Paralysed man and half deaf woman live here

My lack of writing is as a direct result of how busy I’ve been. Which is a good complaint! I haven’t even had the chance to sit down! I think originally some people thought I would be sitting around all day doing nothing, watching TV just to get through the day. Somewhat written off as a person without a purpose. Well I’m glad to say it certainly hasn’t been that way. I had a great life before my accident and I am slowly trying to build another great life. It is very different but it will still be great. The things I enjoy doing have changed, hobbies have changed. I didn’t really go to the gym, now I find myself there, more than anywhere else.

Being wheelchair dependent has many problems. Here is one. I left my house one night over Christmas. I dropped my brother out and on my return I was meant to collect my sister. She decided to stay out so I continued home on my own with my wheelchair in the boot. When I arrived home I could see that the television was on which indicated that my mother was in the front room. I beeped to let her know I was home and needed help getting out of the car which is the usual. She didn’t appear, so I beeped again. Still no sign so I called my mother’s phone. No answer. I waited patiently before beeping again. Then I rang her again. I flashed the lights, texted her, emailed her, left her a voice mail, beeped again, flashed, called her phone. This went on for nearly 40 minutes!! I even opened the front door ajar. I have had a new front door put in with an electronic opening mechanism on it that I can open remotely from my car.

Eventually on my final beep, my mother appears at the front door. I put my hands up as if to say, “Finally”. When she came out to help me she said, “What? You only beeped once!!” “Once? I’ve been here for 40 minutes!!” I exclaimed.

When I finally got inside the house I realised why she couldn’t hear me. The TV was up really loud AND the subtitles were on.

I went down to bed and my mother said, “Ring me if you need anything. I have the phone right next to me.” So I got into bed, and inevitably I needed help with something so I rang her just like she said. I could hear the phone ringing. Still no answer! So this time I shouted out to her. She came in wondering, “Why did you not ring me? I have the phone right next to me!”!!!

There’s a paralysed man and a half deaf woman living in my home.

I returned to college in September to do a masters in Medical Device Design in the National College of Art and Design. I was hoping to complete the one-year-long course over two years. I used to travel up on Thursday evenings, either by train or sometimes I drove. Friday lectures started off in the NCAD campus with two classes. After lunch with the help of my PA, I had to get myself over to Trinity College for a 3-hour lecture. Finding myself attending lectures in Trinity was a little surreal. Never in my wildest dreams would I have thought I would ever be sitting in a lecture theatre in Trinity College. But then again, an awful lot has changed. At 5 o’clock it was time to make the dash back home through the Friday evening traffic. It was a pretty hectic agenda and extremely exhausting.

The course was very interesting and the real life projects the class were involved in were fascinating. The college and staff were extremely accommodating for my needs to make life easier providing me with a PA to help take notes. Unfortunately, after a long think over Christmas I decided it was all a bit too much, so I deffered the course until September when I might be in a better position to move to Dublin if possible.

I wrote in my last blog about the importance of using the technology that is available to keep the body in good condition. After all my thrills in exoskeletons over the summer and understanding the benefits they have to offer I decided to embark on a very ambitious project. That is to get an exoskeleton in Eilte gym where I train. The exoskeleton aids people to stand and move in a walking motion.

After seeking guidance from Jane Evans from Rolling Ball we went through the different devices on the market. We decided to go for Ekso Bionics exoskeleton. We secured funds and made a deposit for exoskeleton. We now have a year to raise the funds necessary to complete the payment and keep it in Cork forever.

We had our training week in December where Ekso Bionics sent over their physiotherapist to train our physios on how to safely assess and measure users to fit in Lazarus, our Ekso skeleton.

We are now open and taking bookings for anyone who finds themselves in a wheelchair every single day. People who have suffered from a stroke, MS, paralysis can all benefit from using this device. For me it’s not about walking, it’s about getting out of my wheelchair, moving, shifting my weight, exercising while getting the benefits of walking. Feeling whole again. It can enhance blood flow, retain bone density, maintain muscles, promote better bowel and bladder function. Walking regularly will help keep your body in good condition, that goes for able-bodied people and it is even more important for the disabled.

My aided walking in Lazarus has improved greatly, getting faster, taking more steps and covering more ground. I love it. There is something about being upright, being your own height, moving, looking at people at eye level that makes you feel empowered.

I position my chair next to my bed. It’s the last transfer of the day, this could be number 10 or 12 transfers throughout the day. My body is tired from the day’s activities, all of which are done by very limited upper muscles. I shift myself off the chair and onto the side of the bed. Reaching my arm under my legs I flick them onto the bed one at a time before laying back.

To take my clothes off, I drag myself up from lying to a sitting position with the aid off a rope ladder tied to the end of the bed. I look down at my clothes. One final chore before I can put the head down. I used not be able to do this. After a number of months I was able to get the shoes off. Getting the socks off was probably the easiest, the trousers always proved to be the most laboursome. It could take 30 or even 40 minutes. That was 6 months ago. Now I can do it in less than 10 minutes sometimes 5.

Staring down at my naked legs, thighs, knees, shins, ankles, feet and toes. I try to move them but they don’t budge. I reach down and touch my calf. Rubbing up and down with the palm of my hand I close my eyes but I can’t feel the action. I sit back on to my arms holding my torso up. My legs look the same, just paler, slightly thinner as muscles are being lost, no scar that might give a reason for the lack of movement. I let out a sigh of disbelief before releasing the strain on my arms and fall back onto the pillow. Closing my eyes I drift off to sleep knowing that tomorrow I will be back in the wheelchair.

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Another Summer

Well this has been a rather busy summer.  I have been sailing, fishing, cycling, swimming, and driving.  I went down West to Baltimore, and thanks to my courageous and determined friends we managed to haul my paralysed ass up to the Beacon.  I have gone wake-boarding, had sex and I even ‘ walked’.  It seems it has been like any other summer, but it has been much different.  Of course there have been times when it has been extremely difficult, extremely frustrating, extremely sad, even depressing.  You just want to give up and stop and wish this had never happened.  I think about where I would be if this hadn’t happened, how great my life was before all this, how happy I was, and sometimes I just want it all back.  I just want to be able to get out of bed when I feel like it, without having to wait for someone to help me.  I  just want to get up and walk down the road, a road I have walked effortlessly before, and stretch my legs.  Go one day without having to ask people to do things for me.  I don’t want to have to ask for help, just do things, basic things. Open a window, tie a shoelace, fill up a bottle of water, make a dinner, pick blackberries, connect up the zip on your jumper, not have to go the long way around to use a ramp, just hurry up the steps, jump in and out of the car effortlessly, cut up a nice rare steak, the list is endless and it’s just basic things.

At the beginning of the summer I decided I had to be as fit and as strong as possible which would enable me to become more independent, improving my quality of life.  I had to find a sport that would enable me to become strong and fit in a way that I could enjoy and push myself.  I decided I would do the Crosshaven triathlon.  At first, I thought I would manage the cycle only, then as I began to learn to swim again, I thought I would be better off doing the swim only.  But as time went by and as I got stronger and stronger I realised that I could do both. Along with spending three days a week in the gym, I cycled and swam weekly. I had a lot of help, and friends were always willing to help me in and out of the water, and in and out of the bike. Doing the triathlon alongside able-bodied people felt good.  And actually beating some people in the swim was the highlight.  The cycle was slow but next year I’ll be quicker.

I applied to do a masters program in the National College of Art and Design in Dublin.  It is a one-year course in Medical Device Design.  The course director however, has allowed me to do the course over two years which will make things more manageable. For the first semester I will be in college just once a week doing theory modules. The first day was extremely daunting for me, as I was going into an environment where nobody knew me before my injury.  None of these people have ever seen me walk or even stand.  They didn’t know the person I was before, and now they’re going to get to know me as I am in a wheelchair.

In August I went to Cambridge to a physiotherapist to undergo further treatment and to see if I could bring any of these exercises home.  It is renowned for being exceptionally good with a greater understanding of spinal cord injuries and how best to get the person stronger.  As it turns out (and not that I was in any doubt) the exercises I’m doing with Colin are indeed the best way to go, and I am on the right track.  We did bring one or two exercises home but otherwise it is pretty much the same. They do, however, have advance equipment that unfortunately is not readily available in Ireland. There are two pieces of equipment, one is FES (functional electrical stimulation), which I use on a much smaller scale at home. The other is an exoskeleton, which is a robotic device which allows paralysed people to stand up and walk.  Problems of paralysis get more complicated over time because we do not stand and we do not walk.

I mentioned earlier that I “walked”.  I was lucky enough to get two opportunities  this summer where I was able to use robotic legs to put me up into a standing position and move in a walking motion.  I think all in all I took close to 35 steps. It’s not much but it was good to experiment and I have managed to form a strong opinion in favour of robotics from the experience.  The wheelchair is an ancient device which is very effective and allows us to get around.  However, I think in this day and age we can start to do better than this.  We can look to technology and robotics for another effective solution.  It may not replace the wheelchair completely but provide an alternative option. Over the next 30 years as the technology advances people should be leaving rehab with an ability to use robotics to complete certain tasks.  In the meantime, while we wait for this break-through, we need to keep our legs and bodies in the best possible shape so that we can benefit from such technology. The longer we sit and wait the less chance we will have of benefitting from any further developments.  It’s time to get people who can’t walk up and moving.  I’m not saying that robotics are going to get people actually walking again, but what it will do is enhance blood flow throughout the whole body, retain bone density, reduce muscle wastage, promote better bladder and bowel functions, and at the very least give the user a sense of enormous well-being.

This equipment is costly but we need it available to all of those who wish to use it. It will save the health service money in the long run as people will be healthier and fitter, with less complications and improve their quality of life. It will be based in the community for all to use after an initial assessment by a trained physiotherapist.  It will be affordable so anyone can use it and follow a specially designed training programme unique to each user.

Unfortunately, people who have been wheelchair bound for a long time may not benefit from such a device.  It will be more effective for recent injuries and the unfortunate ones to come.

Last week it was revealed that we are indeed on the brink of a break through for a spinal cord injury cure, let’s be ready for it.

Oh, there is one difference between this summer and others. I didn’t climb a tree!!

Independence

Coming home my strongest fear was, would I ever really be happy again? Would I ever be satisfied with how my life pans out? I don’t want to get fat in my chair. Eight months in rehab can really effect your mind. I don’t think I have changed all that much just I depend on people to do so much for me. Sitting in the wheelchair is the easiest part. The lack of independence is the hardest. This time last year I depended on only one person. Me! Just me on my own. Looking back it was fantastic!

 
“Everyone has a plan until they get punched in face.”

Mike Tyson

 

This last year I have been punched twice. Really really hard. Once in the balls!

 

I left so many things at the bottom of that tree that night. My independence being the main thing that I am missing the most.

The shot to the balls was the death of my Dad last month. It has left a hole in my heart. All I can fill it with is hope. If I don’t fill it with hope, I’ll have a hole in my heart.

 

What is the one thing that means the most to me? Independence. Independence, in its least form to me, means turning myself in bed, getting out of bed, showering, dressing, preparing breakfast and transferring in to my car, all independently. At this point I will be ready to tackle the day in which ever way I choose to live my life. In rehab we practised all of the above and I am getting better at each of them. The more I can do for myself the less reliant I’ll be on others, which will make me happier.

 

What will make these easier to achieve? Well I have identified the two main areas which need to be improved. It’s quite simple and obvious. I need to become physically stronger and my hands need to improve big time. I have been working on both with my highly motivating and enthusiastic trainer. Since I have returned from Guttmann I have been continuing to exercise with Colin working up to three days a week in the gym. We have been strengthening my upper body and we have even accessed muscle groups further down my trunk. Progress is steady but slow, but there have been some noticeable improvements. I box with Colin once a week which is great for balance and fitness. The first time I boxed I struggled to reach 100 punches. Last week I smashed 1000 punches.

 

We have been working on my wrists and again they have increased in range, mobility and strength. The next step is to regain motor function in my hands. I have a NeuroRehabilitation Specialist coming down from Dublin with an electrical stimulation device. To my knowledge she has not worked on someone with a spinal cord injury. Typically the device is used on stroke patients and brain injuries. Hopefully this piece of equipment will enhance my hands ability to function, thus regaining the desired independence that I long for. There is also another piece of equipment that I have been actively seeking since my return from Guttmann which will exercise my hands. This is just another case of me wanting to try absolutely everything that is available. Most of my improvements will happen in the first two years and I need to make them count. I’m one year down today.

 

Colin also works on goal settings with me which has cleared up a lot of confusion as to where I want my life to go and what are the most important aspects of my life that need to be worked on the most. Identify it: Independence. Now, how do we get there? What are the necessary steps involved to achieve that goal? Write it out so you can consult it so as not to lose your way. This exercise was extremely important to me as it made me realise what I really want and need. We have mapped out a way in which to achieve the goals set.

 

So this brings me to a sport which will allow me to get stronger so I can reach independence quicker. When I came back from Guttmann it was clear that a lot of work had been done by my friends to get me back on the water pretty much straight away. I was introduced to the two Paralympic sailing coaches who saw potential in getting me to Rio for the Paralympics in 2016. The qualifying events were identified and plans were put in place to get me to these events. I realised that this was a highly ambitious task. I continued to train with friends with this ambition in the back of my mind. I recently went to a wheel chair rugby training session where I realised that the sport I choose to work at will improve my strength. I’m not sure do I really like to play wheel chair rugby, or murder ball as it used to be called, I don’t think it is for me. Unfortunately with sailing and the position I will be in it does not offer the cardiovascular activity I need to strengthen myself. I need my heart to work hard.

 

At the moment I have so many things going on in my life. It has been an absolute tragic year. This weekend marks my first year with a disability. It has been extremely difficult for my whole family and with the death of my father last month my mind just isn’t in the right state to take on such an ambitious project. We as a family need to work together to rebuild our lives. Mom, Aisling and Darren need my support as much as I need theirs. Aisling and Darren have completely up rooted their lives to improve mine. The quicker I can achieve a fairly independent life the easier they will find it to concentrate on their own. We all need to be happy with the direction of our lives. At the moment neither of them have been fortunate to secure full-time jobs which is worrying for them even though they don’t show it.

 

After all that has happened in recent weeks with Dad dying it has become a case of too much too soon. My main focus is my family and my independence. But I still need to find a sport. I think I have found one that I will be able to focus on which doesn’t require too much assistance. It will build up my strength.

 

I do wish to continue with sailing but without so much commitment. It is something I wish to return to when the time is right for me.

 

I also wish to get back to work and earn my own money. I have always had my own job, I have been working in some sort of a job since I was 13. I read an interesting fact recently from a spinal cord injury Ireland booklet which stated that 70% of people who suffer from a spinal cord injury do not return to work. I hope I won’t fall into this statistic. I have been looking at furthering my education and adjusting my capabilities to suit my disability as manoeuvring inside a ship and it’s engine room as a crew member cannot happen.

 

At the NKT fundraising ball in my speech I said, “with the family and friends I have anything is possible”. It was true from the moment I hit the ground beneath the tree, and it is certainly true now with no sign of fading. Thanks to everyone who attended and the organisers who did a fantastic job to make it a special night no for me.

 

In my dreams I am still walking.

Guttmann Gone………….

Sorry guys I know it has been over three months since my last blog!

Flying out to Barcelona I had visions of what was to come. I didn’t expect miracles or some greater power to fix me. I just thought if I worked hard, I mean very hard, everyday that something great might happen, the hard work would pay off and I would regain some sort of movement which would result in some independence. The lack of independence is probably the hardest part of the injury. I mean I would get over being confined to a wheel chair if I could still do all the everyday tasks without relying on someone to help me. If I just pushed myself every single day, surely it would pay off. I had to go, try something with more intensity. I wasn’t ready to go home. I didn’t feel like I had reached a condition that I was satisfied with.

It was tough. I had spent pretty much every night since June is a hospital. That is no place for a 24 year old, no place for anyone. Guttmann was physically demanding, the schedule required stamina and dedication, and once I got into a  routine it was just about keeping mentally sound. Mentally it challenged me the most. Up at 8.30, breakfast, motomed, lokomat, swim, electrical stimulation, OT, transfers/dressing practice/bed mobility, finish at 17.00, rest. Five and a half days a week for three months. The routine still plays over in my mind. It wasn’t necessarily that strict, I just made it that way. I was able to be there purely because of the generosity of thousands of people and the hard work that they had put in to raise funds so I could get out to Barcelona. I had to make it count. I had to give it all I had. I realised early on that this amount of intensity could not be maintained for a long period. It really was a once in a life time opportunity.

I found myself at a point where I was holding back tears as each bolt of electrical current tried to trigger a specific movement. It wasn’t necessarily painful, it was triggering a movement that I hadn’t done for so long. Although it was only a slight flick of the wrist, for me it was like moving a mountain. I was concentrating so hard, sending a signal down to do one movement, a movement that is so simple, right wrist, pause, left wrist, pause, and on like that, and I am wondering, why won’t you move? Then the shock fires and my wrist raises. Mentally I was shuck. Since then I have strengthened that movement, it is still not 100% but it will get there.

When I swam I threw my arms back over my head, the body wanted to stop. But I didn’t. For one hour each day I kept throwing those arms over, thrusting the water back. I kept my chin back and out of the water looking straight up at the ceiling. I just kept throwing those arms back, just keep pushing, don’t think about anything else. It’s simple, just keep swimming, just keep swimming, swimming swimming swimming. I got to a point where I could swim without any floats or assistance.

On the lokomat it was about getting up out of the chair, having the legs do what they are supposed to do, sending signal to the legs and watching them pace. This was exhausting. Trying to tell my legs to take each step. That level of concentration was probably the most difficult. To see yourself walking brings up a variety of feelings. Yes I am walking, but no I actually am not.

When I became so fed up, to the point where I was going to stop and give up, throw in the towel, and I’m wondering why am I doing this, why am I here, I used to take myself back to the ICU in the Matter Hospital and try to remember the condition I was in then and where I am now. If I can take that progress and throw it forward it creates a better vision and then I don’t stop.

It was difficult being so far away from home, friends and family. Darren stayed with me for most of it, Aisling, Mom and Dad came when they could. Otherwise Aisling was working on getting everything set up for me at home, while Mom focused on my Dad’s cancer treatment and being with him. Although I did have a lot of visitors the lack of Irish humour each day was greatly missed. I think that over the 12 weeks I was there, only two weekends went by where someone didn’t fly out to visit me. Those visits obviously lifted my spirits as it created a distraction from the strenuous routine. We exchanged stories.

A young guy in the ward next to me, had a horrific accident where he lost both his feet. One day he came into my ward in his wheelchair. With his extremely limited English, “Nathan, Nathan, hola Nathan”.
“Well, what can I do?”
“Tablet, tablet”, he said pointing at the ipad. “Por favor”
“No problem”, and I pushed the ipad over to him. He took it eagerly and started tapping away. I left him at it. But after a few minutes was I curious as to what he was doing. So I looked over at the screen. He was on the Nike online shop looking at the latest air max shoes. This made me smile. A few weeks later I was in the gym, “Nathan, Nathan.”
I looked up and there he was pointing at his feet. His prosthetic legs were inside a cool pair of Nike Air Max. He gave me the thumbs up, smiled and walked off.

Another guy from Morocco, just 19, he had a higher injury than mine, used to sit opposite from me at OT. Unfortunately he seemed to be quite sad most of the time. He could just about move one arm slightly with no strength. He lacked motivation and when he was given exercises to do he would try once, maybe twice and then give up. He would just stare into space with no interest. I tried to interact with him but with our lack of a common language it was difficult. Every time a half good looking girl passed we would usually just say “chica guapa?” We would then either agree or disagree. He loved that! But he rarely moved his arm or took part in the exercise. One day as I sat next him he was staring into space so took up my weaker left arm and punched him in his arm. Well he didn’t like that all! I brought my body closer to him and encouraged him to punch me back. With all his might he picked up his arm and swung for me. He missed but he didn’t give up trying to hit me until his limp weak hand bounced off my left arm. He had no interest in pushing blocks across the table, he just wanted to punch something. Soon after I started squirting alcohol gel at him. He wasn’t long figuring out a way of getting me back. Then as my hand function got better I used to throw things at him. He would block missiles with his arm and even attempt to throw them back. We had made up our own OT exercises and in fairness the therapists found it entertaining.

Guttmann was great for me. It gave me the freedom to design my own programme (under their guidance) and to do the activities that were good for me, and most importantly good for my head. It provided a high level of intensity that brought me to place of satisfaction. I have been given this injury and I have done my very best to get as far as I could to give me the best start after rehab. Don’t get me wrong NRH was fantastic the quality of the actual physio was higher but it just didn’t give me enough active time during the day to justify being there 24/7.

VIDEOS: locomat swimming

Ski Trip

I wrote this after my ski trip to La Molina in Spain and somehow forgot to post it correctly. Better late than never I suppose.

We had an early start last Thursday morning. The bus was to begin loading 14 patients, and 15 or so family members and helpers aboard at 7 am. A massive 52-seater bus glided into the Guttmann Institute car park. But it was no ordinary bus. It was fully wheelchair-adapted. The mid-section completely opens up and a lift slides out from the hold below. A wide open space is left free inside where wheelchairs can be secured for the journey. One by one we were carried up in to the bus on the lift. Once we were all secured in position the bus left the gates and we were on a trip that would open so many opportunities for everyone on board.

La Molina was the destination. La Molina is the oldest ski resorts in Spain and it is one of the few fully adapted resorts in Europe which accommodates disabled skiing. It offers different types of adaptive skis which cater for all different types of disabilities, they can be positioned on all chair lifts with assistance, and experienced instructors are at hand to teach you the techniques involved and keep you safe while learning.

I had been skiing and snowboarding for many years before my injury. Last April I went to Mayrhofen in Austria to a ski/music festival called Snowbombing with some friends. Seven days of non stop skiing and parties. It was incredible! I think skiing was an activity that I knew I was going to miss and when I found out that a trip to the Alps was being organised I jumped at the opportunity to give it a go at least.

When we arrived at La Molina I was lucky enough to go first. I was placed into my ski-car and some adjustments were made. Some of the basic turning and stopping manoeuvres were explained and then we were away up the moving carpet. Once we got to the top the instructor reined up to my ski-car so as to make the experience safe, probably a bit too safe for my liking, but I suppose it was reassuring to know he was there. We slid down the slope taking mostly uncontrolled turns before reaching the bottom! We continued on this twice more improving and gaining more control and confidence before venturing further into the expansive mountain range where more fun was had. The lesson lasted two hours, we covered more ground than I thought we would.

It was great to get back out on the snow, be back in an outdoor environment that I had grown to love, and see all the breathtaking views that the Pyrenees have to offer. I guess when you suffer a serious injury and the basic everyday tasks become a challenge, you begin to think that extreme activities like skiing are unmanageable. But it is definitely manageable with the right support.

It was really good for me to get out of the gym and hospital and take on a more enjoyable activity. I even found that I used muscles further down my body that I didn’t realise I had access to. This has since helped to support my body and improve my balance a little.

Throughout the lesson my instructor David told me about his involvement with disabled patients and getting them skiing. He explained to me that although I now have limitations, most sports can be adapted to facilitate my needs. It is possible, and I believe him.

February 2nd 2014

They sit in their chairs every morning, looking down a challenging channel, lined with wooden railings. It is not particularly long, maybe an unnoticeable three large steps to everyone else. It is a pretty self explanatory task. Stand up, walk to the end, stop, turn around, walk back, turn around and sit down. Do this as many times as you can. Some patients manage to stand up for seconds only, before flopping back to their chair. Others manage quite well stepping over and around obstacles.

Two days ago I saw a lady fall as she tired to complete this task. She was there the day before and was doing well. Other patients saw her go into an unsteady wobble before she fell towards the railing, failed to grasp it and her arm and cheek hit the floor helplessly. As the cry of pain came from the lady a look of helplessness came over all those who witnessed it. Some were only inches away but because standing is a difficulty, they were left unable to reach out and support the falling lady. There was a moment of silence between the cry stopping and the scurry of physios going to attend. The lady was lifted up, put on a stretcher and taken away. Each of the other patients returned to there chairs during the ordeal, and a look of dismay and distress came over their faces.

Then next day there was a lady with her arm in a sling and her face bandage with a dressing sitting at the entrance to channel. Slowly she stood up, shuffled to the end, turned around, shuffled back and turned around again. This time she did not sit down, she continued on to repeat the exercise several times. I see remarkable resilience and determination like this every day. It drives me on.

I’m delighted to say I will return to Cork on Friday to attend what promises to be a beautiful event. I am really looking forward to seeing everyone, and being back on home ground. It has been so long.

My stay will only be brief as I will return to Guttmann on Sunday for my final weeks of rehab!

Christmas reflection

Every muscle in my body is aching which is strange because I can’t feel most of them! Six gruelling months of therapy and recovery has finally come to an end. I am taking 10 days off to rest over Christmas. I’ll spend this time in Marbella with my family returning to Guttmann on the first of January. I am really looking forward to just relaxing and being out of a hospital environment.

This last week has been particularly exhausting both mentally and physically for many reasons. Firstly, being the last week of 24 weeks before Christmas, it’s always going to be a struggle to keep it together for the last few days. Secondly, I was unhappy with some aspects of care and attention I was receiving from the various departments throughout the hospital adding unnecessary stress to the situation. Thankfully all matters have been resolved and dealt with accordingly. This brings me back to the lads in the NRH whose experience in dealing with spinal cord injured patients must be acknowledged. Experience can’t be learnt from a book or bought, it purely comes down to time spent with patients. They have seen how the treatment has changed over the years and they have acquired the skills necessary to treat patients.

And finally, my work load here has been increased with the introduction of the lokomat. For those of you who don’t know what the lokomat is, put simply it is a treadmill with robotic attachments that move your legs through a walking motion. Typically the lokomat is not recommend for patients with high complete injurys such as myself. But I have said this before, I don’t care which term they are using to best describe my injury, complete, incomplete, C4, C6, T9, S4, AISA A, AISA D, whatever, right now it’s not important to me. I’m not expecting any miracles and maybe I am being ignorant to the harsh reality of a spinal cord injury but when you have been reduced to near nothing physically, you don’t have anything to loose. I want to be given the opportunity to try everything that is available to me. Then I’ll decided what term best describes my injury, once I have exhausted all possible options of course.

Anyways back to the lokomat. I have been assigned one hour each day between 10 and 11. This will continue for 6 to 8 weeks. On Friday I “walked” 860 meters! I’m not getting carried away with this because the movement is completely passive and I understand that and I know what that means. Every step I take I am trying to take that step myself. My brain is trying to tell my legs to take the step. My brain still has the ability to send these signals, my legs can move I see them move everyday unvolinteerily by spasms. The brain and legs have just lost their ability to work together. The link between the brain and legs is gone. It’s a wiring problem! Why can’t I be rewired?!

Now although this exercise maybe considered “pointless” to most with experience in this field, my legs are feeling strong, feeling used, not just dead weights hanging off me that get in the way. They feel like they are part of my body again! I have been speaking to a guy here in a similar situation as me and he has been on the lokomat for several weeks now. He tells me that although the movement is passive the muscle mass on his legs has increasd. I expect the same to happen when I return in the new year. How is this exercise pointless?

I am not sure why I am putting so much effort into my legs when not being able to walk is the least of my worries. My hands and fingers are my main concern at the moment. They have little or no motor ability. It makes everything so much more difficult and makes me so much more dependent. I don’t even know where to begin with the basic things that are such a struggle. Dressing, showering, eating, writing, turning pages in a book, opening bottle caps…. All basic every day things that have become difficulties with lack of hand function!

A typical day in Guttmann Institute Monday to Friday
08.30 get up, wash, have breakfast.
09.30 motomed, a bike which powers your legs in a circular motion, preparation for the lokomat.
10.00 rigged up to the lokomat, hopefully no dizziness, “walk” for up to 50 minutes.
11.00 swimming and hydro therapy.
12.15 stretching, balance work, electrical stimulation.
13.30 lunch and a nap.
15.00 occupational therapy.
16.00 transfers and dressing practice.
17.00 finished!

Saturday
11.00 motomed.
12.00 slings.
13.00 finished!

Sunday
Exhausted!

Thanks to everyone who have supported our Christmas song. “All the lights” was written by a family friend from Wexford, Alan Byrne. Alan approached me in September with this great idea and he wanted my family and I to be part of it. We were only too delighted to be involved. So I had to find a suitable venue and time to do the recording. When you are going through rehab in the NRH you and your family are assigned a weekend in Villa Maria, a house on the hospital grounds, before your discharge date. It gives your family a chance to understand the daily tasks involved in taking care of someone with a spinal cord injury. If you run into any difficulties the hospital staff are not too far to come over to assist you. It is a fantastic facility. I knew this was going to be tough on my family as they were going to experience just how dependent I have become. I needed this weekend to be fun and be remembered for a better reason. So the week before I sent out emails asking all involved in the song to arrange to do the recording in Villa Maria. It was short notice but sure enough everyone managed to be there! We had great fun learning the words and singing the song, adding a bit of early Christmas cheer to that sunny mid October weekend! Thanks Alan, you made that weekend a lot more enjoyable.

So it is time for a break. For those of you taking part in the swim on Christmas Eve in Currabinny I hope it is suitably cold!! Happy Christmas to everyone on the NKT committee. All your hard work is keeping this recovery alive and I really do appreciate everything that you are doing. Also to everyone who has been involved, organised, donated, or simply showed up to the fund raising events, showing your support in numbers, Happy Christmas to you as well! And I would like wish everybody a healthy, Happy New Year full of fun, happiness and smiles! 🙂

On the lokomat

Looking Back to go forward

For me this is not just about a family devastated by a life-changing lifelong spinal cord injury, but about family, friends, neighbours and even strangers, organising events that pull people together, and most importantly, events that are fun! As I look through the photos of events I see lots of familiar faces and even more faces I don’t recognise at all! All smiles!

I am thousands of miles away from Ireland now and the only reason I have been able to get here is through the generosity of you, the people who show up and take part. I feel I am very lucky to be here in The Guttmann Institute in Barcelona. It has taken the funds you donated to get me out here and for that I am extremely grateful. I can reassure you that it will be money well spent! Every day I see people in much worse condition than me. I count myself lucky that my injury was not any higher in my neck and that my brain was not damaged in the fall. I don’t necessarily want to be here, it’s certainly not a place I would want anybody else to be, and I could think of a thousand other places I’d rather be. But for me, right now it’s where I have to be. It’s the place where I can achieve my goals. I must continue this recovery and achieve as much movement as I can. It will make things much easier in the future.

“I hated ever minute of training. But I said, Don’t quit. Suffer now, and live the rest of your life as a champion.”
Muhammad Ali 

Am I enjoying it? Hardly, but I am making the most of it! I have good days and bad days just like everyone else in all walks of life. The bad ones make you appreciate the good ones, and even drive you to work harder and pull you out of a slump. I have met some fantastic people on this journey. Some have inspired me, some I watched and learned so much from, some who cared for me and some who made me laugh. I have seen new sides to old friends. I have made new friends, people I’m glad I met, but I certainly would never have met them had this not happened. It is when you meet amazing people, spend time with them and get to know them, that it makes this experience unusually worthwhile! I have learned that it doesn’t matter where you are in life as long as you are surrounded by the right people things will work out.

I must thank all the great people working in the National Rehabilitation Hospital in Dublin for all the work they did with me, getting me to where I am today. The physiotherapists and the occupational therapists who put in hours and hours of therapy to help me regain and maximise any movement I could. The doctors and nurses who cared for me and spoke reassuringly to my family. But most of all, the lads and ladies in the blue shirts, the ward assistants, the ones who muck out the stables every morning, they feed you when you can’t feed yourself, they cloth you, they wash you, they talk to you, they listen, they are the ones that bring the life back to spinal cord injured patients. They make the jokes, they take the piss out of you, they make you laugh and they help you to see the light! It is impossible for me to thank everyone, but these people I could not speak more highly of, and I know anyone who has been through the NRH would agree with when I say they are the light in the NRH! 

I know there will come a time when I will have to stop, look back at what I have achieved and be satisfied. But for now I must continue, aim for the stars and maybe I might hit Mars!

Onwards and upwards my friends!

Happy Halloween Everyone

thanks to Eddie for his design and everyone else who helped to put this very elaborate wheelchair friendly Halloween costume

Back blowing bubbles

Well I certainly spoke to soon!. The day after I wrote about having no set-backs my leg, the one I broke, started to swell up. There was no bruise or redness, just firmness around the area where I had broken my femur. It was 4 inches more in circumference than my right thigh. The doctor came to review the situation and asked me to “lift my leg” which annoyed me a little, but anyway it was considered that I may have had a blood clot. An injection was given to thin the blood. The following morning I was brought to Loughlinstown to undergo an extensive ultra sound to review the situation. The ultrasound did not detect a clot which was a relief. On returning to the NRH the doctor met me to explain the next step. It was now feared that the bone on the femur was continuing to grow outwards from the broken area. An x ray would reveal a case of what is called heterotopic ossification where calcium deposits on the joints and muscle tissue and can solidify forming new bone. If the calcium solidifies in my hips it would prevent the joint from functioning and would need to be surgically removed. Like many aspects of spinal cord injury, they do not know what the exact cause of this is, but I’m hoping they caught it early enough to prescribe the right medication so it does not become a serious issue.

In the last few weeks I have been getting out as much as possible. I have enjoyed a trip to the zoo where I decided my favourite animal is the penguin, not monkeys as I once thought! The day went incident free until the bus journey back to my rehab home! I was braked in securely in the wheel chair bay provided on the bus, the 46a to be precise. Everything was fine until the bus came to a sudden grinding hault. The chair lurched forward with the wheels sliding across the floor, and I was thrown forward in the chair! I landed on top of an elderly man who was sitting opposite me, with my head buried in his chest! As I was quite tired after my busy day and my upper body balance is not very good at the moment I remained stuck to the poor man’s chest and could not pull myself back in the chair. He was quite shocked and puzzled as to what to do! Fortunately Aine came to my aid and pulled me back off the unfortunate man! Apologising, I was repositioned back to my original spot. He reassured me it was fine and he wasn’t hurt, but he still looked a bit shocked! I can’t blame him really it’s not every day a disabled man in a wheelchair launches upon you. He jumped off at the next stop!

Last week I was lucky enough to get a chance to go scuba diving in the hospital pool. I was assisted into the pool as I am every week before my hydro therapy sessions. This time was different though, I was rediscovering the underwater world with limited mobility. The scuba unit was secured to my back as I hung onto the side rail. The regulator was placed in my mouth and with the mask tight around my face, I was ready to descend into the pool. I took my first breath and immediately I felt the same comfort I always had while under the water. Although, I had forgotten about the underwater silence. All I could hear were my deep breaths and then the long exhales as the bubble bounced away from my cheeks escaping to the surface. I was at peace again!