Edward Kelly

I had a severe brainstem stroke in October 2002, three days after my 21st birthday. I'd been getting headaches in the back of my head and dizzy spells for a few months, but my GP thought it was a virus causing the symptoms.

One day I felt unwell at work and I ended up vomiting in the toilet. This resulted in me getting the day off sick. I am lucky to work with my brother and he had to take me home as I could hardly walk let alone ride my scooter. I made it home and up the stairs, then into bed (I thought I'd sleep it off). I'm not sure how long passed and my body did some strange things. I was experiencing a feeling of pins and needles in my left side and I felt my voice disappearing. My mum eventually came into my room to see if I was ok and I was as stiff as a board. She called an ambulance after panicking for a minute or so and it came pretty soon after (or so it seemed). They had trouble getting me out of the room because I was so stiff and motionless. It was like I'd been hypnotized to get placed between two chairs and sat on!

I knew one of the ambulance drivers, David, he was talking to me most of the way, but I couldn't say how I was or anything. I haven't seen him since, but I think I owe him a drink or two.

The trip to the hospital flew by (time seemed to be sped up) and I was soon in Intensive Care. I was asked lots of questions, like had I taken ecstasy etc, but their first conclusion wasn't that I'd had a stroke. A lot of what happened to me over the next two days I spent in that hospital was a bit blurred. I think I must have been on morphine based drugs as I had some strange thoughts or visions and I'm glad I lost my voice as I would have said some strange things.

Eventually they decided that the case was too much to handle there and a transfer to Liverpool Walton was needed. This was on day one of two, but it was October 2002 and if you remember, there were gale force winds and floods. I was not able to be transferred until the second day. The transfer was on an aeroplane and I do remember most of that. When I arrived in Liverpool I was loaded onto an ambulance to the hospital, which was some distance away. I kind of remember being admitted to the Dott ward, but I was given a sedation to scan my brain without me shaking and messing it up.

Again most of what happened next I missed because I was unconscious, but I remember waking up with a massive headache on ICU (Intensive Care Unit) I'm not sure if it was the anaesthetic or the fact I'd had the massive stroke.

Eventually I became fully aware of my surroundings, but I had bad double vision and my head was permanently turned to the left side. While I was unconscious they had operated and put a trachea in as my lung had collapsed, which they had drained. I obviously wasn't able to communicate with my voice, but eventually an alphabet chart helped a lot. It also had some actions on it like "turn on the T.V", but it also has stuff like "take out my teeth". Not really catering for someone of my age. Using the T.V option I always had time to watch the Simpsons.

ICU was a very noisy place with the life support machines bleeping all the time. It was like being in an episode of The Osbournes. I made a lot of new friends on ICU, mainly because I was about the only person conscious and the fact I was very cheery. This was a condition I developed after having the stroke and I would laugh excessively at something if it was only slightly funny or not funny at all.

After about a week the decision to put a peg tube in (direct feed to the stomach) was taken and I was put under again. This was more permanent than the tube down my nose.

Eventually after a few weeks I was ready to move to a lower risk ward. I was moved to the High Dependency ward. I was only there one day and my breathing deteriorated and they had to move me back to ICU and basically start again with regards to my breathing. Things went well and after a while they decided I was ready to go to a ward. I was moved to the Dott ward for the second time round and I spent a bit longer there this time.

It wasn't long though before they decided to move me back as my lung had totally collapsed again. ICU didn't mind having me back even though it was for the wrong reason. In total I spent about five weeks on intensive care, being shifted round places. I was now well enough to travel back to the Dott ward and this time stay there. I stayed there for a month, not being able to talk to anyone or move out of my bed. I was so weak on both sides I couldn't even press the nurse call alarm. They made a special one for me that was easily pressable.

By this time I celebrated Christmas with my Dad. After getting plonked in Liverpool when I was transferred, my parents stayed in the on site hotel for a couple of nights and had to leave there as a conference was being held there. They eventually found accommodation in a B & B down the road. They took turns of coming over to visit because my Dad has to work most of the time, but my Mum doesn't have a job.

I was still fed by the peg tube and I was not allowed to eat Christmas dinner. Only two days later I was told I was allowed to eat food, but I could only have a soft diet though. I don't normally eat a lot of veg, but it didn't seem like veg when it was mashed up and it had been virtually two months since I'd tasted food, so I didn't mind them.

The doctors thought I was ready to transfer to the rehab unit, the only thing was I had to be off the trachea and oxygen supply. They did eventually remove the trachea and I was transferred on New Year's eve 2002. Probably the soberest new years I've had for a few years!

The rehab unit wasn't what I was expecting, but the good thing was I had my own area of a four-bedded room. It was a bit strange at first and I couldn't talk still, so it was even harder to make friends. At the unit I received three therapies, physio, speech and occupational.

My speech eventually came back slowly, but I think my parents would prefer it not to have because I could be cheeky again. This made it easier to socialize with other patients. As my speech came back I was weaned off liquidised food and onto solid food. I remember my first solid food, toast!

I also came along pretty quick in physio as well. From nothing at all in my left leg, I was able to walk again. Only short distances and with two people to hold me at first, then only one person and longer distances. When I was more confident I used to get my mum or dad to walk up and down the corridor each night as practice. I did notice the difference in physio. Eventually I was ready for a stick. I tried a walking stick, but it didn't offer enough support, so an elbow crutch was used instead. At first I was not very confident at using it and I had to be watched everywhere I went. That was the point the rehab had got me to when I left.

Not forgetting OT, they concentrated on every day things like getting washed and dressing yourself. At first I needed almost everything doing for me, but they got me putting on my own t-shirt, then eventually all my clothes myself. I also had enough control in my hand now to shave myself without cutting my nose off. When my standing balance was good enough they got me to play pool on the table in the unit. I had to use a special rest to play, as my left hand wasn't good enough to use. I got quite good after a few matches and I eventually played every day.

After I could speak well enough, I made a lot of friends, not only with the staff, but other patients as well. On the unit there were different injuries, strokes, car crashes and MS patients mainly. The maximum age of patients was fifty-five. I wasn't the youngest though, there was a lad who was nineteen, but he had a car crash and for a short time, there was a girl of sixteen.

The time eventually came for me to go to a hospital nearer my home. After six months I had made quite an impression and I got a good send off. My mum and I traveled in a car to Heysham where we got the boat to the Isle of Man. Yes, the Isle of Man.

When we arrived, we made my way to the refurbished rehab block. This unit was different to the rehab unit in Walton as this catered for any age range. When I arrived I could see it was mainly older stroke patients and I would be the youngest patient there. I asked and the next youngest patient was forty-two. Twice my age!

I was at first put into a separate room as I had been transferred from a different hospital and they had to check for MRSA. I was told I was all clear and I moved onto a communal ward with five other people. They were my grandfather's age and napped from two till four. I just watched Quincy in the TV room while this went on although I was allowed home each day and every weekend. This made things more like normal again and wasn't easily done in Liverpool.

I think I progressed well, as I was walking around using the crutch, but only with supervision. Eventually it was with no supervision at all, the independence wasn't something new, as I'd had an electric wheelchair to get round in Liverpool rehab.

I did make friends on the ward, as older people don't deserve the slack they get. The men do snore and don't have particularly good aim when it comes to the toilet, but I met a few interesting people. The nurses did become my friends as well as some of the patients and I still see them from time to time.

For OT, I was a morning member of the breakfast club. It wasn't an exclusive club for people who liked breakfast, but it helps you back into your normal routine at home. You had the choice of a few cereals and toast or you could bring your own selection of food. I brought bacon some days and sausages the other. It's not as a load of people said, "learning how to make breakfast", but it's how to get used to doing it yourself at home after your illness. Not all patients had this because not all could walk or stand.

At the end of September I was allowed to go home full time, but I virtually lived at home already because I went home every day. All in all I spent about two months in that unit. Ten months of my life was spent in hospitals and it gave me time to think about things. Life in the rest of the world doesn't stop when you're not there. People and things change while you're away. Buildings are built and people do new things. Also, people you thought were good friends aren't as close as you thought they were. A selection of friends visited me in various hospital, but people that I'd call a good friend didn't come to visit me while I was a patient or even now that I'm home. I suppose some people are scared of hospital and the tubes that came out of me at first, but I'm basically back to "normal" now.

Now I'm home, I have to cope with using just my right arm to do almost everything with. My left arm is used a little bit, but only to steady stuff really. The fingers are almost permanently clenched and the arm has tone, which leaves it in the sling position. As I said before, I am walking around myself with an elbow crutch, but only in my house, not outside and over long distances, although I've been assessed for a car with the Mobility scheme.

My work place has been good to me and kept my position open for me. I now work five days a week, from one till five and I am working towards full time again. I only needed a days retraining, well if you can call it that. They have also raised a lot of money on my behalf and the parent company has doubled that figure each time. They have done other things for me including buying a special chair with a hand brake on so that when I sit down or stand my chair doesn't end up the other side of the room!

I attend physio now at the unit I was in, but most of my physio is up to me at home. The other thing I benefit from is a scheme at work that pays for an amount each year towards a private physio. We were a bit undecided at first if to take advantage of this money, but I wish I had used it sooner as it is a certain amount up to the 31st December, then the same amount after. I only started using it shortly before New Year 2003/2004 and used just about half of the money allocated for that year.

The private physio seemed, I wouldn't say better, but different. She saw potential in me and had a different approach. The physio at the hospital, she said, works more with older patients and is going for function rather than normality (managing to live with the dominant side mostly taking over). She instead broke a normal walk down and tried to get me to practice the separate parts of walking. Anyone does it without thinking, but I need to think about it to get it right. I have been going to private physio ever since and my walking has improved a load. You probably couldn't tell if you just glanced at me at, but if you knew what you were looking for you could see it was better. My walking is slower now as I have to do a lot, but it is better. If all private physios are like mine, I'd recommend it to anyone in a similar situation.

Leaving the hospital now I have free time in the mornings. They are mostly spent in bed at the moment, as I have nothing to get up for. I did attend a club for the physically disabled, but this didn't really cater for my interests. I didn't used to make Christmas decorations and cards before I had the stroke so why should it interest me now. Having strokes at such an early age isn't really catered for over here.

That's about where I'm up to the best part of a year and a half after my stroke. The doctors can't find a reason why I had it and I certainly hope it doesn't happen again. I didn't meet anyone in Liverpool or in the IOM who had such a severe stroke and survived. I did meet a couple of people, who had brain stem strokes, but they were not quite as bad or they didn't need as long to recover in hospital as me. A doctor away said "Because I had youth on my side, that was the reason why I survived". Most people do not survive brain stem strokes and I think I'm one of the lucky ones.

Thanks to Edward for sending in his profile. Anyone else who would like to share their story can send it along with a photograph (if you're not shy!)

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