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!

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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

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!

Neckloose

Well since I got the neck brace, life has got progressively busier. The down side to that is less time for blog updates. I have been working hard with my physio practicing sitting up in bed. Sounds pretty simple but it’s a tricky one due to lose of strength in my shoulders and the range necessary in my arms to prop myself up. Once this is mastered I will be starting transfers to and from the chair and bed. This will make me more independent as at the moment I am relying on a hoist and two people to assist.

I have just been looking through some of the photos of the past week on the NKT Facebook page. I sure am glad there are so many people enjoying themselves, at my expense!! On Friday as I pushed through Dun Laoghaire with Ais and Dar we passed a haggered man with a beaten coffee cup sitting out on the path. I thought to myself, I might not be able walk, but at least I am not alone. The 100 or so people who turned up for the mini marathon have reinforced that belief. I know that this journey of recovery won’t be a lonely one!

So while ye were out enjoying the weekends events, I too was enjoying my weekend. I had the pleasure of my aunt and uncle’s company while Ais and Dar returned to do the mini marathon! The highlight being the roof -top view of the Flight Festival. We could almost tickle the bellies of the planes as they flew overhead! In our company were the employees of a company that lease airplanes. So as you could imagine they were able to tell us everything about each plane that passed over us. Planes from as far back as World War Two were on display. It was interesting to see how the aviation industry has developed over the past 100 years in one event.

There is a kitchen here that is used by the occupational therapy department to enable wheel-chair users to practise cooking. The height of the cooker, sink and table can be adjusted so the chair can fit in underneath allowing you to work and reach around safely. Last week it was my turn to use the facility. I was told I could cook anything I wanted. I decided on a rasher toasty with fried eggs! Mmmmmmmm! It took about two hours to make! Everything just becomes so difficult. Getting bread out of the bag, putting the bread in the toaster, getting them out, buttering them. Finding a way into the packet of rashers, opening the George Forman, and grilling the rashers. Surprisingly enough cracking and frying the eggs was probably the easiest part of the cooking experience. Unfortunately by the time I actually assembled my sandwich all the components had become cold, which was a bit of a let down after all the hard work. I was so tired by the time I had finally eaten my sandwich, and I was now faced with cleaning up the kitchen. I slept well that night!

I was measured for my wheel chair two weeks ago. The specifications were sent off to Poland (I think) it usually takes at least six weeks to hand build and I will not be able to leave the rehab until it arrives. This means I will be here longer, which is good, more rehab and more physio.

Dad had a scan earlier this month and we got fantastic news. He does not have to got back on chemo as the cancer has reduced significantly. As you could imagine this is a huge relief to have Dad back to good health.

So since I have had the neck brace off I have had no set backs. It really has been onwards and upwards. The support I have been receiving has been a driving force to make me work harder and push myself harder, as I can see so many people are also putting in so much work to raise funds. Thanks to absolutely everyone who has done anything in assisting the NK Trust.

Two types of progress

My discharge date has been asigned, I will be leaving the NRH around the first week of October. If I am not happy with my progress, a few weeks can be added after a meeting with the consultant. Basically, the condition I roll out of here in October will be the finished product from the NRH. Just over three months of physiotherapy, occupational therapy, sports and social activities, they feel I will progress no further. So where does that leave me?

I am very lucky to have the family, neighbours and friends that I have. Without them I don’t think I would have even got this far. With them I have the ability to progress in my recovery. Hours and hours have been endured by my family to establish the next port of call. My brother’s girl-friend, Jenny must have researched every spinal recovery facility in the world, from China to California. With further research and phone calls to patients who have undergone treatment in the various facilities, we have managed to narrow it down to just two spinal centres, either in Thailand or Barcelona. Both facilities have huge costs. This is where my friends and neighbours have swooped in to take over. They set up the trust fund to ensure that all the costs are covered which is a huge worry off our minds.

On Saturday a sports day took place here at the NRH. I watched the table tennis, basketball and shot put, to name a few. I was enlightened by just how able all these disabled people were. Some have adapted to each sport using different techniques and were managing very well. All these people have accepted their injury and were embracing what they can do. For me, I feel like I have been forced into a new world, a world that gets little or no attention from the able-bodied society. These people were happy and enjoying the sport they were engaged in. Laughing even. But it wasn’t just fun, there was a streak of competitiveness. It was clear that a lot of training and adapting had taken place in preparation for the day. But above all, there was an enormous sense of encouragement and well-being.

I am afraid to accept it. If I accept it maybe I will remain here forever! I have accepted that I will be in a chair for a long time before I reach my number one goal. That goal has not changed!
I liked my old life, I had just finished college, I was young and free, employed and I was very optimistic about my future. I was excited! And over-night it has all changed!

Also yesterday I spoke with the Antrim Rose, a beautiful girl from Carrigaline. I used to play basketball with her brother. Anyway, she is a wheel-chair user for nearly ten years now. She spoke about her road trip from Belfast down to Kerry and the success and fun she had with her boy friend, who is also a wheel chair user! That’s in contrast to two out of the four outings I’ve had where I tried to use the toilet and on both occasions the door didn’t close behind me as the toilet wasn’t big enough, once in the cinema and once in a restaurant. In fact the toilet in the restaurant was on a lower level to where I was eating. The stairs lift to carry me down was out of order! I had to go out the front door, down the road, take a left and continue down to the delivery entrance where I could gain access to the toilet. When I got there I didn’t even fit! I think I’m turning into an angry wheel-chair person!! Wheel-chair rage!!!

On a less frustrated and confused note I have progressed with regards adapting to wheel chair life. I have down-sized in wheel chair. I got rid of the throne which was nearly impossible to manoeuvre. Now I have a smaller chair which is more compact and way easier for me to push. I’m going wheeling slowly but it is great to not have to rely on someone to push me every where I want to go.

For me there are two types progress. One is about regaining movement and recovering. The other is about adapting and learning new skills to optimise the movement I do have to make wheel chair life easier. It’s obvious to see which type of progress I want to improve in more, but for the moment I still need to accept and learn the other new skills.

Also the movement that I do have is getting stronger and I have started dressing and learning Spanish on an app my sister downloaded for me, so things are improving!

And just now this evening I was given the go ahead to remove the neck brace that has been stabilising my neck for eleven and half weeks now. So far it is a relief to get it off and my neck has healed well. We shall see how the next few days go with regards strength and range.

An insight into spinal cord injury

Well I certainly didn’t expect all of that! The support from everyone is incomprehensible. I was only expecting a few of my friends to read this blog, and that would be it. I’m a little nervous now with the extra attention and a much bigger-than-expected audience! But I want to thank everyone who has offered their support in all of the various ways and sent such nice messages. I believe with all of this support I can succeed, however long it takes.

My Family

Well, finally my family has been reunited with me here in Dublin. A major amount of family member reshuffling was required to make sure we all arrived here safely. My sister, after finishing her term teaching in London, went out to my Dad in Switzerland allowing my Mum to come back and be with me. This in turn allowed my brother to return to Vienna to pack up his things. After some good blood test results, my father was given time off chemotherapy allowing himself and my sister to return on the 1st of August, followed by my brother on the 5th. It was really great to see my Dad, his presence adds great solidarity to the family. He is looking so well considering what he’s been through.

A Day Out

The day following the return of my dad and sister I had my first day excursion out of hospital in two months. It was quite the learning curve for all of us! It started with a taxi waiting for us outside the hospital with a ramp in place waiting to push me up. As I approached the top of the ramp, it became clear that I was too tall in the chair to fit in to the taxi. The taxi driver, it seems, realised this also at the exact same time and asked me to “just tilt your head to the side”. He had been requested to collect a spinal injury patient who was wearing a neck brace, clearly having a broken neck, from the rehabilitation hospital and he wanted me to tilt my head……. baffling. Obviously that wasn’t going to work. After some humming and hawing he decided to recline the chair further back whilst pushing me up the ramp so as to lower my head. I was strapped in and on we drove.

I could feel the thud of each pothole shoot into my neck. When we arrived at Avoca restaurant in Monkstown the next test for the taxi driver was to find enough space on the busy street to pull in with ample room for the ramp. I was the slowly backed down the ramp, which is very frightening as you feel like the chair is out of control. I breathed a huge sigh of relief as we hit the footpath. The chair was put back in its upright position but my neck was now in a lot of pain. As my sister pushed me I began to painfully realise that the paths are about as rough the roads for a fella on wheels.

As I entered the restaurant (the first public place outside of hospital I had been in 2 months) the first thing I noticed was the change in the way people behaved towards me now that I’m in a wheelchair. The sympathetic smile, the awkward smile or the quick glance away to avoid eye contact; I was definitely guilty of all these before. It is hard to get used to this type of attention. Having said that people were very helpful with accommodating me – opening doors and clearing spaces. But these are things that I never needed help with before which was hard to deal with.

We thought we had it all planned out with regards to the equipment I needed to feed myself and drain myself. However, when we got to the table and realised how low down it was compared to my chair, I thought this would be a disaster and was worried if I would be able to feed myself at all. Whilst looking at the menu, I had to be very particular as to what I chose so it would be easy to eat with just a fork. Considering the last time my sister saw me I couldn’t even lift my arms, she was worried that I would be flinging food all over the place into people’s faces! I put on the necessary equipment and mounted the fork to my wrist. I had to lean forward and reach down lower to the table than what I’m used to. When the food arrived it was chopped up nice and small by my sister. I started digging through the tasty duck and slowly but surely I got through it without making too much of a mess.

The Injury

When I had seen people in wheelchairs before I would have thought “that’s awful that they can’t walk.” I think that might be what most people think, when unfortunately, there is a lot more to this type of injury than meets the eye.

For example, I do not have the ability to control my bowels or my bladder. I am on a strict bowel movement plan whereby I have to soil, with assistance, at roughly 5 o’clock every second morning. This, a good diet and exercise is very important to prevent future bowel complications.

At the moment I have a tube inserted into my bladder via the penis and this is constantly draining into a bag as necessary. When I am out of the bed and going around in the chair there is a bag strapped to my leg. When this becomes full it needs to be drained. If the bag should remain full the urine backs up into the bladder and kidneys and can cause infections.

After a spinal cord injury the regulation of blood pressure, heart rate and how blood moves to the heart is disturbed. The sensory and temperature regulation does not function normally below the level of injury and the body cannot generate heat by shivering or cool itself by perspiring, which means I have to be very careful about the temperature in every environment.

Everyday I must do breathing exercises using breathing apparatus to make my diaphragm stronger and increase my lung capacity. My cough muscles are also very weak at the moment. Here, they show me various techniques of clearing my throat but they are also quite weak. Last Tuesday whilst in the company of some friends and family, I was having my evening meal. I was talking and laughing and eating brown bread. I became a complacent chewer and swallowed a chunk of crust. Immediately I started to choke. I pushed the table in front of me away and my brother realised I was choking and called for the nurse. She ran in and started pumping on my stomach. While she tried her best, the little Philippine lady hadn’t the strength to release the bread. In the meantime my brother ran out to fetch further help while my friend Aengus and his Dad, Finbar, stepped in to perform the Heimlich manoeuvre. After a number of attempts, I thought I would lose some ribs. The two strong fellas managed to dislodge the bread just as further help arrived and I could breathe again. This could have been a very frightening experience had it happened in another location. Because I was in the rehab hospital with many capable carers and assistants I was not too worried. The ever-helpful assistants then showed my brother and sister what to do should it happen again.

I felt it was necessary to inform those reading this blog what I have learned about spinal cord injury in the last two months. Although my ultimate goal to walk again remains, the act of walking is actually a symbol for a recovery that involves much much more. Everyday is a new lesson for me and another small step towards a full recovery.

A psychiatrist came into talk to me about the events over the past two months and he came to asking me what kind of outcome I expect from this injury. I told him, I expect to walk. He then went on to ask me had I thought about what would happen if I did not manage to walk again. Once again I told him that I will walk. I asked him – at what point do you think I will know that I’m never going to walk again? And he couldn’t answer me. I answered it for him; the day I give up.

From then ’til now (recap)

On the 3rd of June 2013, under the mischievous influence of Captain Morgan, I found myself disobeying the 3-point-of-contact rule whilst, apparently, thirty feet high up a tree. Down I went, tumbling into a new life-changing challenge.

First my wrist, then my leg, then my neck……… CRACK.

Immediately, fresh off the back of a three-day first aid course, I knew this was serious. Kyle, heroically, called the ambulance……. “male, 24, fell from a height, possible spinal injury, owenabue estate, carrigaline”.

Within five minutes the ambulance came screaming up the road, followed by another. Just as I had been used as a dummy spinal injury patient some days before, I was shimmied carefully onto a spinal stretcher and carried away with the ambulance crew. When we got to Cork University Hospital the seriousness of the injuries were unveiled. My wrist was treated on arrival, while X-rays were being performed on my neck and leg. There was a lot of commotion and to-ing ANDY fro-ing before it was decided that the injury was so serious it would need to be dealt with in the Mater Hospital Dublin.

I was hoping to be airlifted, but instead had to be wagoned up for two and a half hours in another ambulance.

Upon my arrival at the Mater, I was prepared for surgery. While waiting to go in I recognised the silly blue casted hand that could only belong to the broken thumb of John Downey. The doctor proceeded to tell me that after the surgery my condition would most likely be irreversible. Rather than entertain such morbid thoughts I preferred to focus on the jovial company of John. We chatted the whole way down to the operating theatre. I was then sedated and went into the land of Peter Pan and Mickey Mouse.

I woke up over 12 hours later in the Intensive Care Unit to my Mum and my brother with a tube wrenched down my throat, which was, fortunately, removed not long after. I spent five nights there and was looked after very well, particularly by the lovely Susan. As my breathing and mobility became stronger I was transferred to the High Dependancy Unit and then eventually to the National Spinal Injuries ward in the Mater. I met the consultant of the National Rehabilitation Hospital who informed me that I would be transferred there as soon as a bed became available. She also diagnosed me with a C4 spinal cord injury and told me I would not walk again. But, I don’t believe her. I will walk again.

A bed became available at NRH after just two weeks into my stay however due to severe neck pain it was decided I was not ready to start rehab.

During this time my Dad was meant to fly back from Switzerland for what would have been my graduation. When my mother went to Dublin airport to collect him there was no sign of him. After a lot of panic and countless helpless phone calls we managed to get in contact with the airport medical staff who confirmed that an Irish man had had a cardiac arrest in the airport and he was rushed to HUG, Hospital Universitee de Geneve. We called the hospital immediately where they confirmed that Gerard Kirwan had been admitted and was currently in a medically induced coma. My Mother, my brother, his girlfriend, my sister, her boyfriend, my cousin, my auntie and uncle all fled to Geneva. Fearing the worst I was left in the Mater hospital to await news.

I was thankfully distracted from all this commotion and uncertainty by many friends, family and neighbours who arrived to visit.

The next day my Dad was brought slowly out of the coma. Over the next few days it was clear that he had made an amazing recovery. Although I knew I would still not see him for another few weeks or even months.

My neck pain had subsided by 3rd of July and I got word I would be transferred to the National Rehabilitation Hospital in Dun Laoighre that very day. Since then I have settled in well to my hospital ward in rehab hospital. While I still have quite substantial neck pain, I have had regular physiotherapy to work on my upper body strength and I am getting stronger and more independent. Whilst making quite a mess, I can now feed myself, shove water in my face and attend to those irritable itches that have tormented for weeks now. My next goal is to pick my nose, which will go down as one of my greater achievements in life. As my progress and abilities continue to improve in the upcoming weeks and months I will post on this blog to keep anyone who is interested updated.