment or advice anywhere, in the process losing my health, confidence, friends, dignity & home etc…
12 years ago I had been forced out of my job & was suffering the worst depression of my life, taking every medication the Drs said I should be to get better. The truth was it didn’t help I was just being drugged to keep me quiet, the fall-out was horrible...
11 years ago I was mis-medicated, drugged as is usually the case with PCS sufferers & as a result of mistreatment, incompetence, lies about my health records & mis-medication I ended up homeless....
11 years ago I was still struggling, subject to discrimination & even denied rehabilitation or a voice until one day, after the death of a dear friend (also suffering from invisible illness) I vowed to make a difference somehow.
10 years ago I had educated myself about my own illness, knowing more than any of the Drs I met. I realized that there was nowhere on the worldwide web where people could go to find information, support or advice from people who’d been affected by PCS.
7 years ago I had another MTBI which left me in a deep dark hole & I hit rock bottom! I had to start yet again, no home of my own & no money or belief in anything other than that I was completely alone, yet from that isolation came Hope. Spending time to rebuild my life once over was hard, yet it was just the beginning of a new life which was an amalgamation of the ‘Old ‘Me’ & the ‘New Me’…. I left medications behind as their prolonged usage had worsened my condition beyond belief & regained much of my former self but there was still lots to do & so many people to reach…. The fight to spread the word of ‘Awareness’ got more serious.
6 years ago I was helping to provide hope for many more people by sharing my own experiences & that in turn helped empower others to start their own Blogs, Websites & Groups; some even wrote books on mTBI & PCS!
4 years ago I could return gradually to work, a goal which had eluded me for some time. Now I would continue to learn & share the skills gained on my own healing journey, as well as other life & spiritual skills I’d learned down 20+ years such as Reiki, Kotodama & Meditation…
Today I can look back & learn from that roller-coaster ride, enough to give others hope & an ear to listen…
Since then our cause has reached out to members on every continent, informed both the newly diagnosed & those who’ve struggled for years. we’ve been taken as a point of reference for professionals & proposed national petitions for greater awareness in the public arena. Most importantly we have given much-needed support & comfort to sufferers all over the planet.
Since 2010 a steady surge in action began via the internet & free social sites such as Twitter & Facebook, this led to people coming together to share common experiences & problems associated with having Post Concussion Syndrome (P.C.S) or Prolonged or Persistent Post Concussion Syndrome (P.P.C.S). These people are spread out across the world in locations from Canada, USA, Caribbean, Europe, Africa, Australasia & the Far East to name a few.
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It became clear that some countries were well ahead of the game, USA, Canada, New Zealand for instance where heavy contact sports such as NFL had led sports universities to develop & research new effective ways of handling this far from new condition. Some countries like the UK on the other hand were behind the rest of the world & were even regressing backwards in both attitudes to sufferers & willingness to progress towards treating people through the N.H.S.
Well, I can say from first hand experience that I am in one of those unlucky enough to be suffering in the UK, where we P.C.S sufferers fall through all the cracks in the system, not even clearly labelled (we British love to label things black or white, good or bad, a dualistic heaven!) as a ‘Mental Health’ problem, undermining the seriousness of P.C.S as a complex Neuro-Psychological disorder that ruins & often indirectly ends lives!
All this has to change & our health authority’s denial of the size of the epidemic must be left behind in place of progressive new treatments which ARE available & DO work for patients in many countries. Denial, ignorance & excuses are helping nobody to tackle P.C.S & P.P.C.S long term, but sadly that is all that is currently available.
My information comes from inside the N.H.S & directly from its own employees, doctors, nurses & specialists among others. Since 2006 I have learned of shocking practices, neglect of care & tragic countless stories of people left to rot on sickness benefits system, simply because the system refuses to admit that it needs patient driven opinion on how best to implement the right treatment paths & procedures to ALL P.C.S patients.
I’ll reveal through personal experience & that of others simply how things are with P.C.S in the UK & share with you much more positive stories of Hope, Inner Strength & Survival, as well as sharing news & developments in modern treatments available, where to find help if you need some, how to cope with British Beaurocracy & much more….
Thanks for reading & don’t forget to tell a friend about us also please?
Namaste, David Bottomley (Founder Post Concussion Awareness Worldwide)
PLEASE NOTE: To reiterate some basic & very important information about all of our site’s posts & our groups on Facebook; These groups are not Support Groups & are not run by healthcare professionals but by ordinary sufferers of MTBI, PCS & PPCS. We DO NOT provide medical advice or therapeutic advice, all opinions expressed by Creators, Administrators & members is purely opinion & should never be taken in place of professional advice!
We bear no responsibility for advice or recommendations given by members whom express their opinions here, whether they be healthcare professionals or not.
We trust that you will understand that in this day & age of blame & legality it is important to spell out theses points. We have always maintained that we provide only information & opinion and so the onus is with members to research any opinions they may find here & to make appropriate checks before assuming any measures relating to their MTBI, PCS, PPCS or ANY health or personal matter, all medicines & over the counter remedies carry legally binding care instructions, warnings & limitations as a matter of course…
New Podcast for 2019 : https://open.spotify.com/show/0cfdoYDWS0cfdoYDWSr