Finding my voice: Paul's story

I was diagnosed with Parkinson’s in 2018, when I was 52. It can be overwhelming because of the uncertainty. There are 40 different symptoms. You think, which one of those roads am I on? Even today, I still don’t know where my Parkinson’s is taking me because it’s not fully understood.

The trio of fear 

When I was first diagnosed, anxiety hit me like I’d been punched between the eyes, and I didn’t have a clue what it was. I ran a busy office at the time, and I’d worked with some of the people there for 25 years. 

All of a sudden I couldn’t speak to them. It felt like the walls were closing in. As well as anxiety, I struggled with insomnia and fatigue. I call them the trio of fear. If you’re not sleeping, you’re fatigued, and anxiety comes into play. You wonder: "How am I going to get through the day? I’m so tired," and this goes on and on in a vicious spiral.

Losing my voice

In June 2025, I noticed my voice started to get very soft and very croaky, and by September 2025, I’d lost my voice almost completely. People kept on saying, "Sorry, can you say that again? Sorry, I can’t hear you."

They’re not doing it in a nasty way. But it pushes you more into a corner, it makes you feel more isolated. And Parkinson’s can be quite an isolating condition as it is. I was getting to the point where I was having to write things down to communicate, and that was very, very frustrating. 

I asked my Parkinson’s nurse about my loss of voice and she recommended a 5 week speech therapy course. 

They made us feel that yes, you’ve got Parkinson’s, but you’re welcome here, you can relax.

Learning to speak again 

The course went through the mechanics of how the voice works, why Parkinson’s takes your voice, and how you can be heard more clearly. You tend to try and get the words out quickly before you run out of breath, and to stop people finishing the sentence for you. 

We worked on slowing the voice down, raising the pitch, looking at the person as you spoke, voice exercises, and tongue-twisters. I’m not normally one for singing. I’m totally embarrassed about those sorts of things, and because of Parkinson’s I can’t remember things very well. 

But I joined a choir, just a group of people that got together to sing a few lines, and that really worked for me. As I gained confidence, I found I was enjoying it more, and I was more audible.

A public test 

Part-way through the speech therapy course was my daughter’s wedding.

I had my other daughter and my nephew on hand to help me if I couldn’t quite get through it. To prepare for the speech, my wife and I went outside and did a lot of voice exercises. 

And with the aid of a microphone, I gave the speech. I was so proud, and there were a few tears. 

My Parkinson’s nurse 

I have a very good relationship with my Parkinson’s nurse, Louise, going back to 2018 when I was diagnosed. In 2021, out of nowhere I developed very bad ulcerative colitis, and was spending 12 hours each day on the toilet. By October that year, I needed a stoma operation as my health was deteriorating rapidly. During my 5 weeks in hospital, Louise was on hand to sort out my meds because I wasn’t absorbing them properly. 

Despite the best care from the nurses and doctors, I lost a lot of weight and battled various illnesses and infections. Louise was constantly in touch to make sure I was OK, and also provided encouragement to my wife Sharon, who, as my carer, was starting to break down from the stress of dealing with it all. 

‘The Board’ 

Fast forward about a year, Louise asked if I would share my story with the hospital board. I put together a little bit of a slideshow, and I thought there would be about four or five people in the meeting room. But when I arrived, there were about 70 or 80 people there. It was rammed. 

My anxiety went through the roof, and I didn’t know whether I was going to be able to do it. But I pushed through. It was extremely emotional. By the time we finished, the whole room was either clapping or crying. It was a really surreal moment. And it inspired me to write a poem about it, called ‘The Board’.

Louise actually had this poem read at her own wedding a couple of months ago. I’m incredibly honoured to have something of mine read at somebody’s wedding. It means so much to us both in different ways. I wrote the odd poem when I was younger, but nothing like what I do now. If you’d said to me five years ago that I’d write two books of poetry, I’d go, “Yeah, right. No chance.”