“I’m still me” Raising awareness of MND

After months of uncertainty over the cause of her speech difficulties, Yvonne Johnson, a mum of three working for a local authority in London, was eventually diagnosed with MND in May 2021.

Since then, Yvonne has experienced first-hand how people from different cultures react to her MND, and how it makes some very uncomfortable. She’s determined to not only raise awareness of MND, but also how different cultures approach the condition.

Yvonne said: “Culturally, my family express ourselves in different ways – we’re more dramatic, we’re louder, we’re just more. On one hand, the Caribbean side of my family are quite open to talking about my MND. Before I explained my diagnosis to friends and family, they have said to me that they thought I was tipsy when I’ve spoken to them. On the other hand, my family don’t like to talk about sickness.

“When I speak to them, it’s easier to tell them that I have a condition that affects my speech, rather than go into detail about MND. We don’t always know why a person is sick, unless we are close to the family. When someone dies, we try to be discreet about asking the reason for their passing. Culturally we are very guarded about anything personal.

sounded. They didn’t want to hear me talking. It’s like when I tell people I have MND, they think I’m going to die there and then. They forget, I’m still me.

background and my ethnicity, so I could ask them if they were going through the same thing culturally as me.

“When I was in Barbados for my mum’s funeral, I saw how uncomfortable some people felt when I talked. If I’m tired, I don’t have the energy to talk, and, when I do talk, I sound drunk. I’d talk to people in the shops, but noticed they’d stop me talking and pretend they could understand me when they couldn’t. It was clear it was because they were uncomfortable with how my speech

“I decided I needed to let people know that there’s a problem. I went on the MND Association’s Facebook page and loved what I saw. There are some really positive people there, but I didn’t see anyone who looked like me. I even asked my speech and language therapist whether there are any black people with MND in the UK, and she told me that there are.

“I looked up statistics, but they mainly come from America. I couldn’t find anything in England, so I felt a bit isolated. I wanted to be able to communicate with someone from my

“I did a video to educate my family and friends about MND. I introduced myself, explained my condition, how I’m under represented and the challenges that we have culturally. I also explained that I will continue to be me for as long as I can. As well as the video, I’ve created social media accounts to raise awareness, and I’ve educated MND Association teams at their staff development day.

“Different cultures’ lack of awareness makes me feel like they’re behind on their understanding of MND and how I can still live life with it. Some communities feel embarrassed by MND. We need to change that.”