Raymond Williams

Peer Leader Stories

Ray - Cwmbran Support Group Peer Leader

Living with Aphasia

Ray Williams had never had any issues with public speaking. 

Growing up in Abra in the Swansea valley, Ray went on to study teaching at Swansea university and pursued a career in education spanning 46 years. 

As a teacher, speaking clearly, fluently and confidently in front of an audience was a skill he had practiced for decades not only in classrooms but speaking publicly at major education conferences and events.

But it was on a perfectly ordinary afternoon, helping his wife in the garden, that Ray’s life changed. 

At first he thought he was having a simple dizzy spell, but quickly realised that there were sudden gaps in his memories and in his ability to speak. 

It was when his wife asked him to say the address of the home they had shared for many years and he realised he couldn’t say it, that he agreed to go to hospital. 

Ray had experienced a transient ischemic attack (TIA), impacting his speech and control of his facial muscles. 

“The doctors told me I’d suffered some kind of ‘attack’ and showed me a scan where they pointed out 24 different things wrong with my brain. I was moved to a ward and for the first day I couldn’t speak at all. 

“I was visited by a specialist nurse who tested whether I could match words with images on a screen, and I realised how much I was struggling to do it. I could barely even sign my name.”

Losing confidence in his ability to speak and communicate, Ray started to feel isolated and withdrawn.

But ultimately, he was lucky. 

“After a few days, I really began to feel like I was recovering.”

His speech and language recognition improved, and Ray was discharged after 8 days in hospital. 

However, the symptoms of Aphasia can linger for decades and Ray was aware that his recovery could be slow and unpredictable. 

Finding Support

It was through the specialist support he received that Ray was introduced to Say Aphasia.

Speech and language therapists were able to provide Ray with practical support such as exercises he could do online to work on his speech and language recognition, relearning those skills and helping to rebuild his confidence. 

“Sooner rather than later, I was absolutely whizzing through the exercises and I’ve been a member of Say Aphasia ever since.”

As well as practical support to relearn communication skills the charity also connected Ray with other people dealing with aphasia in his area. 

“We meet in person once a month to catch up, chat and make sure each other is doing ok. We also meet online once a week. Some of the members of the group have mobility issues and some live alone which can make travel difficult. Being able to connect over the internet with events we organise gives them a lifeline.”

“We usually have about a dozen people in our online meetings, and for some of them it’s one of the few chances they get to socialise and have contact with other people.”

Ray took a lead in organising the Say Aphasia social group, planning meetings, away days and other activities for members, as well as reaching out to new potential members who could benefit from support. 

A Future with Aphasia

Despite recovering well, Ray still has moments where his aphasia impacts him. 

“Usually, with general chit chat I’m fine, but I notice that I will struggle with my words at times. If I’m tired, or talking to someone I don’t know as well, or it’s a busy, noisy environment, it can come back.”

But Ray has also found that small changes can make a big impact.

“I’ve got a little card that I carry which explains that I suffer from aphasia if I have an attack and can’t get my words out. 

“I’ve only had to use it twice, but it’s really helpful to explain to people what’s happening to you, especially since it’s not a well known condition.”

Living with aphasia comes with challenges, but Ray is keen to emphasise that it doesn’t mean you have to feel isolated and alone.

“When we’re in the group and someone is struggling with their words I do everything I can to give them time.” 

“If it’s clear someone is really struggling I might jump in and ask if they mean so-and-so. If you’re living with aphasia, it can really help to let those around you know if it helps for them to jump in like that.”

Ray also advises that people with aphasia should make sure that their partner, or someone they trust, can have access to things like bank accounts and other important information. 

“More information is the best way forward. You don’t need to feel embarrassed about your condition.” 

“Groups like ours, and others that Say Aphasia support, can be a fantastic way to understand your condition better and share with others how it impacts you to find solutions that can help give you back your confidence and independence.”

“It can feel overwhelming when you’re diagnosed with aphasia, but it’s not a death sentence. You don’t have to give up, and you don’t have to struggle alone.”

 

– Written by Alan O'Doherty

 

 

 

back to Evidence of Need