My story

A Stroke of Luck.

by Peter

In 2005 I was Managing Director running my own company from Gateshead

My stroke

On the night of 7/8 July I suffered a severe stroke. In the morning I was found at the foot of the stairs at home; I was very confused, unable to speak normally or to understand anything that was being said to me. I was taken by ambulance to the Stroke Ward at North Tyneside General Hospital, a ward I now visit almost every week to talk to patients and their families.

The stroke had damaged the left side of my brain and had thus affected the right side of my face, my right arm and leg. My eyesight was severely impaired. Initially I had tunnel vision, but I soon regained peripheral vision on the left side. Even today, I have no peripheral vision on the right side of each eye, a medical condition I now know as hemianopia. I still have understanding difficulties, aphasia and memory isues although my problem-solving ability has improved.

Serendipity

Disabilities are not all negative. For instance I have two more that actually make my life easier and safer. I have photophobia, which is not an actual phobia, in spite of the official name, but a strong aversion to light. I have to wear dark glasses, so when walking I can see the reflection of the sky in both water and ice, which means I can avoid them.

The second is hyperacusis. I find loud noise extremely painful. When a police car passes with siren blaring I have to put my hands over my ears. One advantage is that my hearing is much more acute generally which means I can hear approaching traffic and thus cross roads more safely.

My memory problems also have a beneficial effect on my leisure. I can buy a DVD and watch it "for the first time" several times thus reducing the cost per view.

Early recovery

Back to the story. After two weeks I was discharged into the care of my sister Margaret, who lived on a farm in Cumbria with her husband and their two sons. It was as though that family suddenly had an extra child to look after, albeit a rather old,simple and difficult one! My brother in law had to fit a stair gate to stop me falling down the stairs. As soon as I was able, Margaret and my other sister Kath insisted that I take short walks, initially with their support, up and down the farm lane several times a day. Looking back I now know that this was a turning point and it taught me the importance of regular exercise within ones capability.

The next stage

The next stage was to go on accompanied day trips back home to North Shields. I say home but I did not recognise the place they kept taking me to. I was sure I lived somewhere else, in a much bigger and grander house! These trips soon extended to weekend visits. A couple of months after my stroke I was able to go home full time on my own. My sister Kath, whose strengths are business admin and IT, had the hugely difficult and fraught task of closing down my business. That took about 2 years.

Early strategies

I had to overcome many day-to-day difficulties and my friends were particularly supportive at this time. One day I went for a long walk, because I was feeling adventurous, and I got lost. I had been taught to make “failsafes”, so I had arranged that the last number redial on my mobile would ring a friend. I rang my friend to come and pick me up, which he said he would, if I could tell him where I was. I had no idea so I asked a passer-by, pretending I was not local. This was to save face because I didn’t want to explain yet again that I was a stroke survivor lost in his own neighbourhood.

Someone else helped me get over my “phone phobia.” I had thrown my house phone system in the bin and I would never switch on my mobile because I had a completely irrational fear that when the phone rang it was bad news. I overcame this by arranging with my friend Nancy to make and receive calls only at prearranged times. After several weeks I was no longer frightened of the phone.

Reading problems

For a long time I was also terrified of receiving letters because I could not read them and so had no idea what they were about. After being told I had to stop putting them in the bin to solve the problem, a system was worked out where I faxed all correspondence to Kath, who would tell me what was important and how to deal with it.

Living With Stroke

One day I received a letter, probably not the first, from Northumbria NHS Foundation Trust inviting me to attend a day-conference called Living With Stroke. I was eventually persuaded to go but before I agreed I had to be absolutely sure that I would be brought back home to safety. Although I did not realise it at the time, just attending this event changed me fundamentally. From this day I started to act independently and gradually gained enough confidence to enable me to get about and do things on my own. Most things still terrified me but I was determined to take up the challenge.

At the event I was introduced to several people who were to help me in various ways to change my life; David from Stroke North, Julie- Anne from Leisure Choices, Jill from Age Concern and Pam from the Trust.

Stroke Club

David introduced me to Stroke North, a stroke club of which I am still a member. For a long time I didn't say a word at the meetings but gradually I realised we were all in the same predicament and it gave me the confidence to get involved and speak out, so much so that several years on the members now say I never shut up.

Age Concern

Originally Jill at Age Concern dealt with my personal correspondence and helped me with forms and now Becky at Age UK does the same thing. This is valuable help because it stops me getting stressed and keeps my blood pressure down and I could not do it myself.

Early learning experience

Julie Anne took me to Norham Open Learning Centre run by North Tyneside Council in North Shields. There I was assessed and my learning style determined. I started by doing a cookery course, which was followed by one-to-one tuition which in turn led to literacy and numeracy courses. Because of aphasia I had lost the ability to read and write. Over a six year period I progressed to Level 2 City and Guilds in both subjects.

The website

The idea for this website arose directly out of one of these classes. My tutor encouraged me to enter a competition called "My Story". It was an opportunity for people who had overcome adversity to tell their stories and have them published online by the BBC. The tutor asked one of the volunteers to help me and it was Ian who had the idea of creating this website to pass on my knowledge to other stroke survivors and their families. But of course I had an incomplete memory of what had happend both before and after the stroke, so I contacted everybody I could think of who had known me and asked them what had happened. To date the website has had over 89,400 visitors from more than 100 countries.

Getting Help

When I first started to go out on my own in the evening, I went to the nearest bar to watch football on their large screen TV. Over time I got to know two people who would help me through the next chapter of my recovery: Frankie and Tobes.After a long time they decided to go to another pub, which was the first time I had ever done that.
As time went on we did this a little more frequently, then eventually we visited McGees bar and started to use this as our main place to watch football. Over time that became a small community. Eventually I was able to go on my own ( a big change as a stroke survivor).After this period, I was able to go to other places on my own, a massive leap forward.

Helping Others

At this stage I found that one of the things that helped my recovery most was helping others. I suspect this may have been because I had to concentrate on someone else's problems rather than my own.

Pam engaged David and me as a Stroke Support Volunteers with the Trust. A number of us whose lives have been affected by stroke have been trained to attend their local hospitals and provide support for new stroke patients, their families and care givers.

In August 2011 I was elected by the people of North Shields to serve for three years as a Public Governor of Northumbria Healthcare NHS Foundation Trust. During my period of office I took an active part in Trust meetings and served on the Nominations and Charitable Funds Committees. I was re-elected in May 2015 to serve a further 3 years from 1 August. I see this as both a duty and a priviledge. It allows me to give something back after my own excellent treatment.

The ultimate compliment

One of the things I'm most pleased about, in addition to this website and the work I do for the Trust, is that I no longer look so obviously disabled. You might think that for a disabled person to be mistaken for someone who is not disabled is insulting, but it is not. In fact, I find it quite satisfying. Nobody likes to be identified solely by their disability.Recently I was paid a great compliment in odd circumstances.

I was walking along a path with my white stick extended when I heard two cyclists behind me. They were about to pass on my right so I couldn't see them but I could hear them talking.

First cyclist. " Watch out. There's a blind bloke"
Second cyclist. " He's not ******* blind. I've seen the ****** before"
As they passed I started to laugh.
Second cyclist " See, I ******* told ye".

I was still laughing when they disappeared in the distance.

Life after stroke

It’s not a better life I have now, simply a different one. The sense of achievement from trying to help others in a situation similar to mine is tremendous. I also now understand why people with poor education or learning difficulties get angry and frustrated, because I have been there. The inability to communicate is probably the most frustrating thing I have ever experienced.

Even now my education is continuing. I recently acquired the ability to use "text to speach" software on my tablet. This allows me to access my emails and have them read to me. It is a truly wonderful invention which has opened up the internet to me, thanks to Henshaws, the charity for blind people.

Postscript

So, why do I call my story “A Stroke of Luck?” The truth is that in an unlucky situation I feel very lucky. I do not suffer from the depression which usually follows a serious illness. I have no sense of loss or regret because I cannot remember most of what I have lost. In other words I never have a bad day. Every day is better than the one before as I’m constantly learning and improving.

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