Team Edward's Parish Walk 2019

Our very own web administrator, Edward Kelly, will be entering the 2019 Parish Walk  held on the 22nd June and he will be raising money for the Manx Stroke Foundation.

Over to Edward:

So that's me in the picture with the pink Team Edward bib on! As you can probably tell, I'm not the average Parish Walk competitor as I'll be assisted by a four wheel walker called Roy (Roy Walker, he he).

My name is Edward Kelly and in October 2002, just days after my 21st birthday, I had a severe stroke that I've never fully recovered from (more details below). I’m entering the 2019 Parish Walk on the 22nd June and I will be raising money for the Manx Stroke Foundation.

On the day of the Parish, I am going to give it my all and see how far I can get from the NSC track start line, and, as an added bonus, the Parish Committee are also allowing me to cross the finish line on Douglas Promenade later in the evening.

As well as raising money for the Manx Stroke Foundation, I want to inspire people to be more active and hopefully prove that you can become a stronger person by overcoming a seemingly hopeless situation.

Below is a short story that I wrote in 2004 giving details of my stroke and the time spent in hospital. I’m not saying I had the toughest time ever, as I know there are people that have been through much worse situations than me, but I hope it gives you a glimpse of where I've come from to be able to take part in the Parish Walk.

If you would like to sponsor me, you can do so by clicking here

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Edward’s Story

"I had a 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 on and off for a few months, and one day I felt especially unwell and dizzy at work which resulted in me vomiting.

After being taken home, I made it up the stairs and into bed as I thought I'd sleep it off. I'm not sure how long passed while I was in bed, I was experiencing a feeling of pins and needles or numbness in my left side, and I felt my voice disappearing (I remember sounding like Yoda at one point!).

A couple of hours later (or so it seemed) my mum came to my house to see if I was ok and found me stiff as a board. After trying to give me mouth to mouth (yuk!), she called an ambulance. The ambulance crew had trouble getting me out of the room though because I was so stiff and motionless. It was like I'd been hypnotised for that trick where you are suspended between two chairs and then the board is removed from beneath you.

The trip to Nobles Hospital flew by (time seemed to speed up, like a video on fast forward) 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. I could only use my eyes to blink yes or no, so communication at this point was slow and not easy.

A lot of what happened to me over the next two days spent in Nobles Hospital is a bit blurred. I must have been on morphine-based drugs as I had some strange dreams or visions, and I'm glad I lost my voice as I am sure I would have said some unusual things (I thought I had a pig’s leg transplanted onto my body at one point!).

Eventually they decided that a transfer to Walton Hospital in Liverpool was needed, but there were gale force winds and floods at the time so I was unable to be transferred in the air ambulance until the second day. In Liverpool I was rushed to the Intensive Care Unit and given sedation so they could scan my brain without me coughing or shaking too much (it was only at this point it was confirmed on the scans that I’d had a stroke).

When I became fully aware of my surroundings, I realised I had bad double vision and my head was permanently turned to the left side. I was very weak at this stage and could only move one finger and my head a little at first. While I was unconscious they had operated and performed a tracheostomy (a breathing tube inserted into the throat, by-passing my mouth and nose). My lung had also collapsed and as a bonus I had developed pneumonia!

At first all the breathing was done for me by a machine, but over time I was slowly weaned onto doing it for myself. I would do an hour or so to start off with, and then longer spells later on. I still wasn't able to communicate with my voice, but eventually an alphabet chart helped a lot, although I was too weak to point at the letters so we set up a system of blinking that worked.

I made a lot of new friends with the staff on the Intensive Care Unit, mainly because I was about the only patient 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 even if it was only slightly funny or not funny at all (I’d rather this condition than the opposite!).

After about a week the decision to put in a ‘peg tube’ (direct feed to the stomach) was taken and I was put under again. This was more permanent than passing food down a tube in my nose going to the back of my throat into my stomach.

A few weeks passed and I was ready to move to the High Dependency ward. I was only there one day and my breathing rapidly deteriorated. They had to move me quickly back to Intensive Care and basically start again with regards to my breathing.

Things went well and after a while they decide I was ready to go to a ‘normal’ ward. It wasn't long though before they decided to move me back to Intensive Care as my lung had collapsed again. Intensive Care didn't mind having me back though, even if it was for the wrong reason!

I was eventually well enough to be put on a ‘normal’ ward again and stay there this time! In total I’d spent six weeks in intensive care.

I stayed on a ward for a month, not being able to talk to anyone or move out of my bed. I was so weak that I couldn't even press the nurse call alarm. Eventually they made a special alarm for me that was very sensitive to my touch.

By Christmas the doctors thought I was well enough to be taken off the oxygen supply and they removed the tracheostomy tube in my throat and I could again use my nose to breathe. My sense of smell came back when this happened which I'd not realised I’d lost!

I was still fed by the peg tube on the ward and I was not allowed to eat Christmas dinner, but only two days later I was allowed to eat food by mouth (I remember I was pretty annoyed at the timing as I love Christmas dinner!). I could only have what they called a soft diet though and ate things like cauliflower cheese and similar soft food. I wouldn’t have normally eaten something like this, but it had been virtually two months since I'd tasted food, so I didn't really mind!

The doctors thought I was ready to transfer to the rehab unit and I was transferred by ambulance on the afternoon of New Year's Eve 2002 (picture). It was quite exciting as it was the first time I'd been outside hospital since I was admitted in October of that year!

In the rehab unit I had to learn how to speak again, first by saying a few one syllable words then longer words and eventually sentences (something you pick up as a toddler without thinking about it). I was only using a small amount of the capacity of my lungs because of the stroke and I had to practice a lot to strengthen the muscles around that area (such as blowing up balloons). In the end I did away with the alphabet chart altogether which made it a lot easier to socialise with the other patients.

As the weeks passed I also came along pretty well in physio. From nothing at all in my left leg, I was able to take a few steps, eventually walking short distances with two people to hold me at first, then only one person holding me, gradually going further. When I was more confident I used to get my mum or dad to walk me up and down the corridor each night for practice.

They also concentrated on everyday things like getting washed and dressed on your own. 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 had also gained enough control in my right arm now to shave myself without cutting my nose off!

When my standing balance was good enough they got me playing pool on the table in the unit. I had to use a special rest (a bit like a knuckleduster) to play as my left hand wasn't well enough to use. I got quite good after a few matches and eventually played every day.

The time eventually came for me to go back to a Noble’s Hospital. After six months in the rehab unit and two months in the neurological hospital I had made quite an impression and I got a good send off. I also achieved one of my goals and walked out of the rehab unit!

My mum and I travelled by car to Heysham where we got the boat back to the Isle of Man and we made our way to the refurbished rehab block at Noble’s Hospital. This unit was known as Newlands and was different to the rehab unit in Walton as this catered for all ages (Walton was up to 50). When I arrived I could see it was mainly older patients and I would be the youngest there by a long way!

Back on the Isle of Man I was able to go home every evening for a few hours and most of the day at weekends, which made things more like normal. I think I progressed well, as I was walking around using a crutch, at first with supervision, eventually with no supervision at all.

I did make friends on the ward, as older people don't deserve the flack they get. The men do snore, and don't have particularly good aim when it come to the toilet, but I met a few interesting people, including a fire-eater called Salamander!

As well as receiving therapies five days a week, I was also getting back into a normal routine in preparation to go home e.g.

I was a member of the Breakfast Club. The first rule of Breakfast Club is....only messing. 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 suffering your illness.

In total I spent two months in Newlands and at the end of September 2003 I was allowed to go home full time.

At first, my mum thought I would be confined to my bed, with locked in syndrome, only able to blink yes or no like when I was first admitted.

Thankfully I proved her wrong!"

Written by Edward Kelly 2004

If you would like to sponsor me, you can do so by clicking here

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