Life after Locked-in Syndrome

3 Soldiers Finish the Job Together

As members of the 22nd Cheshire Regiment, Andrew Harding (left), Peter Coghlan (centre)  and Shaun Schofield (right) served together on a peace-keeping mission in Northern Ireland. This is Peter’s story:

“We all had each others’ backs during that time; keeping the peace was a very scary task for a 19-year old, I'm not ashamed to say. Fire bombs, bricks and a few hundred angry people wasn’t our idea of a night out on the town! We would spend a lot of days on patrol across the Northern Ireland borders too, feet bleeding sometimes from all the kilometres we covered in full combats. Carting the heavy I.E.D. detectors (Improvised Explosive Device) with helmets, webbing, magazines and rifles was not easy! Crossing wet barbed wire fences for days occasionally catching your privates while ripping your tackle area open...Oh yeah, we were living the dream!
  I loved to see that Chinook helicopter arrving to take us home when near to dropping with bleeding feet. The sound of it coming before we even saw it was incredible. ThudThud thud thud thud thud thud thud....The sound came from everywhere - and you had no idea for a while where she was! I sometimes got the seat right above the RAF Gunner, literally hanging over him or her as the chopper banked left and right WITH THE DOOR OPEN!!! Gunner covering the arks. Yeah, we became close in the army us Stockport lads, for sure...one mate is training me at the moment, boxing the pads. Rob McCormick or Macca as we know him.
Now, I’d better explain where this is all going!
In 2011, after a severe blow on my head brought on the stroke that left me locked-in,  I was nothing but a quadriplegic fart in a bed ..watching my drip-drip-drip..all day in ICU. No speech, no movement just these memories of a young, fit soldier and the dreams for a future I once thought I had!!
Being rolled about the bed in my own faeces, being pumped full of drugs and craned in and out of bed like a sand delivery, I certainly didn't visualize that 9 years after my brain stem stroke I'd be on national television with Holly & Philip on the ITV This Morning show watched by millions of viewers. I did okay, I think, but you can judge for yourself here:
https://youtube.com/watch?v=I6QXSLf7sf8

Having learned to walk and to speak again through 9 years’ obsessive behaviour, I'm living proof that the brain is more powerful than we know. All it needs, I believe, is the will, stubbornness, and persistence.
I absolutely refused to believe my life was over. As a soldier I wasn't going to stop until the job was done!
Andrew and Shaun were going to join me in a new assault.. up Mount Snowdon, which has sadly had to be postponed, due to Covid-19 and my having to return to Oz. But it was great seeing my old army pals again. Andrew, who got me busted for raiding a RUC cigarette machine (see my book)* and Shaun, who is now a CERT-ED Mountain Leader, have always been great guys to have in my corner.  These Cheshire Regiment pals have still got my back in civi street all these years later (cheers lads)!
I'm hoping we can inspire many head injuries & stroke survivors out there with my story. Cancer patients too!! as I was discharged from the army in 1998 with Hodgkins Lymphoma - my first battle.
If you want to follow my incredible 9-year rehabilitation, visit my website petercoghlan.com, or YouTube - In the Blink of an Eye - Reborn
Today I’m being used to help occupational therapy and physiotherapy students in university education to better understand LIS and stroke from the survivor's point of view. To show the strength and the power in the human brain and to provide insight into how determination can help the human spirit overcome adversity.
I'm very proud indeed to share my story with you and I hope I can make a difference to this, sometimes, unforgiving world.”

Peter's book  'In the Blink of an Eye Reborn', is available from Amazon and Smashwords

mybook.to/ITBOAEP

A literary look at locked-in syndrome by Alexandre Dumas

Did you know that the first description of locked-in syndrome was written by Alexander Dumas in 'The Count of Monte Cristo'? 

‘Sight and hearing were the only senses remaining.... It was only, however, by means of one of these senses that he could reveal the thoughts and feelings that still occupied his mind, and the look by which he gave expression to his inner life was like the distant gleam of a candle which a traveler sees by night across some desert place, and knows that a living being dwells beyond the silence and obscurity. In his eyes, shaded by thick black lashes, was concentrated, as it often happens with an organ which is used to the exclusion of the others, all the activity, address, force, and intelligence which were formerly diffused over his whole body; and so although the movement of the arm, the sound of the voice, and the agility of the body, were wanting, the speaking eye sufficed for all’.

https://rarediseases.org/rare-diseases/locked-in-syndrome/

Now you can read this 21st century experience by Peter Coghlan whose remarkable recovery from LIS is inspiring thousands of stroke and brain injury survivors worldwide.

UK: https://www.amazon.co.uk/Blink-Eye-Reborn-Peter-Coghlan/dp/1727145593/ref=asc_df_1727145593/?tag=googshopuk-21&linkCode=df0&hvadid=310817435886&hvpos=&hvnetw=g&hvrand=13854897127753846491&hvpone=&hvptwo=&hvqmt=&hvdev=t&hvdvcmdl=&hvlocint=&hvlocphy=9046433&hvtargid=aud-858307789606:pla-581237497900&psc=1&th=1&psc=1

US: https://www.amazon.com/Blink-Eye-Reborn-Peter-Coghlan-ebook/dp/B07H74XL4F/ref=sr_1_1?keywords=In+the+blink+of+an+eye+reborn&qid=1582968638&sr=8-1

Is your future already written?

Omens, superstitions and predictions all have one thing in common - Fate, a philosophy which began with the original three Fates from Greek mythology, goddesses who spun the thread of life, decided how long it should be for each individual, and cut it at the predetermined time.

Despite its mythical roots, this belief is very widespread, pointing to inevitable (often adverse) outcomes for every event - outcomes that are totally inescapable because they’re determined either by God or by other supernatural forces. As a result, fatalists may have a laissez-faire view of life, displaying a lack of purpose and an unwillingness to make decisions.  After all, what’s the point if the future’s already written?

If there IS no point and if the future is truly controlled by unseen forces, then why do we visit doctors? Why do we try to live healthily? And why are there fewer fatalities for people who wear seat belts when setting off in cars? If you’re fated to be an X-Factor winner, why bother with singing lessons? If you’re meant to pass that exam, why bother swotting? And if the job’s destined to be yours, does it matter how you dress for the interview? 

According to astrologers, a person’s character can be determined by their horoscope, the precise positioning of the planets and signs of the zodiac at the time of birth. Despite many challenges to astrology over the years, belief for many in its abilities - not only to predict the future but also to influence human behaviour - is very deep-rooted. 

Yet is such faith backed up by evidence? As part of an A-level course in Psychology, students were given a horoscope that had supposedly been drawn up according to each individual’s date and time of birth. Most students agreed it was extremely accurate, only to find they’d all been given exactly the same character description! 

So what’s the harm? Well, convincing someone they have a certain nature, set of talents or even destiny can exert undue influence over his or her decisions for the future......almost as though a screenplay of their life has been written in advance by somebody else. Social workers and psychologists have highlighted how being typecast as, say, the black sheep of the family, the clever one, or the ditz can colour  youths’ development,  virtually obliging them to live up (or down) to their given role. 

Even worse, whether it comes via zodiac chart or family members, such prejudgement interferes with our most basic human right – free will. 

We may be born with certain traits, we can certainly be influenced by nurture, and circumstances we encounter throughout life will obviously affect us. But with free will, we have the right and the means to change ourselves. So be the person you want to be, choose the path you want to follow and never, ever let fate or superstition dictate yours – or your children’s -  life!

Social Media: Avoid the Pitfalls

Avoid the pitfalls

       Before signing up for a social network, it’s good to set a few boundaries. Look at the potential dangers, decide how best to avoid them and create rules that will protect you from any fallout. Here are a few suggestions which I try to apply myself: 

1)   Be careful what you post and only do so when sober! If you wouldn’t like your parents to see those photographs or comments, why make them available to total strangers? Or worse – prospective employers! When texting, remember your manners. Try to ensure that every remark is gracious, ‘seasoned with salt’. 

      

2)   Check your privacy settings, as the default settings on the network site may let more people view your page than you imagine. It’s a good idea to customise your settings so only close friends can access your posts. Even then, you need to watch that you don’t give out more information than intended. 

3)   Should you receive a critical or negative response, don’t retaliate. If the criticism is well-meant, thank the sender for his/her interest. Ignore abusive comments and block them from your page along with any that make you feel uncomfortable. The same goes for dubious would-be followers or ‘friends’. Be selective and never open links from anyone you feel unsure of. Some may be pornographic or violent.

       

4)   Social websites are constantly buzzing with gossip, rumours and opinions about people in the public eye. Be determined never to write derogatory personal remarks about anyone, famous or not, even if they seem to deserve it – after all, who are we to judge? Failing to observe this rule may, at best make you seem spiteful, and at worst get you sued for libel! 

       

5)   Remember your details are accessible to millions of people, including some who know you, so guard your privacy. Don’t give out too much personal information such as home address, email address, where you attend school, work or college, when you’re at home, when and where you’re going, when you’re at home, when nobody is at home, your photos, opinions, likes, dislikes and hobbies and innermost thoughts. 

6)   Set limits for the time you spend on social networks and stick to them. Doing this will help you control your online activities instead of letting them control you. And if social networks start to take you over, and you find yourself thinking constantly about your tweets, blogs and profiles, then switch them off. Or simply take a break from them, like these teenagers: 

       “I deactivated my account, and I had heaps of time. I felt free! Recently, I reactivated my account, but I have complete control. I don’t check it for days at a time. Occasionally I even forget about it. If my social networking account becomes a problem again, I’ll just deactivate my account.” 

       “I have taken ‘networking breaks,’ where I deactivate my account for a couple of months and then reactivate it later. I do that whenever I realize that I’ve been spending too much time with it. Now I don’t feel as attached to it as I used to. I’ll use it for a purpose, but then I’m done.”  

      By taking sensible precautions and rationing the time we spend on social network, we can use it with confidence -without filching too much attention from more important activities.

       

Advice for Teens Online - Protect Yourself!

Keep online devices in the living room or other well-used areas and only go online when others are at home. Maybe you feel your parents are too strict, but any boundaries they set are for YOUR protection - because they love you - so cooperate.

Beware dodgy links, blogs, sites or ‘friends’ who want to manipulate or corrupt you. If you DO stumble onto anything unwholesome or disturbing, close the site down immediately – or even get offline! Don’t allow nasty, sick images to linger in your head and NEVER let curiosity get the better of you! Pornography is highly addictive and can actually change your brain!

If you’ve already been hooked by porn, violence or other disturbing websites, speak to someone who cares about you, a mature friend or family member who will help and advise you.

DO NOT allow anyone to manipulate you, groom you, intimidate you, make you uncomfortable or mess with your head. Remember, not everyone you meet online may be the person you think they are. That cool, good-looking 18-year old may be a lot older (and uglier) than you think! Never EVER give out your address or other contact details no matter how 'nice' your chatty new friend may seem!

Browsing aimlessly can be one of life’s biggest time-wasters, so schedule the time you spend online - and stick to it—no matter how absorbed you become. This applies not only to social media and chat rooms, but also emails! Countless messages can eat into other important activities, such as homework and studies.

Never let virtual communication take the place of face to face contact with the people who matter most – family and friends.

+BBC News has reported that paedophiles are using Facebook to swap images. NEVER agree to 'meet' anyone in a secret 'room' while visiting this site. http://www.bbc.co.uk/news/uk-35521068

*Names have been changed

Who were the Magi?

Every December, schools and churches throughout Christendom attract adoring parents, grandparents and assorted relatives to the dramatic highlight of the year: The Nativity play.
Amongst the cast of characters, played with effortless charm by cute, bright-eyed 5-11 year olds, are the Magi - also  known as the Three Wise Men or Three Kings from the Orient - drawn by the famous Star to Bethlehem and the infant Jesus.
For many, this is a delightful story but, as many  propaganda specialists will appreciate, one subject to religious spin. This is my attempt to cut through traditional perceptions and find the truth from the  original account in Matthew Chapter 2.
So, who were the Magi?
The Greek ma'goi (plural of ma'gos) likely refers to sorcerers or conjurers; experts in occult practices such as astrology and other forms of divination condemned in the Bible. According to the 5th century Greek historian Herodotus, they belonged to a priestly class and were probably Zoroastrian, following the predominant religion of the time. The International Standard Bible Encyclopedia states: "A ma'gos in the Hellenistic world had supernatural knowledge and ability and was sometimes a practitioner of magic." Early Christian commentators Justin Martyr, Origen and Tertullian also agree that the Magi were astrologers.
Their names are unknown and the Matthew account doesn't specify how many  of these astrologers visited  Jesus.  In fact, little is known about them, other than they discerned a star 'rising' in the East from whence they came. As only  the astrologers could 'see' it, this was obviously not a real star or conjunction of planets.+ Nor did it lead the astrologers to Bethlehem. Instead, the travellers were guided to Jerusalem where they asked, "Where is the one born king of the Jews? For we saw his star when we were in the East, and we have come to do obeisance to him." On hearing the news, King Herod became agitated and gathered all the chief priests and scribes in secrecy to discover where the Christ (anointed one) was to be born, which is clearly stated in the prophecy at Micah 5:2: "But you (Bethlehem) Ephrathah, the least of the clans of Judah, from you will come for me a future ruler of Israel whose origins go back to the distant past..." (Jerusalem Bible).
Disguising his true purpose, Herod then commanded the astrologers to go to Bethlehem, find the child and report back to him with the exact location, "so that I too may go and do obeisance."
Again, the star appeared to the astrologers and this time led them, not to a stable as tradition would have it, but  to the house where Mary, Joseph and Jesus were now living.  Rejoicing at finding  the Messiah, the astrologers paid  homage to Jesus, presenting him with gold, frankincense and myrrh.*
Despite their good intentions, the visitors had unwittingly  put Jesus in danger, having alerted Herod to his existence, and they were given divine warning in a dream not to return to the king but to return home by another route. Joseph also had a dream in which an angel told him to flee with his family to Egypt where the precious gifts no doubt helped them survive until Herod died the following year.  But not before committing one of the worst atrocities on record.
Furious at being outwitted, and determined to kill his rival, Herod ordered the death of all boys aged two and under in Bethlehem and it's surrounding districts. A tragic end indeed to the journey of the Magi.

+Tradition portrays the star as a good sign from heaven, "a divine pre-arrangement whereby....the child Jesus was honoured and acknowledged by the Father as his beloved son." However, the fact that it guided the astrologers first to Jerusalem and Christ's mortal enemy Herod, shows it was actually an evil  phenomenon, one of the "lying signs and portents" of Satan.

*On presenting Jesus at the temple for purification 40 days after his birth, Joseph and Mary were so poor they could only afford a sacrifice of "a pair of turtledoves or two pigeons as a sacrifice. This wouldn't have been the case had they already received such generous gifts from the astrologers.

Neurologist David Blacker on locked-in syndrome

 "I knew it was vital to get through to him, and make him understand there was hope" 

        

          Many of you may already be acquainted with Peter Coghlan, whose book "In the Blink of an Eye Reborn" charts his incredible recovery from locked-in syndrome against the odds.* His determined fight for freedom not only inspires many stroke and brain injury survivors, but also helps medical professionals understand this rare and frightening condition from a patient's point of view. 

         For the benefit of those involved in the treatment and rehabilitation of LIS, here is the foreword to the book provided by Pete's Neurologist - Clinical Professor David Blacker, MBBS, RACP.  

Professor David Blacker

          "I’ve been involved with the care of stroke patients for more than 20 years and have witnessed the full range of human emotions, tragedies and triumphs, experienced by stroke survivors and their loved ones. I have frequently shared in the grief, frustration and pain, and still find the task of delivering bad news distressing. There are however, some shining moments of glorious and spectacular recovery; Peter’s story is one of them. So often the media describes a patient’s recovery as “against all odds”, with the doctors pessimistically quoted as saying, “You’ll never walk again,” or “You will need to go to a nursing home.” Whilst some reports of Peter’s story have included such phrases, they were never from me; in fact, my interactions with Peter have always been the exact opposite. 

Peter was admitted to the ward in mid-2011. I hadn’t been involved directly with his initial care, but was soon aware of his circumstances and what had happened. I had long been a proponent of mechanical thrombectomy for severe stroke due to clotting within the large arteries of the brain, and have been involved with this therapy since the mid-1990s. It took until 2015 for this approach to be finally proven as a technique, so attempts to use it prior to that date were certainly regarded as ‘cutting edge’, or possible a little ‘cowboyish’. In situations like Peter’s, though, the decision-making is relatively simple - a very fit, active young patient facing death or severe disability. In my view, there was no hesitation in trying everything. Other clinicians might have been more conservative, particularly prior to the publication of the 2015 data, for fear of leaving Peter alive and facing devastating disability. In any case, Peter was transferred from a peripheral hospital in the middle of the night, to the major tertiary hospital, and one of interventional neuroradiology fellows, in conjunction with my colleague, made some urgent decisions, and proceeded to mechanically extract a lengthy clot from Peter’s basilar artery during the early hours of the morning. 

In this book, Peter describes in graphic detail the horror of awakening in the intensive care unit, and the gradual realization of his situation; the ‘locked-in syndrome’ (LIS). In summary, individuals with LIS find their fully active mind, trapped in a completely paralysed body, usually due to a stroke affecting the middle section of the brainstem; a critical section of neural tissue connecting the brain to the upper spinal cord. Typically, all four limbs are paralysed, and the nerves controlling speech, swallowing and breathing are affected. The patient is unable to speak, and observers may assume they are comatose and not aware of the surrounding environment. Communication can sometimes be established through eye-blinking, and other subtle facial movements.  One of the most famous cases is described in the book, and movie, “The Diving Bell and the Butterfly”. 

Shortly after he was transferred to the neurology ward, I was formally asked to consult on his case, particularly to assess his suitability for transfer to the neurology ward of the rehabilitation hospital, where I also worked.  Despite seeing hundreds of stroke patients each year, I had only been involved with four cases of locked-in syndrome (who had survived) due to stroke before I met Peter; but this was more than most of my colleagues. Two early patients remain highly dependent, one in a nursing home, the other with full time family care at home. Another patient had been spectacularly saved by thrombectomy more than 24 hours after symptom onset, and progressed through rehabilitation quite rapidly. I presented his case at a meeting to highlight what could be done. I contrasted his outcome with another patient who didn’t do so well initially, but ultimately underwent a long rehabilitation process with some gains, and returned home, and resumed a productive life. She came tantalisingly close to walking but, due to a number of issues, couldn’t quite get back on her feet. Around the time that Peter came in, I was feeling particularly enthusiastic about neuroplasticity and rehabilitation. The famous book written by Norman Doige, ‘The Brain That Changes Itself’, was receiving a lot of popular press, and I’d just heard him give a public lecture, affirming many of the basic principles that I’d been working with for years. Although it wasn’t really new knowledge for me, it was inspiring and exciting for the public and patients to have some hope provided. In the book, Doige describes the recovery process of a doctor’s father who suffered a severe brainstem stroke. That inspirational description included a phase where the patient crawled like an infant in the process of re-learning to walk. I felt “fired up’ by these descriptions and eager to apply this the next time I had a suitable patient with LIS.  

When I carefully reviewed the details of Peter’s case, I was quietly optimistic. His MRI showed that the damage to a critical portion of the brainstem known as the pons was incomplete. An important few millimeters of tissue known as the corticospinal tract seemed to be relatively intact. This region is the ‘wiring’ which transmits electrical signals from the brain to the body. It’s incredible what difference a few millimeters of damage, one way or the other, can make. What I saw on the scan gave me hope, but what I saw in Peter when I met and examined him gave me even more hope. I saw a fit, relatively young man who was determined. I knew it was vital to get through to him, and make him understand there was hope, and I tried to do this when I met him. I was surprised to later read in his first book, how great the impact of my decision to get him into the rehabilitation hospital was; from my side of the bed there was no doubt that was the only thing to do. It’s easy to forget how the things doctors say and do really stand out in the minds of patients. I had to be realistic though, and warn him there was plenty of work to do, and that it would be a long road. 

So Peter’s rehabilitation journey began. Typically I’d visit the rehabilitation hospital once or twice a week and attend a detailed meeting where the nurses and the therapy staff would give their reports on patients’ progress.  The highlight for me was seeing patients in normal clothes in the gymnasium working with the physiotherapists, rather than being stuck in a bed wearing pyjamas. I think that environment is crucial because it can be very inspiring and motivating, as well as tough. Patients get to see others in action as well, at different stages in rehabilitation, and with different levels of age and disability. Sometimes a sense of friendly competition arises; other times, disappointment can be the result. The team clinical psychologist has a crucial role to help guide patients and their relatives through the “bumps in the road”, that the long journey of rehabilitation must take when a patient has profound neurological injury like the LIS. Peter certainly had ‘bumps’ to face, including at least two frightening episodes of pneumonia.  But Peter overcame the challenges to walk out of ‘Shents’. The video of that still makes me cry! 

There was much more to follow for Peter after discharge from inpatient rehabilitation; in some ways the intensity of his efforts accelerated. Around this time I was quite enthusiastic about long distance running, and a member of the West Australian Marathon Club. Another member named Daryl Howel has cerebral palsy, and has famously competed in marathons and ultra-marathons around the world. This made me wonder what Peter could do, and somewhere along the line I challenged him to join me in the Perth City to Surf, initially planning to participate in the 4km walk. Peter’s determination of course quickly changed the target to the full 12km event. It was a wet and cold day when Peter and I completed the course, which was being deconstructed as we slowly covered the distance, but a glorious achievement and milestone for Peter. A couple of years later we went even further, walking 16km in the John Hughes Big Walk. On a beautiful clear day I think Peter could have walked forever! 

There are many other things that Peter has done including his generous support and help for other patients, and there are many more great things in his future. Peter’s inspiration also helps me show up for work every day. Stroke medicine is demanding. Most days I interact with patients and families who are going through the worst thing that has ever happened to them. The stress, grief and shock associated with stroke is enormous, and I admit that despite all my years of working in the field it still sometimes overwhelms me and gets me down. When it does though, there is no better way for me to find inspiration than to think of Peter Coghlan."  

Professor David Blacker  

*Available from Amazon

US: 

https://www.amazon.com/Blink-Eye-Reborn-Peter-Coghlan/dp/1727145593/ref=sr_1_1?crid=31K945I7HRSVN&keywords=in+the+blink+of+an+eye+reborn&qid=1569750666&sprefix=in+the+blink+of+an+eye+reborn%2Caps%2C254&sr=8-1

UK: 

https://www.amazon.co.uk/Blink-Eye-Reborn-Peter-Coghlan/dp/1727145593/ref=sr_1_1?ie=UTF8&qid=1537253272&sr=8-1&keywords=in+the+blink+of+an+eye+reborn+peter+coghlan