Aphasia Awareness Month: Pursuing a new normality

In 2015 we shared Peter’s story. Peter was 61 when two strokes within four days left him with aphasia, a condition that affects the brain and leads to problems using language.

After his stroke, Peter didn’t speak for almost two years. Today, five years later, he now uses some speech alongside other strategies.

As part of Aphasia Awareness Month throughout June, we caught up with Peter and his wife, Carol, to find out how they live with aphasia.

“I now have some speech and I use miming, gestures and drawing to communicate” explains Peter. “I also use my iPad to show where I’ve been and what I’ve been doing. Initially I lost my writing skills but slowly, with practice, I have started writing out a word as a prompt for speaking it.

“It’s a long, slow process. It’s not easy and you have to practice every day – even when you’d rather not – but I’m pleased I’m still making progress.

“Aphasia is a horrible, isolating disability – that hasn’t changed! It still makes me sad that I can’t join in conversations easily and that there is such little understanding about the condition. People often see the disability and not the person - they forget you led an active life, had a successful career. Many of our friends have faded away – some say they’re upset by my stroke and they want to remember me as I was – but I’m still here, I’m still me!

“When you first develop aphasia, there is a grieving process. But you can get through it if you’re persistent, determined and, in my case, bloody-minded! I still have my spirit, my love of life. And I’m lucky that I have a wife who is encouraging and supportive.”

A measure of Peter and Carol’s spirit is their recent trips around the world.

“Carol and I are determined that we won’t be defined by my stroke or let it restrict us from doing the things we want to do.

“In 2015 we travelled to South America, the Falklands and the Antarctic and, earlier this year, we visited Australia, New Zealand and Singapore. The Antarctic was beyond anything we could have imagined. The tranquillity is awesome. We sailed through iceberg fields; saw mountain ranges, glaciers, ice fields, amazing wildlife. I was sitting in my wheelchair sailing in a Zodiac a foot above the water, seeing everything close up; it’s something I never imagined would be possible five years ago."

“I still enjoy art too – something I never did before my strokes - and I’m also trying to do a bit of gardening. We recently visited the RHS Chatsworth Flower Show. Strangely I can still sing - I’ve always enjoyed music and dancing, so I’m glad that part of me is still there. I also take part in research whenever I can – it’s a way of advancing knowledge for future generations whilst also helping myself. I have just started a new study with the University College London and I’m involved with Nottingham University and the Stroke Research Partnership.

“I want to keep positive. I want to carry on travelling. And I want to continue making progress with my speech. A recent operation on my ankle and a further operation to straighten my toes should help me improve my balance and walk as well – I’ll no longer need a leg splint which is another positive!

“We have friends that we met whilst in Australia visiting next month. New friends never knew the ‘old’ me but are quite happy to accept the ‘new’ aphasiac me! Life goes on and it can be good – different but good!

“When you meet someone with aphasia, don’t assume they’re a sad, disabled soul with a limited intellect – get to know them! They may be pursuing a new normality, trying to build an interesting, stimulating life. But you won’t know unless you talk to them. Nobody should feel isolated.”

For details about aphasia self-help groups in Nottinghamshire visit www.nottshelpyourself.org.uk or contact the Trust’s Speech and Language Service via communications@nottshc.nhs.uk