Feeling grateful

It’s late, I‘m having a few red wines and thinking about the last 10 years of my life:  What I’ve had and what I’ve lost, the places I’ve been, all the wonderful people I’ve met. I suppose I’m drinking to say goodbye to a chapter in my life.

Surprisingly, I‘m feeling happy and at peace with myself, even excited about what I can achieve this year, where I might be this time next year – hopefully not 6 feet under but, if I am, it’s been nice, ok “thanks for reading”.

I was thinking about the shit I’ve had to deal with, wondering why am I not in a sodding asylum, sitting in a corner rocking, hearing voices! Hahaha ( I hear dead people!!)

I guess my sense of humour pulled me through; thank God I had one! They say you can go two ways with a stroke – Happy or angry.. Although there were times I was frustrated and angry, for the most part I was on the happy side. Feel like I’m back to myself now –you know, back to ME. I feel relaxed, wiser, more content than before. A little scared of the future maybe, but only because I thought it was over! I thought cancer was the downside of my life – stroke was not in my diary, you see! Hahaha!

All I wish for this year is peace. Just leave me alone!!!! Let me work out and finish what I started!! Something I need to stress to others following my progress – I have PUT THE TIME IN! That means trying many many hours a day for years: 16 hours a week in the pool for a while, hours just flapping my arm! Sounds daunting, I know, but you don’t wanna just do 1 hour for 10-20 years, do ya?

Hit it hard and regular and knock the b***** in half.
Eat well, avoid shit you can’t burn off (cakes n sugar) and try regularly.
Here’s what I’m talking about:
To squeeze hold of a pen took 1 month –  hour every night just to hold a pen, man!!! Then lines of letters – letter ‘I’ for me, as it was easy; I ‘m talking about an A4 page full of ‘I’s’! Then a b, then a ‘c’ – pick a letter n practice like a school kid; after all your brain’s learning again, you’re growing muscles all over again. And just cos you can’t do something doesn’t mean you’ll never do it. Every time you try, a little signal is working.

Think of a muscle like a heartbeat deep inside your finger, a heartbeat that grows with every thought. Then one day it should start to move finger – just a millimetre at first but that’s all you need to know things are starting to kick in again! That’s what happened for me!

I thought and thought about pushing that finger along the surface it was on – or trying to touch my thumb with my finger as they were close – and it happened! I did try for hours n hours mind!

That’s what I mean about not rockin’ in a corner. I often can’t have fun anymore cos I’m too busy thinking about you locked-in people out there. I want to give you the answer – but the truth is, that’s what I did. Just keep trying, it must work!!!

Think this wine has gone to my head!! Only had 3 an’ all!!!! Embarrassing!! Some girl’s gonna take advantage of me!! Best be careful, ey !! Hahaha! Yeah, dream on Pete!!

I just wanted to say to all strokies out there (especially the younger folk): Don’t BELIEVE everything you’re told.  I said it before and I’ll say it again – You were made a human, we are special, our brains are wired differently. We are the superior species!! Look at the world! Look at what we can do!! We are amazing!!!!!

If someone said, “Oh no! We’ll never get to the moon” and believed it, then that giant step for mankind would never have happened. Nor telephones or light or transplants or resuscitation or artificial insemination! We’re growing organs, for Pete’s Sake! And body parts!!!! If you told a doctor that 50 years ago……Hahahaha!
We are AMAZING!

We can do.
You can do.
BELIEVE in you!
With your will, your brain can twitch!
You just gotta keep trying.
Stare at it!!! Focus!!!
Talk to the brain in your finger,
“Come on you little tw*t, come on now!!
Move, you little ******

Just put the time in. It’s better than lying there waiting for something to happen, ey? Course it is!! Okay, it’ll make you mad but one day you might thank me!! Give it a try this year and let me know if it work. Tell me if you know a better way – we must share techniques.  Lets come together n smash locked-in syndrome!!!!! SET PRISONERS FREE!

I wish you all the best this 2015 – May this be YOUR year!
Better stop drinking now, I get too passionate!! But then, I write better when I drink. May be I should be an alcoholic  – Yep, definitely a good  career move! I’d be a millionaire!  A proper Billy Blue Hat writer – I haven’t got a clue really! Hahaha!

I just write cos it’s helps folk, I think. And, like I said, no one else listens to me -” just shut up and drink up, Pete!!!” Okay!!
There go the voices again!
Best go !!
See ya !

Beware of Secret Santas Everywhere!

pete santa

This was sent to me by a friend who wishes to remain  anonymous.   Hope it makes you smile!!!!!

Hi Pete, hope you had a good Xmas…I thought this might brighten your day.

Whatever age we are,  we all love Santa don’t we??  Or do we?…..this year Santa was Secret.  We were all given a name and a fixed price to buy a gift in secret.  We all knew each other so should be easy you would think????  Not So !   Either Santa really hates me despite being good all year,  or my present-buying “friend” ran out of inspiration!

Now,  I am all in favour of recycling. I’ve had gifts before which for one reason or another I have been unable to use,  but knew someone who would love it.   My Secret Gift ran as follows:   Beautiful  gift box which appeared to contain lots of little goodies.  I could see little chocolates which looked really cute and a bar of my favourite chocolate.  Great so far?.  I’m. Diabetic!   Next came the really useful good stuff.  Wait for it,  I know the excitement will be killing you!  A used Lip Balm….    An already used bottle of Shower gGel. ( it was a very good one,  but only half full)……..antiseptic hand wash. (Hospital grade no less).  ….a partly used body scrub….  Maybe I need to be showering more or use a new deodorant?

The whole experience has put me off Santa for life. No wonder little tiny kids don’t like him. They. Know before grown ups what’s in his toy bag!!! Every time I see a Santa in the future I’ll be thinking “what did I do wrong?”  Even worse though,  next time I see my friends I’ll be wondering which one of you hate me so much?

Apart from that,  I hope to remain as unscarred as possible before next Xmas.   On the whole,  my day was lovely.  I had lots of fun, and yes I did receive some nice little gifts as I hope you did too.   Lots of love,  take care.  See you in the New Year.   Xxxxxxx

It’s the time you put it that counts – something people ain’t getting!

Question from a stroke sufferer:

“I like your book very much. My recovery from stroke is slow – still have no use of left (my affected arm/hand) yet. My stroke was almost 16 months ago. Can you share what worked for you? thanks and happy New Year to you and your loved ones.” – Ostro

My reply:

Ok, I’ll try.

You have to seriously put the hours in; start with trying to hold a pen. It took me weeks to do this as my hand wasn’t gripping, but when I did it felt like a lifetime! I then had to try to write an A4 page of the letter with a fine liner – Bic pens are way too hard!!!!

This may also be too hard for you at first, so get some Play Dough and maybe at night while you’re watching TV or chatting, roll or squeeze the dough as best you can. Don’t give up if nothing happens straight away – none of these things come easily – that’s why many people give up, see!

Ok, it all might seem too hard, but I go on this theory: that when you try, a flicker is starting to develop deep inside. It may take months or many months but it IS growing imperceptibly and then one day it may just surprise you, allowing you to move your finger – even by a millimetre! That’s progress!

iPads may encourage things also!!! But it’s the TIME you put in that counts – something people ain’t getting!! PUT THE TIME IN.
Concentrate  for a few hours or as much as you can every day – doesn’t matter how much, as long as it’s regular. BE CONSISTENT with it – this is part of your structured life now (that’s if you don’t go crazy first!)

Try n go with the imagination: Lift….push…..push…..lift…push….maybe just a finger. If you can’t see results, it doesn’t mean it isn’t doing anything. I wish- soooo wish – I had shortcuts for you but there is no easy way out!! If there was I’d still be married with my speedboat , 4×4, dog, my old place – Everything!!

You have to say “Right for the next year (or however long it takes) I’m gonna do half an hour or an hour every night – 365 hours a year!!

Good luck, Mate and don’t give up! Really I can feel your frustrations, but YOU CAN DO IT! Set an agenda: Exercise pool for the arm at first,  then peanut-picking at some point next year – it’s like going from 1k to 50k! And remember, muscles grow slowly.
Hope my blogs may help you in the future……just KEEP GOING!

All the best, Ostro!

PS. A stimulus machine may also help, but still go with the movements! Frustrating ey!!!

Remember: “What you do today can change tomorrow”

image (57)

It’s that time of year again – it comes around quick, ey!!
Really that hope all who follow this blog have a goal set for 2015
Mine’s to run!!! Tall order, but we shall see!!
Hope whatever it is, you win!
Don’t stop believing, don’t stop trying….

And remember, “What you do today can change tomorrow!”

God bless all you fighters out there!!!

2015
“Bring it on!!! ”
You’re going down!!!

Watch Out! A stitch can be deadly for LIS patients

To my friend Lou whose father, locked-in after stroke, is now suffering from a chest infection:

For me it started with a sharp pain as I was getting pushed back from therapy one day and I just had to tell Jade. It was like a stitch you get when you’ve been running….only I hadn’t been running for a long time!

I just knew something was amiss; so did Jade who reported my stitch to the medical team straightaway. In turn, I was immediately booked in for an X-ray which showed I had a nasty bout of pneumonia. Seems I’d aspirated food or fluid….whichever, something had gone down the wrong way, ending up in my lung. Antibiotics worked (thank God for me!) but they can become ineffective after a while as the patient grows immune….Just something to watch!

Oh and one more thing used to piss me off: I couldn’t fart!! Seriously, I couldn’t pass wind in my wheelchair so gases built up and when they hoisted me (craned me) upwards….well! Talk about Vesuvius! The pong was incredible – it could clear a room with all the drugs I was on!! –  permeating through the ward like you wouldn’t BELIEVE, faster than a nuclear bomb!  Something else to bear in mind! The build-up of wind gets painful ey!!!

You don’t have the muscles to squeeze!

Apart from that, being in the chair is good for the neck, strengthening it over time – it also helps the back, the chest and obliques. Of course, you can’t just go straight into a wheelchair; you have to build up the time spend in it so your body can acclimatise.

Good for me or not,  I hated being in the chair; it hurt my ass (No muscles, see – just bone! Arrrrggghh!) So it was a case of building up gradually to 15 extra minutes a day.

If I think of anything else, I will get back to ya, Meantime, good look with that bloody chest!!

I still remember coughing up too, through my trachea and it was the most disgusting experience ever!  Ooooh God! I feel for him and all other LIS sufferers.

Unfortunately, you can’t be there to make this happen, but I hope you get a team of nurses who can go the extra mile like mine, ‘cos you need to be watched in the chair. A few times I fell to one side and couldn’t correct myself, so was hanging helplessly to the left for half hour! It hurt and I couldn’t shout out – I just cried inside and prayed to God for someone to come!!

You can’t be there all the time but, for the benefit of any medical staff reading this, in those early stages I think locked-in patients should be monitored with 5 -10 min checks, even if they’re just a quick head round the door. That’s my opinion anyway. I hope things go well for you!

For more information about locked-in syndrome recovery, check out my book, “In the Blink of an Eye”, available from Amazon.

UK – http://www.amazon.co.uk/Blink-Eye-Peter-Coghlan/dp/1484903501/ref=sr_1_1?s=books&ie=UTF8&qid=1368088331&sr=1-1&keywords=in+the+blink+of+an+eye+by+peter+coghlan

USA – http://www.amazon.com/In-Blink-Eye-Peter-Coghlan/dp/1484903501/ref=sr_sp-atf_title_1_1?ie=UTF8&qid=1371990925&sr=8-1&keywords=in+the+blink+of+an+eye+by+peter+coghlan

AUS – http://www.amazon.com.au/Blink-Eye-Peter-Coghlan-ebook/dp/B00COL4JMS/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1419084701&sr=1-1&keywords=in+the+blink+of+an+eye+peter+coghlan

 

 

Help for LIS patients: Swallowing & Communication

Once in a while, relatives and friends of LIS sufferers contact me, desperate to know how to help their stricken loved ones. The following message is my response to one family whose father has been paralysed by severe stroke. Despite a rather downbeat prognosis, he is obviously aware of things and attempting to communicate through his eyes.

I hope I can help.  

I’ve been trying to remember that initial locked-in stage, and will try to recall what truly helped me at the time.  

As you could imagine, I was so scared – frightened because no one could tell me if I’d be okay (which is obviously the same in your father’s case) because, at the time, the medical team simply didn’t KNOW what the outcome would be! I must stress that I’m not a doctor (obviously), but will advise you of what I believed helped me though my experience.  

Firstly, you have to put faith in the nurses and doctors around you. As locked-in syndrome is still extremely rare, medical teams don’t always understand the condition, yet the following points will help them also.  

  1. Your visits should be as regular as possible, to assist the nurses who get little time to sit and communicate so can’t find out what he may or may not need. Start by putting basic information and a list of his likes and dislikes on the wall. For example:  

“Hi, my name is ,,,,,,

I like my fingers straightened regularly and my arms outside the covers at night.

I don’t like being left with my arms in such or such a position…”  

That sort of thing.  

You’ll all be wanting to help, of course, but first he has some big tasks to overcome, such as swallowing, maybe even his own saliva, while getting to grips with his head balance will be sooo hard. And it will also be difficult to get that chest infection under control.  

You said he communicates ‘yes’ and ‘no’ by blinking….I wonder if the word board I used may help. I have sent it to you but it’s on my web page: https://petercoghlan.com/2014/06/19/to-all-you-great-nurses-please-please-learn-to-use-a-wordboard-for-locked-in-patients/  

He really has to get to grips with some form of communication, although it will seem stupid to him and he may even reject it to begin with. However, the wordboard will be the only way to get through this. Your job as a family is to introduce the wordboard and slowly work with him. Remember, he will get fatigued so may only manage 1 word a day, then 2 words and so on. Blinking and thinking at the same time, plus the whole shock of his situation, can be so tiring, see?

Maybe, you could print off my blog (above) for the nurse’s office and to keep by his bed – that’s if he wants to use my wordboard.  He may choose other methods that the speech therapists will show him.  

Learning to use the board was everything to me. 

Words like 

. Pan (toilet)

. Pillow (not right) 

. Wee (bottle) 

Then it progressed.  

It will take a long time to hold conversations via the wordboard and there will be frustrations on both sides. Remember, the brain is in shock so everything may take some time to stabilise. Double vision is normal. I seemed to have 2  clocks in my room for a week, I think!  Learning to control pee may also take a long time.

All I would say at this stage is: Have a progress book, like a log or diary; keep positive around him; get the communication going; visit regularly and try and find out what’s on his mind. (I wanted more sleeping pills at night and to have boxer shorts on)  

At this stage you can only help him through regular communication on the wordboard and being there for the tears. The crying will haunt you (I cried every visit….well, come to think of it every day for 4 months, and then at least once a week for 4 years!) 

I hope my book helps more than I have in this message – I’ve put a lot of memories deep into the back of my mind, see…..had to! I couldn’t sleep for 3 and a half years!!

If you want to read my story quickly, you can find it on Kindle and there’s a sample chapter on my web page:

https://petercoghlan.com/2014/04/15/in-the-blink-of-an-eye-by-peter-coghlan-sample-chapter/ 

God be with you and all your family. I pray my bit of advice can help. The same goes for anyone whose loved one is locked-in after stroke or brain damage. 

Swallowing is the most important factor at this point, followed by communication – both of which will present huge battles. Take one day as it comes and look after yourselves – you’re no good to him if you get sick. 

All my heartfelt hopes are with you at his worrying time! May your loved one make a speedy recovery!

Best wishes.

Pete x 

 

Blog for the Strokies – Use your emotions to drive you on!

Aaaaarrhhhh bloody hand!! Release damn ya!!!

Bit angry this morning….well more tired and frustrated  really; I get like this after big sessions in the gym. Last night I was buzzing , I had beaten my record on the cross trainer, so that was good. I felt like I was zoned out last night, on Planet “Open a tin of wup ass!”

I was raging!! On fire!! Well, for me! Pissing with sweat. I was thinking about this whole journey – “everything” – and was groaning to myself, “ When will it ever end?!! The more I thought about it, the more mad I got mad and the more I sweated!

This morning I feel so sore, so low….mind-frame’s not right. That’s why I’m writing – putting my thoughts down seems to help a lot. 

I started punching my right hand before – Huh! As if that’s going to help, but it made me feel better for a whole second!! See my damn hand still has tone – something us strokies can understand. It stops you reaching for stuff or opening the hand fully, you see! “Soooo f’in annoying!” Sorry for swearing, but there’s no word for it  – damn and blast just won’t cut it!! 

I’m stretching a lot; half hour last night on the straps and I use my stimulus and try n go with it on fingers but it just won’t piss off . Tone!!!! 

See, I’m not always positive; some days are a real struggle for me. Mentally I have to really fight. It’s soooo hard , especially when you’re dealing with other shit in your life too: Breakups, bills, money – you know? Life!!!

But after a stroke, those extra things when all you want to do is try n recover can be so head taxing!!

I am sick of cleaning now too. It’s been good to get my body going, but I think I need to retrain after Christmas.  I really want to help now, you know!! Do something useful. After this journey I feel I must!! No longer living in a bubble, I now see the world so differently, ey. I am helping, but a career would be cool!  

Gotta try n take it easy more, but I just can’t!! This obsession has me always pushing; I am so close – Well, close to WHAT? I’m walking, talking and grateful for that, but it’s got me now. The more I do the more I want!! Human nature, I think! AT least it’s better than sitting around feeling sorry for myself….that’s not gonna do jack shit!! 

My attitude so far has worked. I think back sometimes to life before the stroke and though I wanna cry, I use it to get mad instead!! Good advice….

Use your emotions to drive you on. All the pain, the frustrations, the memories…. 

Use ‘em, use ‘em all! 

I get angry and train, but don’t train too much like me – “Ouch!!” Oh well, feel a bit better now; whether you read this or not, I feel better!! 

Best crack on!!!

See ya !