There Isn't One Parkinson's Journey: Matt's story

Matt was diagnosed with Parkinson's 3 years ago. He talks to us about managing the condition while working.

I’m Matt. I've got Parkinson's. I've had it for 6 years at least, but I've been diagnosed for 3. 

It started with a pain in my right shoulder when I was recovering from bowel cancer and I thought the cancer had come back. But it went on with dried skin, fatigue, my right foot dragging, lots of different things. 

I remember listening to a podcast with Paul Sinha and having to turn it off because his symptoms were so similar to mine. I finally got diagnosed because of my walk.

When I was first given my diagnosis of Parkinson's, it was devastating really. You don't know what to expect. You think the worst. You think it's going to be the end of your life. You go online and you see all the symptoms. It's quite overwhelming. There's no way of being told exactly what to expect because it's so different for everyone. It’s so individual.

It's difficult balancing a life with Parkinson's and family and organising your life. I was working as a psychotherapist when I was diagnosed. I'm now also a peer support worker at a drug charity. 

The symptoms affected my work. But the symptoms that people don't really notice or see are things like fatigue. For me, that’s the hardest to cope with. It knocks me out in the afternoon. It wasn’t that much at first but looking back on it, I planned my work day to cope with fatigue without realising that's what I was doing. 

I sit down for a job as a psychotherapist, so I'm not on my feet all the time. Equally, I need to get some exercise. I need to keep myself limber and not so stiff. So that's a challenge as well. I also try to make sure I get a nap and I have to plan my days around that.

It’s OK to feel rubbish. It’s OK to feel depressed and angry. But it’s not a life sentence. There is hope.

Working with Parkinson’s

With the right support, you can continue working for many years with Parkinson’s. Sometimes, you may need to make changes to your working life.

"The symptoms that people don’t really notice or see are things like fatigue. For me, that’s the hardest to cope with. It knocks me out in the afternoon."