A little video update from me…

Keep trying and keep the hope. Don’t ever give up.

Even when you think you’re nearly there, there’s still a long way to go. But you have to keep waking up and keep doing the best you can. Keep trying and keep the hope. Don’t ever give up.

Peter Coghlan gives an insight into his inspirational recovery from locked in syndrome where he was completely paralysed. This video shows what he put himself through!!

Three cheers for my mate Ryan Marron!

Been thinking about my old Shenton Park room-mate, policeman Ryan Marron and his lovely lady Toni.

Ryan’s battle began 3 years ago while on police duty up north in Halls Creek where he was WAIT FOR IT….

Bitten by a mosquito! One bite and he contracted Encephalitis, a very, very rare but deadly condition which paralyses and affects all areas of the brain, including speech, memory and learning functions.  (At least that’s just what I’ve heard – but then, I hear stuff and only remember 50%! Hahaha!)

Anyway I’ve obviously been following their journey and we keep in touch – Jade and I have met up with Ryan and Toni a few times over the last couple of years. The change in Ryan has been easier for me to see, as there were 6 months or so between our meetings.

And his brain is fighting back!!! Ok, not fast enough for Toni or his parents and in-laws who have all been so supportive.

But he’s fighting back!

When he was wheeled into Shenton Park alongside me, his eyes were like those of an old-fashioned teddy bear, little black buttons rolling around with no control whatsoever. Unaware of his surroundings, for some reason he kept singing Foo Fighters – Every bloody night!! Drove me INSANE!!!! RYAN!!!

You owe me a few pints for that someday, Mate!!!

But I digress. I popped in to see the family the other day; Ryan’s Mum Sandra had made me brownies….Oh yeah!!!! And while I was scoffing, Ryan was wheeled in by his carer.I couldn’t believe it! He looked at me straight in the eye, no problem focusing, was clean-shaven and a real handsome bugger, hey Tony! Definitely NOT the same guy I walked 7k to raise money for when I came out of Shents!!!

Although he still doesn’t like to try and talk with everyone, he’s making sounds now – his mum showed me an iPad they’d used to communicate and he was spelling better than me (which isn’t that difficult! Hahaha!)

RYAN WAS ALL THERE!

Now, he just needs to get that body under control and work on his speech.

Two years ago, they all did a long bike ride up north accompanied by police officers (well, someone had to keep them in check!) and raised shed-loads of cash – over 150,000 dollars, I  think – to send Ryan to Chicago for treatment.

As for Toni, she has never given up on her man; she intends to stop at nothing to get him right, just like my Jade. In fact, next to my wife, Toni is one of the most amazing women I know.

Here’s wishing you guys all the best for the future. Together, you’re quite a team!

LOOK OUT! Ryan and Toni are unstoppable!!!

Love you guys

 

Referred to Rehab? Where do you go from here?

As LIS is an extremely rare condition, most medical teams have little knowledge and even less experience in dealing with it. In South Africa, for instance, only a couple of cases have ever been presented, so, when a new patient was moved to a rehabilitation inter-care centre recently, his brother, Emanuel, contacted me to ask for guidance. Here is my reply which I hope will be encouraging and helpful to all LIS sufferers and your loved ones.

‘Hi, Emanuel. I’m really glad your brother has been chosen for rehabilitation, which is a really positive step forward.  When I got to rehab at Shenton Park, no one there was in the know either!!

I was a rare case, the first locked-in patient my excellent physiotherapist Alysha had ever come across. By this time, Jade and my Mum had organised a list which they posted on the wall by my bed for the benefit of the nurses. To keep this list up to date, they’d use the wordboard (or alphabet board) every day to ask me what I needed. Individual patient obviously have his/her own requirements, but here is a brief rundown of mine:

Hi! My name is Peter.

This is for all you Nurses!!!

PLEASE READ IT.

Thank you

  • Cream on my lower back every morning, please
  • I blink my eyes to communicate –once for ‘yes’ , twice for ‘no’
  • The first question I need to be asked is ‘Toilet?’
  • I like a pillow at the bottom of my bed, please, to stop foot-drop!
  • I like my pillows to be butterfly
  • Please use my wordboard*

*(Give a brief description of how the wordboard works – yours may be different to mine. See my post:

https://petercoghlan.com/2014/06/19/to-all-you-great-nurses-please-please-learn-to-use-a-wordboard-for-locked-in-patients/

This page includes a picture of my own wordboard, which should give you some idea.)

The nurses will all find it hard to get to grips with at first, but explain that this is your brother’s only means of communication and maybe show them my blog or even print it off to display on the wall by his bed. The biggest battle is getting everyone on side, so the easier you make it for the nurses; the more likely they’ll be to use it.

If your brother can understand you, tell him my secret:! To be nice! If you’re nice to everyone, they’ll be nice in return, taking care of you better and going the extra mile. Remember, it will help!!

No one wants to pick up a wordboard if they think you’re going to waste their time or make unpleasant remarks. A few compliments will do wonders, i.e. ‘You smell nice’, ‘I like you’, ‘You’re so kind’ etc.  At the end of the day, they are your guardian angels and you must get them on your side. Visitors can do their part by bringing the occasional gift (a tray of cakes is a good one!) After all, the nursing staff is going to be family from now on.  Don’t forget also, that most nurses are really pushed for time, rarely having enough to do their rounds – but sometimes they’ll go the extra mile, if you go the extra mile also!!

As the months pass it may seem less strange for your brother. Getting into the routine may take time, but I’m always here for you and hope my own experience will be of help. For me, settling into rehab was terrifying but hopeful too. It’s the not knowing that’s the frightening part! God, there were some tears, I can tell you!!! And, please give him this message from me:

“No matter how scared you are, you must find that inner strength to forget ‘what was’ for now and try to concentrate on ‘what is’!! Every day now is going to be a battle, from sunrise to sunset. Just let the nurses do their thing, try to be nice to them and they will help you, they are your arms for a while. Let you brain recover, and in time you’re going to improve – to what stage no one can say, not even the specialists. And, because no one really knows, don’t listen to negative opinions. And don’t waste your time asking EVERYONE – because, even if they knew unlikely), they’re not allowed to tell you!

Take one day at a time. I feel for you right now, and I do hope you make small gains quickly. Oh, and it does no harm talking to God, either, as He was the only person I could talk to in my head.  Your communication will be hard for your brain right now (it will seem a joke), but you must work on getting some form of  communication system going, as this will be everything for you, your family and the medical staff.

All the very best my friend There are plenty of us out here for you when you’re ready!!! So hang in there and think about wiggling them fingers now. Remember, THINKING is DOING! If you can’t move at first, don’t be put off. Even TRYING will send the signal from your brain to the rest of  your body and, over time, that will become stronger until one day you might just twitch your finger or thumb!!!!

Hang tough and try to be brave….. AFTER A DARNED GOOD CRY!!!

I‘m here for you any time.”

Emanuel, I can’t imagine what your family is going through! I was the other side of things! Try to be positive with your brother; this one’s hard – but don’t cry around him if you can avoid it. Make him laugh whenever and however you can, as a positive outlook could be the key. I don’t know for sure, but after he’s into the daily routine the crying will subside and, with your help and the right motivation, things will change from “I can’t move!” to “I will beat this “!!!

The shock to the brain and the body is so bad, it may be many, many weeks or even months for the crying to subside. The doctors will put him on anti-depressants for sure!!!

Please keep me informed from time to time and remember, I’m thinking of you all.  God be with you, your brother and all locked-in sufferers and their families.’

A natural cancer treatment that’s claimed to be 10k times stronger than chemo

If you’ve read my book, you’ll know that my brain stem stroke was not my first brush with life-threatening illness.  I was just approaching my 21st birthday when I was diagnosed with Hodgkin’s Lymphoma – the aggressive lymphomatic cancer which ended my military career.

One of the most traumatic effects of chemotherapy was the sudden hair loss. Believe me, baldness may be acceptable in middle age, but at 21?!

So when I read about this natural remedy, I was totally delighted.  Sour Sop from the Graniola tree is believed to be 10,000 times more effective at killing cancer cells than chemo – without the nausea and loss of hair!

For more info about this exciting breakthrough, click on the link below. What joy to think no one may ever have to suffer the side effects of conventional cancer treatment.

http://soundofheart.org/galacticfreepress/content/10000-times-stronger-killer-cancer-chemo

To all loved ones of a locked-in sufferer – just BE THERE!

I’ve recently been in contact with the close relative of a locked-in patient in a hospital 1,500 km away who doctors say will never recover. This is my (slightly edited) reply and I hope it will support and encourage everyone with a loved one suffering from this terrifying condition:

“I hope your brother finds a way to break out of locked-in syndrome. I had lots of regular support at my side to stop me going crazy and help me communicate.

If you want your loved one to increase his chances, I recommend moving closer.

I can’t stress how important your daily visits will be to him. No amount of visits can destroy his chances of recovery. On the contrary…..

Talking, crying, laughing, more crying – the early day are simply hell!

To get things moving, if he can, he needs you, or someone close to him. You may feel helpless but your just being there will do more for him than you could possibly imagine!

I simply couldn’t have done what I have done without visits from my loved ones; every day for 4 months then, when I had improved, every 3 days or so.

It may not be possible for you, but I’m just telling you that’s why I managed to do what I have done.

I hope and pray things improve for you and that your loved one makes a full recovery.

Support from friends and family is the key!”

 

 

Midnight horror! What’s that crawling up my arm?

Horrible night. I can’t sleep because of the storm, and these sandbags on my wrists are so uncomfortable. If I could toss and turn I would, but all I can do is lie here, listening as the rain lashes against the windows, washing in all kinds of uninvited guests…..

One of which is crawling up my arm!

Swivelling my eyes, I expect to see a spider, which would be bad enough. But this is worse! A red millipede, an absolute monster, three inches long at least, and it’s heading for my face! Frantically, I ring the buzzer with my head – three times for Emergency!

The nurse comes running and picks up my alphabet board. All I really want to do is scream, but instead, I have to keep one eye on the monster while trying to spell “m-i-l-l-i-p-e-d-e”. I give up and just blink the word “s-p-i-d-e-r” instead and the nurse’s face turns whiter than chalk! “S-p-i-d-e-r  a-r-m  l-o-o-k” I spell, but by now it’s gone round the back of my neck so the nurse can’t see it at first. Gingerly, she pulls down the sheets, one at a time, hoping no doubt it’s all in my imagination. But no! Now she sees it crawling on my chest and screams at the top of her voice, loudly enough for the both of us. “Oh God!”

Brave woman! Face contorted with disgust and fear, she manages to snatch it up and throw it into the waste bin, quickly covering it over with a board to stop the monster millipede escaping. Catastrophe averted!

Extract from “In the Blink of an Eye” from Amazon