Alex Echo was diagnosed with Parkinson’s 4 years ago. He had experienced symptoms for around 7 years, including feeling off balance and small tremors. His GP reassured him he was just getting older.
It wasn’t until one day Alex woke up and wasn’t even able to write his own name, then he knew he needed a second opinion.
I’m an American-born artist. My professional art career has spanned over 4 decades, and I’ve worked on a huge range of projects and campaigns. Creating fabric designs for fashion designer Paul Smith, billboards for Absolut Vodka, a bespoke guitar for Eric Clapton, and the inaugural trophy for the Glyndebourne Opera Cup. And recently I digitally created 89 original art pieces for 81 rooms over 5 floors at the NHS-UCLH Proton Beam Therapy Centre in London. My work has taken shape in so many different forms.
So when I was finally diagnosed with Parkinson’s having experienced symptoms for several years, I was shocked. I was full of self-pity.
I was always so strong, athletic, powerful and confident. Now, there are good and bad days. Some days I feel like brittle parchment paper, like I could blow away. Other days I feel very strong and can laugh.
I find huge humour in things. I’m aware that I look like a drunk, but I’m so sober it’s not even funny. I’ve been in recovery from alcohol addiction for over 24 years now, and my sobriety kicked in, I had to live 1 day at a time. I’m not a victim. I can be an advocate.
I know I’m not alone with the Parkinson’s community
The first person I told about my diagnosis was my friend Nick. He put his arm around me and told me it’s going to be ok. And then I just started talking about it. I relished in the kindness and compassion people showed me. I want to give that back. I want to share the love.
I’ve always had a strong fellowship around the world in recovery. With Parkinson’s I have a whole new fellowship and I know I’m not alone. If they can laugh at themselves, then I can laugh at myself. So it’s been really wonderful to be introduced to the huge community of people who are battling something really quite debilitating. But with humour. I’m proud to be part of it.
The biggest love can be shown in the littlest ways
For me, talking to my daughter and giving her support was like ripping off a bandaid. I said "your dad has Parkinson’s. But don’t worry. I’m going to be ok." We went step by step through knowledge and information and she said "yeah, you’re going to be alright".
I softened it to my family by making it funny. We’ve softened the blow by making it familiar. It’s not to be feared. Everyone is aware I’m ok, I’m ok with it. My family knows I’m ok with it and laugh with me about it.
But the biggest love can be shown in the littlest ways. People show they’re aware of me, of my actions, and they give me space and dignity. That means the world to me.
At the dinner table when my family are all together. They can see me struggling to get a fork full of food to my mouth. But they don’t stare at me. I know they’re aware of my struggle, but they offer me great dignity. And that’s sharing the love.
Whatever excites your mind, give it a shot.
My Parkinson’s has slowed down my painting career. 5 years ago I used to paint 40 paintings a month, now I’m down to 10. But truthfully, I think my paintings are better now because I take them more seriously.
It’s been difficult, but my Parkinson’s has forced me to adapt and evolve. I have a predicament but I don’t have a death sentence. Now I create digital art. I’ve had to give up the majority of my painting but it hasn’t stopped me being creative. Adapting to the digital realm of art has been a lifesaver.
There are no rules in art. I would really recommend it to anyone who’s been diagnosed with Parkinson’s. But let’s be clear: there are no rules in art. No rules. You can’t make bad art. Everyone’s an amateur. It’s a zen meditation. When I’m doing art, time disappears. Parkinson’s disappears. Worries disappear. Art saves my life every day and has for 42 years.
Whatever excites your mind, give it a shot. Whether you’re writing a book or cycling across Britain or doing poetry or art. Find that well done in yourself and share it. Share the love. That’s what it’s about.