What Pride means to me: Ian’s story

I was diagnosed with Parkinson’s in 2014 but noticed symptoms around a year before that. I noticed my handwriting getting smaller at first, then my hand just stopped moving. It was frozen and I couldn't write. I knew something was wrong. 

Difficult to get a diagnosis

After that, others noticed stiffness with my walking so I booked in with my local GP. Like many people, my diagnosis wasn’t straightforward and I was told twice that my symptoms were due to anxiety. Early diagnosis relies on having specialised experience with Parkinson’s, which is why so many people are initially misdiagnosed. 

I finally managed to get a neurologist appointment at the Kobler Clinic at Chelsea and Westminster Hospital, which I already have a relationship with from my HIV diagnosis. The neurologist diagnosed me within seconds of walking into the room. 

Parkinson’s curve balls 

Strangely, it was a relief to get my diagnosis. However, for me, it was a worse diagnosis than HIV. I haven’t had a problem with HIV since I went on medication. Parkinson’s has thrown me many curve balls, though. My HIV is now so well controlled, it will never turn into AIDS. On the other hand, Parkinson's can’t be controlled. The symptoms can be managed but ultimately, the condition is progressive. 

Despite this, being diagnosed with Parkinson’s has given me an opportunity to deal with the condition in a different way than my HIV diagnosis. When I became HIV positive, I threw myself into drugs because I wanted to destroy myself. I felt toxic as a person and I felt rejected by society. 

A movement from shame to pride

With my Parkinson’s diagnosis, I want to use the opportunity to help and guide others. What I’m trying to do is celebrate the fact I have Parkinson’s. I want to use it to let people know that you don’t have to be ashamed about who you are, whether that’s being gay, HIV positive, having Parkinson’s or anything else. This movement from shame to pride is what the London Gay Men’s Chorus’s Proud concert is all about. 

Parkinson’s is a really tough disease. I couldn’t get through it myself. You lose bits of yourself every day. It takes courage, especially from other people who are in this fight with you. I see them as warriors who are with me in this fight. 

And singing with other people is fantastic, it’s like an analogy for support. There are people who are a little weaker in the choir, my voice has gotten stronger since joining but I’m slower at singing because of my Parkinson’s. There are people who are a lot stronger and I’m supported by them vocally. This choir is incredibly accepting and it’s that support system that helps me enormously.