Lars O'Reilly

Originally from Dublin, 40 year old Lars was living and running his own business in Wexford when he had a stroke aged 35.

I was 35 when I had a stroke. I was self-employed, running an internet cafe in Wexford town. We had 12 computers, running on three servers, so it was a big operation. We were one of the first cafes in the country to offer internet gaming tournaments, where teams of four sitting in our cafe would be playing games over the internet against people on their computers in the US, in Dublin or up the road. We were one of the first to get into this ‘iGaming’ and it was really popular. This was before consoles like Xbox live and the Play Station allowed people to play online.

All my life I have had a condition called lymphodema, which causes the build-up of fluid in my arms and legs. They get very swollen at times. As a result I also get cellulitis – a skin irritation. For most people cellulitis is a mild skin irration, but for me because of the lymphodema it has a massive impact. Normally, it's treated by an IV course of antibiotics. When the infection starts it can spread rapidly. I can become really sick within half an hour.

It was while I was in hospital for cellulitis that a major stroke happened to me. I was asleep on the corridor of one of the regional hospitals receiving medication through an IV drip when I woke up to find that I couldn't move and my speech was completely slurred.

I didn’t think I was having a stroke. I was sure that I was having a reaction to the medication, because I'm allergic to penicillin. I was able to tell someone on the corridor to get the nurse in casualty to come and stop the antibiotic drip. At first the medical team thought that I was having a bad reaction to the medication so they gave me anti-toxin medication but by then I had blacked out.

I was taken for a CT scan, and it was confirmed that I was having a stroke. I don’t know how long the interval was between the onset of symptoms and the scan. It doesn't matter anyway as thrombolysis wasn't available. Certainly there was no mention of it.

The doctors at the hospital tried to do various blood and ultrasound tests to monitor my progress, but it was a pointless attempt. I went downhill – fast. I developed pneumonia and septicemia within hours. I was brought to Beaumont Hospital in Dublin. On the way there I slipped into a coma. My kidneys began to fail and my liver was following.

I was put into intensive care where I was in a coma for three days. Apparently my partner, Tanya, was phoned three times during these days and told that the following hour was critical. I nearly didn't make it.  I only know about this time because Tanya kept a diary every day. I read it much later when I was starting to recover.

I was moved to the high intensity unit and was given a tracheotomy [a surgical procedure on the neck to open and airway through an incision in the windpipe] because I couldn’t breathe on my own.

For the first three weeks I was in Beaumont I was on morphine a lot so I wasn’t very aware of my surroundings so Tanya was making any decisions that needed to be made.

There were a multitude of thoughts going through my head at this point. I remember thinking that the indignity of this at thirty five years of age was frightening. I was so dependent. I wasn't able to speak, I couldn't eat, I wasn't able to control my bowels and I had a catheter fitted, I couldn't swallow, I could barely move. I was looking at a future that included care around the clock and it shocked (scared) me.

I was angry. Not at anyone in particular, but the situation I was in. I also remember being very, very upset, lonely, vulnerable, and frightened. Even though my partner was there, as was my mother, I felt very alone. On more than one occasion I got upset to the point of tears. Understandable, you'd think, but this was more than just feeling sorry for myself – I was terrified, shaken to my core. Even now, the feeling comes over me of wishing the stroke had been more complete.

When I was well enough to sit (with support) I was put into one of those 'tilt in space' wheelchairs so I could be wheeled around. This was yet another indignity that I had to suffer. I wasn't able to support myself upright and flopped over on one side, slipped down in the chair, and got very sore sitting upright.
I was sure that I was facing a life of institutional care. I was being taught how to use a wheelchair and to transfer from one place to another. I found this really hard. Mostly because I had no strength in my arms so I couldn't use them to move myself.
I was in Beaumont for four months in all and then I got a place in the National Rehabilitation Hospital (NRH) in Dun Laoghaire. I was driven by ambulance to Dun Laoghaire. I remember thinking the rehabilitation hospital looked very dilapidated. To be truthful it looked depressing. The ambulance driver had said to me that people who go into the NRH feel shocked at first, but then really come to admire the place. I was sure I was going to hate it.
I can recall that the physiotherapist had asked me what my goals were and I remember saying that I wasn't bothered about not being able to walk again but that I wanted to be as independent as possible. The physio worked very hard on me. It is a very intensive regime. From 9am to 4 pm you are doing all different types of therapy – physio, speech and language, occupational therapy and hydro therapy [in the hospital’s pool], relaxation therapy and gym work, as well as sessions with a neuropsychologist.

I had been freed of the tracheotomy tube and the PEG tube in my stomach and was encouraged to eat a fairly normal diet. But my food was still pureed. As the nourishment took its course I began to fill out. By this point I had lost over nine stone – nearly half my body weight. But I was getting it back.

My mind had been very traumatised by the stroke. I was finding it hard to concentrate. I wasn't able to focus my mind long enough on a book to be able to read. Conversations were disappearing from my memory. Events, appointments, meetings with therapists or doctors weren't gelling in my mind. I had to keep note of everything I had to do, and people and places I had to see and be. People often say 'I have a head like a sieve'. Well it's more than that. I had no recollection at all. Even if someone prompted me I still couldn't remember, and it was getting worse.

It was intense but I really liked my time in the NRH. The people are fantastic. You meet with people who are there for different reasons – amputees, stroke survivors, brain injury patients and people who have had car accidents. All of us were broken people who needed rehabilitation.

Having a stroke was pretty devastating. The stroke just took everything – my business, my car, my income, my health, my independence. All I had was me and I didn’t feel that was much use.

When I left the rehab hospital I was happy to be home in Wexford but I wasn’t by any means fully recovered. When I was discharged from the NRH all the therapies stopped. I had a brief stint in St. Johns in Enniscorthy, which is a depressing place, but after that, nothing. I haven't had any physiotherapy since. I have had some Speech & Language therapy, but this was provided in the geriatric unit of Wexford General Hospital. I have been informed that because I’m not over 65 or under 5, they have nowhere to 'treat' me. I'm too young, but at the same time too old, to get the services and supports I might need.

I was still under the care of the neurologist in Beaumont for 3 years and I went there every 6 months or so for a visit but that just focused on my neurological condition and wasn't concerned with rehab. I've been discharged from that service now.

Really, I felt that once I left the rehab hospital I was just left to my own devices.  
Since I have come home I have found the internet to be one of the best resources for me. I am so housebound now that I find it a useful tool for me to find out information and to reach out to other people. Despite the fact that I used to run internet gaming tournaments, I am not a big gamer myself, so I mainly use the internet to talk to people on forums.

Before I had left Dun Laoghaire I had picked up information about organisations offering support, such as Headway, BRÍ and the Irish Wheelchair Association (IWA). I signed up to become a member of Headway and the IWA in Wexford.

But I don’t have the opportunity to meet with other stroke and brain injury survivors. I think that stroke, in particular, makes people feel very alone. It isolates people.

There are so many things that I can’t do now. I used to love gardening but now I can’t dig a hole. I haven’t got the balance or the strength. I would need to rely on someone else to do it. And the expense of raising all the beds in my garden means that I can’t do that either.

I’ve tried work experience but I discovered that my threshold for work is three or four half days, otherwise I am exhausted. It is hard to find work anyway because I can’t do anything physical. A lot of the work around Wexford is based around farming and trades. There isn’t a big technology workforce here in which I could use my skills.

Last year, I did a year long course in office administration. It is a course that is targeted at people with disabilities. I found it a great experience to be getting out of the house, socialising with people and having something to do every day.

When I think about the support I have received since my stroke I would have to say that initially the services are great. But when you leave rehab, depending on where you live you have a greater or a lesser possibility of recovery. You are let go and that is basically it. You have to fend for yourself.

What really gets to me is that there is no service for Tanya, even though my stroke has had a major impact on her. It must have been a massive shock for her. I’m probably a different person since my stroke but she hasn’t received any counselling and there is no support group for her. I’d like if she had somewhere she could go to talk about the fact that her partner had a stroke.