Roller coaster

Hi all once again thanks for all the birthday wishes and the fundraising that has been going on I would not be here without the support of everyone back home. I love telling people how I'm here with the help of my community and friends and it makes me very proud

Its been a bit of a roller coaster the last few weeks. finished the loco-mat and was on the parallel bars with the right leg splinted. But my doctor was trying to manage my expectations so he had a hard chat with me detailing that walking around the house or to the car to work and from work to the car is the best i can hope for. so as you can Imagine I was fairly down for a few days

As time went by and I thought about it! he said it himself he can only say what he thinks may happen and he's been wrong before. there is still so little known about spinal injures and every injury is different .
So in my head I just said fuckum I'm doing this! I'm going to get more than that and I'm going to get further than that even if it fuckin kills me ill know when I'm done, I will not be the same as before I know that! but I'm not stopping until I know I have done all that I can. even when I go home I will not stop, part of my rehab for me physical and mentally will be making surfboards this will be using all the effected areas standing moving using my hands and core. I have no doubt the boards maybe shit in the beginning but that's not the point.

You have to remember that I'm effected from just bellow my nipples down which is my core and part of my triceps are week more on my right, my right hand is effected, my left hand and right hand are numb bellow the injury (nipples down) is also numb I feel but its not the same and never will be I can fell temperature a bit and pain but its in the distance.

What I'm trying to get out of Guttman? It's to activate the part of the brain that sends signals of movement to the effected areas by trying to move things, by walking on Zimmer a bit swimming a bit, moving around a plinth sitting on my ass and pushing up with legs and hands Twisting turning getting on my knees and balancing, standing with the right leg with left splinted and lots more! all of this sends signals from the brain through the spinal cord and we are hoping for the spinal cord to re-root the signals past the injured area by repetitively sending the signals... hopefully my spinal cord is not dyslexia too and I get the results:-)

The head consultant here was more positive when Maite and myself spoke to him he was saying the more I do the spasticity should lesson over time, the stronger I get and the more I move should reduce it,not totally but some what. he also said that the physiotherapist are the once that get this process going, I find them amassing! if i get an idea they will try it if I ask, they can't promise me anything but they also don't let you get discouraged. they use humer and radiate positivity through hard work by letting you discover what works and what is coming back. if they think you can do something they make you try if you fail they say " don't worry we can try again in a few weeks" the consultants listen to them they know there input is vital and know there importance and really know its a skill learned by experience

So in saying all that and the week Maite came,and me being stubborn I was off the parallel bars on the Zimmer frame
On the Friday being my birthday I walked 10 meters, on the Monday I walked 50 meters on the Tuesday another 50 on the Wednesday 50 again. the Thursday was 60 and on Friday 100 meters. Don't get me wrong it's not pretty and it's messy but I'm up. getting from the seat up I need help and during the walk there is a physiotherapist there in case I fall and get a head injury as well

In the pool now I can swim on my back with a hand paddle on my right hand and kicking from the hips, it's no about strength it's about movement sending them signals, 3 days out of the week I also walk in the pool parallel bars for 40 mins after the Zimmer frame so clocking up the meters, but I have to start thinking quality not quantity and the pool helps with this. One of my ideas was try to walk with a crutch in the pool holding the rail on my right and using the crutch on my left so ill do this every Friday this believe it or not is more to improve my core

originally I think the consultant made his assumption on the worst day on the parallel bars I had I think it was my second day ever and I was crap! I did not see him again down in the gym after that, but on Wednesday last his boss the head of the spinal unit taped on me on the shoulder when I was on the Zimmer doing my 50 meter sprint and gave me the thumbs up. The next day my consultant came down to see me.... Himmmmm? Maite listened to him talk with the physiotherapist and another consultant talking about other drug options in the future and it seemed like I'm still making progress. I'm going to work for the next 3 months before another drug trial it seems

I'm also in a documentary film about Guttman himself the man that founded this type of rehabilitation it's also ment to try and capture the human spirit it is a independent film directed by an English fella can't remember his name! I was interviewed for two hours and it got emotional when I was talking about family and friends and all the help and support I have been getting from home
They also followed me down around the gym for a day or so, also outside with the other Spanish patents smoking fags and drinking coffee. It's all being filmed in 3D so I'm like your man from Avatar

I have also posted a snip it of the Zimmer walk on Friday. remember this is thanks to everyone at home and hopefully there will be more improvement

Thanks ever so much for your support and kind words as always they help me greatly

"Talking about the battle in the past is easy it's fighting it that's hard"

Kind regards to all
Johnny AKA Chappie


http://m.youtube.com/watch?v=BXUQffFwCMc&feature=plcp

First one must crawl before they walk

Hi all

My mum was here last weekend and it was great to see her, we just chatted and stayed in the sun a bit, I was able to show her around the gym area so she gets an idea of the process used over here. ill post a photo, it's not a great one as we kept on saying we can do it later and we had to do a quick snap in the end

Just a quick update on my recovery. It has taken about two weeks to recover from the spinal pump and another drug they were giving me, it was tough as it felt like I was going backward but this week I feel stronger

They have told me today that I am finishing up on the loco-matt next week, this is a good thing because it means I am progressing and going to the next stage. I have been going to the pool three times a week practicing standing and moving because you need your core and hips to walk, my back has gotten stronger and I can now lift my bum up when my feet are held my heals touching my bum with knees up, this is using quads I think lower back gluts and a bit of the stomach. I can hold this for 30 seconds or so

The good news is that they have had me standing on the parallel bars with one splint on my right knee as its very week i then lean on the right splint which holds the knee and locks the leg in place, then I get the left foot in position and stand putting weight on left and right equally the left leg gets tired fast as one would guess and it buckles, but if I rest it and keep the weight on the splinted right I try again. I'm up to 20 seconds. I have been doing this all week so far or 4 days as it was a bank holiday this week here.

Today I walked the length of the parallel bar and turned and walked back, so I took my first walk!

Don't get me wrong it's not pretty and took ages to get there but I managed to do it, the physiotherapist had to help me turn as its real hard and not pretty to look at and teach me how to shift my weight, I have to help my left leg using the parallel bar because of the weakness in it. it's learning to walk in a different way.

but I'm up and my goals seem achievable. I said in the matter hospital I would be happy if I was standing some way before my birthday and happier if I could take some steps which I have achieved with the help of everyone back home it's my birthday in three weeks or so so I was cutting it fine

Now is the start for me! I'm not out of the woods and a whole lot more hurdles have been opened up to me and its daunting. And I have no doubt that I'm going to get frustrated and annoyed and upset as my worse critic is myself.

The hospital has also asked me to do an interview on camera and they have been following me around and taking video of me in the pool loco-mat and others areas, this will be for there website to advertise to English speaking country's but they will give me a copy and I will upload it when I can

Once again I would not be able to do this without the support from home and I thank you all for your support and kind words

Once again sorry if grammar and spelling is bad

Kind regards to all
Johnny

thank you to all

Hi all

I can not thank friends and family and people from Greystones and further a field enough for there donations kind words and the support given to my family and me during this nightmare in our life's . and I hope one day I'm in a position to help other family's in need as all of you have done for us!

An update on my progress is that they put in a spinal catheter in the base of my spine that is connected to a pump that gives me a higher or lower dosage of a drug called Baclofen 24 hours a day, Beclofen reduces spasticity unfortunately it has given me bad side effects, I fell sick and get strong migraine type head aches dizziness with a ringing in my ears when I sit up, Seemingly this can happen. during the procedure you loose fluid from the brain, so I have to lie flat in the bed to stop the symptoms, I have been like this for a week so far.
It also looks like the test did not work, when they give me a higher dosage it gets ride of the spasticity but i loose movement as well and if they reduce the dosage I get more movement and increased spasticity. So catch 22. spasticity is helping but it also is inhibiting me as i can not move properly with it but I can't walk without it, spasticity is hard to explain but ill try ! it feels like from my nipples down and parts of my arms that I'm being squeezed or I'm wrapped in tite as you can get bandages I can not control the movement sometimes and it looks like I'm possessed .....it's shit believe me
I've been in bed for a week so far this also sets you back as well as your not working in the gym, they can not do a real test of the pump because of my side effects of the pump. So f**k me dead I'm having a bad week!
on Monday they are hoping my symptoms will improve so I can go to the gym and do a proper test on the loco-mat too see how the legs are reacting. I can only have this pump in the spine for 10 days due to the chances of infection. But it's not all bad I have been moving better in the fitness class which consists of moving around a plinth on your bum using your legs and arms, rolling on to your belly then back, balancing sitting up using your core and placing things higher or lower withe my hands right to left, but I have not been able to try this with the pump

On the bright side, which is bitter sweet! Maite and the girls came down too see me last weekend and of course we had a great day the day flew as they could only stay a day due too cost of flights from Bilbao to Barcelona and back. they are here this weekend also because Maite's brother drove them all the way here which is a 10 hour drive. They will be here Saturday and part of Sunday, I say bitter because you really miss them when there gone and the time just goes, but I need to be here!

They are such good girls, when my head goes to bad places as it dose allot of the time, there faces take me out of that hole that you some times dig for yourself and makes you a little stronger,
As Spike Milligan once said "when the child turns into an adult. were dose the child go? I miss the child"

Once again sorry for the spelling and grammar. And from the bottom of my heart thank you all!

PS John and Jane my heart is with you !

Parallel bars

Hi all

Just a quick update on what's going on, as you can see from the pic they had me on the standing parallel bars! Before we get too excited both my knees are splinted which men's they are locked by plastic leg braise at the back so I'm working my hips and lower back not my legs the physiotherapists did not get over excited, which is a good thing as they want no splints.

So now they are having too stretch me on a plinth and bend my back, back...arcing it to get my hips in line cause they think my left leg should hold me withe the strength I have if my hips were in the right place meaning I would try and walk on the parallel bars instead of just standing but I'd be standing again first to get stronger , maybe my right leg would need a splint too walk but hay I can live with that for a while.

I also will start in the hydro pool three days a week to get hips going. For every hurdle you jump there are 10 more waiting. Spasticity, hips , core and right leg all hurdles

Thanks fore all your support and helping me jump

Also my good friends and family have set up a website for me

http://www.mediaconcepts.ie/johnnyhayden

PS sorry for grammar and spelling

PSS and yes it dose look like something is stuck up my ass

Spain

Hi all

The rehab in Dublin is finished now but I go the opportunity to go to another rehab called the Guttman rehab in Barcelona. That's where I'm righting this blog from
Everyone here is really nice and more importantly working with me instead of forcing me into a wheelchair

Ok so what's happening!

I am moving my left leg with about 95% it's very week but getting stronger and my right leg around 45% my core is coming but it's weak and my right hand is getting a little better day by day my left hand is week but I have full movement in it
My gluts or bum muscles are working they are your stand up muscles so they are important really important . The biggest problem is the spasticity this prevents muscles moving it freezes them so this is a battle! the more you move the more they should reduce so bit of a catch 22 but I'm on drugs to help with
Before I came over here I was working with Cameron Macever and Victor Megannety both have been a great inspiration and help but its hard for them to get me standing without machines as I'm a fat bastard
hens the reason I'm in Spain! already they a very positive they do not promise me but the are going to try there best, one doctor even said that with what I have now once the strength gets better I should be Abel to stand this is the most positive thing I herd from a doc in 7 months

First of they are putting me in a loco-mat this a machine that walks for me to try and retrain the legs and get the muscles working or to train the brain and legs to work together and build muscle , I will be on this a month and all going well with that they will put splints on the weak parts of my legs and hopefully will get me onto the walking frame, were I walk up and down which will be great that's walking on the ground under your own weight between bars I can go home then and work with Cameron on getting stronger

The most important thing is for me to stand once I'm up I'm up and it will be small steps from there and the spinal cord should remember what it should do

For All interested I have a link of photos and videos, think you need to download videos to see them

Thanks for all the support

https://drive.google.com/folderview?id=0B22TQ_4zTGn-STZxOFU3dXVKUmc&usp=sharing

Rehab

Hi all off to rehab in the morning 22nd, not the rehab most people thought I would be going to! but its the next step in this process.

My right hand is getting better but not as fast as I would like, and the left hand is my life line.
doing laps of the hospital in the wheal char to get my arms stronger but still could be Beaten by a little girl in an arm wrestle but rehab should help with that

That's it for know, thanks for all your support!

Picture of Johnny today Saturday 2rd November

Johnny was able to be put in the wheelchair again today for 30 Mins.
He was trying so much to wheel it on his own, its great to see him so positive and determined to do whatever he can do get moving.