I want more people to know about the Aphasia and Accessible Voices group. It has given me a sense of worthiness again. I know the work I am doing with the group is making a difference.

Stroke survivor Rob

The day everything changed

On 24 September 2020, Rob had been at the gym. Three hours later, he collapsed in his kitchen.

He said: 'I had just started cooking. I bent down to put my gym kit in the clothes basket. The next thing I remember was lying on the floor, unable to get up. I couldn't walk. I couldn't call for my wife, Nova. 

'I was on the floor for what felt like hours. Nova noticed there were no sounds coming from the kitchen. When she saw me, she panicked. We knew about the FAST symptoms for stroke from TV adverts. Nova suspected a stroke and called 999.'

The ambulance arrived after 15 minutes. Rob said: 'Although we were grateful for the short wait, Nova was told that relatives were not permitted to travel with patients due to Covid-19 lockdown restrictions at the time.

'I remember grabbing on to Nova’s hand in fear as she left the ambulance. In the months that followed, she told me that she could see from my eyes that I was pleading for her not to leave me.'

Race against time

Rob was bluelighted to the Queen Elizabeth Hospital in Birmingham. A brain scan confirmed an ischaemic stroke. He was later told that fatty tissue had led to plaque building up in his arteries. A segment had broken off and travelled to his brain. This caused a blockage to the blood flow. 

Doctors carried out an angiogram, to check the blood flow and locate the blockage. The blockage was severe and too risky to remove. Instead, they treated Rob with a clot-busting medication called thrombolysis. It restored blood flow to his brain. 

Rob said: 'When I woke up the next day in the hospital bed, I couldn't believe it. I felt so alone because my family weren't there. 

'The stroke took away my speech. I couldn't say a word. I couldn't express my feelings. It also took away the use of my dominant side. I couldn't walk. I couldn't write. I was incontinent. My vision was also affected.

'At that time, I didn't want to live, because I couldn't see a way through it.'

Relearning movement, speech and hope

In October 2020, Rob was transferred to Moseley Hall Hospital in Birmingham for rehabilitation. He stayed for 11 weeks, working with therapists to improve his mobility, speech and independence. Due to Covid-19 restrictions, contact with his family was through video calls only.

He said: 'My speech and language therapist (SLT) would seek me out every morning to practise. Towards the end of each session, she always asked how I was feeling and whether I wanted to stop. I always wanted to keep going.

'My wife and I were initially told that I would be unlikely to regain my speech. But within a week of starting rehabilitation, I was able to say a couple of words.

'My SLT recorded me practising, 'Hello Nova, I love you'. When Nova heard me say it for the first time, she cried. My SLT said that in 15 years of practice, she had only seen one other person regain speech as successfully as I had after such severe damage from a clot.'

Creating new memories

Rob was discharged home in December 2020, just days before his 60th birthday. He received NHS community therapy from the Dudley Rehabilitation Service and Moor Green Rehabilitation Unit. 

With support from Nova and rehabilitation teams, Rob focused on adapting to life after stroke and making new memories with his family. 

He said: 'Life was different in so many ways. I had to sleep downstairs. I learned to live using a wheelchair. I did therapy every day either with a therapist or with Nova.

'I made goals for myself and set timeframes. I wanted to walk my daughter down the aisle and make a speech at her wedding in autumn 2021. I achieved both. I pre-recorded the speech in case I was too nervous on the day. This was played on her wedding day and there was not a dry eye to be seen.'

Using lived experience to make change

In January 2024, Rob was invited to join our Aphasia and Accessible Voices group. Another stroke survivor he met during rehabilitation suggested it. Rob attended an online meeting and became a member in March 2024.

The group advocates for stroke survivors living with different access needs. This includes people with with communication difficulties. Run by our Accessibility Team, it helps shape projects like Communication Support Packs and website improvements.

Rob said: 'I was curious to find out more. After speaking with the team, I thought it sounded great. So far, I've worked on internal projects, such as making the charity's expense form easier to use. And external projects involving Network Rail and Nationwide.'

Accessibility Assistant, Janet Rockliffe, said: 'Involvement work is always so interesting because I'll have my idea of what I think about the project, but the group will start talking about the most amazing ideas that no-one else has thought of. These ideas make such a big difference.'

The group helps combat loneliness. I look forward to the weekly meetings with Janet, my friend and the other members. Within the group, we share tips and resources with each other.

Rob, stroke survivor

Moving forward

For Rob, staying determined is crucial for moving forward. He has returned to driving, which he admits was 'daunting' at first. 

He explained: 'It has given me back some independence.'

Rob joined the Motability scheme, which organised for adaptations to be made to the car. 'There is an extra accelerator on the left side, so I only have to use one foot,' he said. 'The steering aid on the wheel means I only have to use one hand. It's great.