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 ! 

 

Feel like giving up? DON’T!

“What’s the point??!!”

Sometimes I wonder -as a lot of strokies think, I expect.

“What’s the point? It’s just too hard!!

Well if I had a dollar for every time I thought that, that studio apartment overlooking the beach would be well and truly paid for, ey!! 

“I just can’t get that muscle, just can’t get it working!”

The endless crying; Fits of frustrated anger; Depression trying to sneak in; Oh yes! I’ve been there!! But, after a long time of trying, things do surprise you. Progress might be small, but it’s still progress! 

My calf has been the latest to change. Well, I’ve been doing a hell of a lot more training since me n the wife split. Funny – they say break ups make body builders!! (When you think of body builders you think big!) But I think I qualify after 5-10 hours training every week!

My point of this blog is to try to reach anyone out there who has thrown in the towel or feels like giving up!! Please don’t!! If you’re upset and feel you just can’t do it, stop, chill out, take a deep breath……and start again tomorrow!

That’s all you can do. Shits ya! but your body can only do what it can do! However small the flicker…..it’s still progress!  

Now let’s get practical. I have some tips that I hope might help:  

*Protein powder morning / afternoon (fights fatigue) 

*Raw broccoli ( I BELIEVE helps wellbeing) 

*Spoonful of malt extract  – before exercise!! (seems to help me)  

*Peanuts or sultanas (helps arms, grip, pinching, control) 

*Kidney beans, brown pasta, tuna (really powerful lunch)  

*Bananas ooohhh yes! Every morning, before n after training. I blend ‘em up with protein powder 

Next, these are things for the swallowers out there! Don’t go killing ya self (can I laugh  hahaha!) Well, I’ve been there so I think I am allowed the odd chuckle, although I know when you’re there it’s not funny one bit!!!

Cold jelly got my swallow going, thanks to my amazingly wonderful, well trained, super speechy Robyn X (pay me later! xx) Then a gradually thickened diet for a 6 month period. I was a pig so swallowing came on fast!! Actually I never got chance to thank Devonshire Ambrosia Custard for their major part in my recovery; I loved it so much I couldn’t stop eating it. Tin after tin, spoon just couldn’t get to my mouth fast enough!! Devonshire Ambrosia, in my opinion, is THE BEST custard in the world! If you don’t BELIEVE me you’re not a pom, ‘cos we’re lucky enough to know about this little pommie delight, proving that some great things come out of that little island.

Like HP Sauce; Weetabix (not Wheat Bix); Chocolate Hobnobs,; Jam Roly Poly; Caramac!!! Army n Navy’s (Ohhh I love those!) just to name a few! Those treats stay with me forever! You just can’t take them out of an English lad.  

I still can’t get into Aussie traditions like beetroot on a burger. I was devastated when I was served a burger with THE LOT! With a dirty great big piece of beetroot in the middle of my bun!! Yuk!! I was like what the ****! You can sling that n all !!!!! thank you very much! Beetroot!!! 

Where was  I , hahahaha……No, I love Perth really, except when it’s too warm and everyone gets too angry!! (in cars I mean!) Road rage is a joke here. I saw a news flash of a man opening a car door at traffic lights n smashing the driver with his skateboard! It made me sick!! You know they now sell road rage cameras for your dash now, so you can catch em!!! How’s that!! Unbelievable, hey!!

I had one incident last Boxing Day, waiting for a disabled bay to come free (AS THERE’S NEVER ENOUGH!! ), when this big butch lady pulled up beside me and shouted so angrily at me (she was literally foaming at the mouth):  “You don’t own the f’in’ car park you know!” 

I grabbed my disabled sticker, stuck it in her face and said, loud as I could: “Well you get my f’in’ shopping for me then!!!”

What a bitch! Lucky she didn’t get out n punch me, as I was quite weak then. Stupid of me really- but I was so mad!!

Hold on a minute- this is a blog not a book! Sorry I get carried away! Hahahaha!

Point is: Don’t give up – it does get better, depending on how much you put in – and stay positive. Eat positive. And don’t stop trying, even if you can only manage an hour a day.

Wish I could fight for ya but you have to do it yourself. And you WILL!!!

You CAN improve!

 diet

GORGEOUS GRUB!!

Pte 2505 8396!! Feeling proud, Sir!!!

Army

A month or so ago I thought life was really never gonna stop pissing down on me, ey! But recently I’ve been looking at things more positively.  I have a new social life which I had to force at first, but now my diary is full: Friends keep asking me for dinner and my lifestyle’s busy too. I never thought I would could be like this again – I mean it’s been years of hell, years of struggling, every damn day in some way, trying to pull myself away from depression.

I hate to think how many hours I’ve spent staring at walls with my arms burning, or how many different movements I’ve done to get properly mobile! I still scream in the car!! And pull funny faces! Actually, I was doing some gurning at the traffic lights the other day when I glanced over to see a kid staring at me: “Mum!!! Why’s that man pulling funny faces?” I just know it was something like that!!! Just know it!! Hahahaha! These days people just ask me how I hurt my leg; I never expected to walk away from this with just a limp……and even that’s improving slowly. I didn’t question where I was in my recovery; I just kept focusing on getting further…..

I lost my wife, yer it cost me for sure! Maybe I should have focused better on marriage, but it’s not that simple, not when your sleep pattern, social life- actually everything! – has to change. You wash up leaning on your bad leg, eating with your shit hand – to name just 2 problems in a few million!!!

I won’t even begin that list….Endless even going for a piss! I couldn’t let myself just go, as I stopped mid-flow at least 5 times to build up my prostate, or whatever the muscle is called!

To pull out of this, I had to be a very obsessed – no, an INSANELY crazy man!! Now I’ve reached the point where I’m finally chilling out , back to my old self (sort of) minus the fags ‘n’ Scotch; Well I had 5 Jacks ‘n’ Coke (Jack Daniels) last Friday night (and they were yummy)….. but I try to keep it in moderation now. We had a bloody good scream, so I guess that’s good for ya too. I haven’t lived for a long time – forgot how to – as my obsession to recover took its toll. On reflection, I’m surprised Jade didn’t leave me  a long time ago, ey! Hahaha!

I always wonder if the army helped me get through this, ‘cos soldiers just have to complete the task at hand, we don’t give up. Giving in was not an option!! But trying to keep your wife happy when you have such a task – a task bigger than life itself – is too hard for many couples to cope with.

Whatever….I’m gonna be continuing on this obsession, even now. Obviously I want to see how far I can get, see if I can be all I can be! Many out there will be thinking my way: “See how far I can get. What can I get back?” Everyone wants to try, you know.
Sorry, I’ve lost the point of this blog, but I guess what I am trying to say is:

If anyone out there finds themselves splitting up, remember locked-in syndrome and strokes generally are hard (no DAMN hard) for partners to deal with and you must forgive them if they move on. Many just can’t deal with it; they’re lucky they can walk away!!

I wish my X all the luck in the world and, although I miss the memories,  I think things will be fine!! One thing’s for sure: You can be YOU – a new you, perhaps, but you can learn to love the person you’ve become and so can others!! I’m now learning that – feeling very optimistic about my future indeed! That’s unbelievable from a pair of blinking eyes in 2011. 4-5 years ago, ey! My God! “Did it even happen!!!!” I thank God I believed in myself no matter what the cost!!

Pte 2505 8396!! Feeling proud, Sir!!!