Dubliner Noel, who worked in the ESB for many years, was 54 when he had his first stroke in 2000. Noel and his wife Bernie tell their story.
Noel: After I retired from the ESB, I worked as a painter/decorator. I worked for myself at the time, but on the day I had my stroke there were a few others working on the site with me. We were working in town, near Parnell square. I was up a mobile scaffolding painting the ceiling. I got off the scaffolding to fit some door handles. I had to change a bit in the drill but I couldn’t open the chuck and I was using a lot of pressure to turn the key. Then I just blew a gasket! Now I know that I had a bleed to the brain because an aneurism burst.
I had had a headache that morning all the way up the back of my head so I wasn’t feeling right. The electrician working with me came over to me and asked, “Are you ok?” and the painter said, “You don’t look right, you’re very pale”. The electrician then realised that it was serious; he could see one side of my face dropping, so he phoned an ambulance straight away. The ambulance was very quick and got there within minutes. They put me on a trolley, but I just kept saying, 'I’ll be alright, I’ll be alright'. But the ambulance men knew immediately and put me on oxygen.
Bernie: I got a call at 12.35pm to say he was very ill. First they asked to speak to my son, but he was out so they told me to take a seat. They said he was very ill and not conscious. It was terrible. My daughter came up and collected me; she nearly crashed the car driving like mad to get there!
Noel: I was sent to the Mater hospital, I didn’t know anybody or remember anything, and I don’t remember any of my family being there. It was bizarre I felt like I was having an out of body experience. I was up in the air looking at myself and my family around me and I said to myself, “What are they all doing there?” so I came back to investigate. I could feel myself coming into my body. It was like being in a pool of water.
Bernie: They had to transfer him from the Mater to Beaumont to have a CT scan. The ambulance to transfer him didn’t come until 7pm that evening! Transferring him made him very sick and he was physically sick in the ambulance.
Noel: I was diagnosed as having a bleed in Beaumont and sent back to the Mater where I stayed for 4 months. I was then transferred to the National Rehabilitation Hospital in Dun Laoighaire for three months. So I was seven months away from home in total. They think it must be a family thing because I never smoked, I never took a sick day in my life. I was a hard worker, fit as a fiddle and I only liked a few pints of Guinness!
Bernie: When he was diagnosed they called in the family and told us that he only had six weeks to live because of the damage.
Noel: But they caught me in the early stages and treated me quickly. After the three months in the National Rehabilitation Hospital I had made a great recovery. I was determined to get rid of the wheelchair and I did! I used to go for walks and I could walk around unaided. I had made a great recovery and then I went back for a check up and I was put on a higher dosage.
I had my first seizure in the downstairs bathroom at home one morning. I went weak in the toilet and my family couldn’t get in.
Bernie: I was sitting reading the paper and I went to the bathroom door and I could hear heavy breathing. Myself and my son tried to open the door but couldn’t do it. I had to call the fire brigade who broke in the door and brought him off to hospital. The seizures were causing more damage to him every time they happened.
Noel: Then I had another stroke in 2002. It knocked me back to where I was after the first stroke.
Bernie: We thought he was gone this time, he didn’t know who anyone was for about 6 weeks.
Noel: I was sweating in the hospital from my nerves; my daughter even had to bring in an extra fan. It’s an experience I will never forget.
Bernie: After all that he still has a great sense of humour.
Noel: You have to think positively. You have to work at it. My family were a great help and they encouraged me to keeping going. The way I see it is that I used to be able to do things and now I’m learning how to do those things again but I mightn't do it 100% perfect. I won’t give in and Bernie gets annoyed because I won’t let her do anything.
Bernie: I don’t like to see him struggle.
Noel: The simplest things are the hardest things to do now, like buttoning a shirt.
Bernie: Noel was a man who could do anything that he put his hand to.
Noel: I did everything, I was the jack of all trades. We never needed a handyman in my house, I fixed the washing machine, the electrics. You name it, I could fix it!
I still get physiotherapy once a week and I have a power plate at home to help build up my muscles but there’s nothing as good as professional help. I find it difficult to go out walking now because the paths have too many cracks. People do help you if you fall but they don’t know what’s wrong and they sometimes think that I’m drunk. They might grab my bad arm and I let out a roar!
My speech used to be very slurred but it has improved a lot. I also have only peripheral vision in one eye. I’m like a book - you need to read the whole story to know what’s wrong!
The doctors in the rehabilitation hospital said they had never seen an arm as bad as mine. I have tried everything to release the tension including alternative medicines like acupuncture and I got Botox injections to release it. It didn’t help but now I have the best looking arm in Dublin! The next step is tendon release but this is not 100%. My doctor is worried about me going under anaesthetic and I would need a lot of intense physiotherapy afterwards. Now my fingers are getting infected from the pressure and the sweat and I need to try and unclench my fist. I have to clean and wash it regularly. But you know, you just can’t let it get you down.
One thing that I found appalling was the lack of information for stroke patients, for instance another patient had to tell me about the stroke club that’s just down the road from me.
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