Noel Robinson

I hope in reading this, you'll find help and encouragement. If like me, before my stroke, you didn't know what Aphasia was. Now after the event, are trying to come to terms, with a love one who now suffers with it.

I suffered my haemorrhage/ stroke/ aphasia on 04 June 2000. I was admitted to the North Manchester General Hospital at 8 o'clock on the Sunday morning, 8 hours later given a scan and X-rays, and a long wait till the following morning at 11 o'clock when the consultant said I could have some paracetamol, it was the left hand side of the brain. In the resulting aftermath, I was left paralysed all down my right-hand side, unable to communicate, read and write. Talking - I couldn't remember how to talk, I didn't even remember my name.

I was 50 years old, I didn't fit the parameters of a general stroke sufferer, my consultant said I was just unlucky. Then he turned round to address his junior doctors and said, the best thing for this patient would be repetition work. He was talking about physiotherapy, but I misunderstood and from the next week, when I eventually got someone to understand what I wanted, asked for an A4 ring binder filled with paper and some pens, and the alphabet printed on the top of the page. I didn't know it was called the alphabet, I didn't know what the letters were called, and I didn't care. But it was familiar and reassuring, in a world of chaos and uncertainty you find yourself in. Because it wasn't a word, or a sentence to understand you didn't have to think. I found it very therapeutic and relaxing, just to copy over and over again.

Then at two months, when I could manage it, to distinguish and remember what certain words looked like, ie nurse, doctor, breakfast, dinner, tea about 20 words in total, someone typed up a 24 hour clock, ie 12:10, 12:20, 12:30 and so on. So with this simple method, I could keep a diary, ie doctor mornng 11:00, dinner 12:30, and so on. Lorna my wife, expected me to do this, to keep her informed about my day on the ward. Thinking back I am sure what I did in the first few weeks and months laid the foundation of my recovery.

Did you know how tiring it is just to think and wonder? I was amazed. Where had all my stamina and strength gone? - years and years of strength, just gone, a new born baby had more strength than me. I'm telling you this in case you underestimate the traumatic effect of getting a stroke.

And because I couldn't remember how to speak, I thought maybe what about singing. I had a Walkman cassette brought in for me with ABBA the 1970s group greatest hits, familiar and reassuring, and at night I would fall asleep listening to them, and the little voice that attempted to sing along was born.

Someone brought me in a cassette of names, the same name said very deliberately, spoken with a pause in between, for about 20 times, then the next name, just the immediate family, about 10 names in total.

I'm not saying it's easy, far from it, but I believe in doing this I was giving the devastated pathways in my brain a fighting chance to begin firing again. Now 18 months has elapsed, I use a voice recognition software to counter the dyslexic qualities of the aphasia, to correspond all over the world.

To the families and carers, who having found themselves in a position with an aphasic relative, it's up to you to bring a little peace and sanity back to them. Be strong. Stronger, than you're ever been before in your life.

Talk to the person with aphasia as an adult and not as a child. Avoid talking down to the person.

During conversation, minimize or eliminate background noise (i.e. television, radio, other people) whenever possible. Make sure you have the person's attention before communicating.

Praise all attempts to speak; make speaking a pleasant experience and provide stimulating conversation. Encourage and use all modes of communication (speech, writing, drawing, yes/no responses, choices, gestures, eye contact, facial expressions).

Give them time to talk and permit a reasonable amount of time to respond.

Accept all communication attempts (speech, gesture, writing, drawing) rather than demanding speech. Downplay errors and avoid frequent criticisms/corrections. Avoid insisting that each word be produced perfectly.

Keep your own communication simple, but adult. Simplify sentence structure and reduce your own rate of speech. Keep your voice at a normal volume level and emphasize key words.

Augment speech with gesture and visual aids whenever possible. Repeat a statement when necessary.

Encourage people with aphasia to be as independent as possible. Avoid being overprotective or speaking for the person except when absolutely necessary. Ask permission to do so.

Whenever possible continue normal home activities (i.e. dinner with family, company, going out). Do not shield people with aphasia from family or friends or ignore them in a group conversation.

Rather, try to involve them in family decision-making as much as possible keeping them informed of events but not burdening them with day to day details.

God bless you all. Noel.

Thanks to Noel 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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