“I’m just fighting my corner”

In the thirteenth in our series profiling the bloggers supporting the World Parkinson Congress 2019, we talk to Joe Lacy. The Irish blogger, who was diagnosed with Parkinson’s four years ago, discusses why “exercise is key” to dealing with the condition – and how he’s helping others cope with their diagnoses

Describe yourself in a sentence. 

I’m a roaming Irishman who makes the best out of every place and situation I find myself in.

Do you have a particular audience in mind when you’re writing?

I set out to blog to share my thoughts in a photo journalistic way with family, friends and a wider audience, but it’s developed into focusing on how I’m dealing with Parkinson’s. I now share it more with newly diagnosed patients to encourage them to exercise.

Is there an aspect of Parkinson’s that you’re most passionate about?

When I was first diagnosed the doctor said to keep active and I’ve taken that on, big time. For me, exercise is key to fighting Parkinson’s.

How widely read is your blog and in which countries?

I’ve had a good spread globally, but western Europe and the US are the main hits. My blog views are sporadic, and I’ve been on lapse recently due to a house and country move.

Have you been surprised by the level of interest you’ve attracted?

When I wrote my blog post ‘Dealing with Diagnosis’, I was shocked to see all the hits on Facebook and delighted to receive so many comments on how it had encouraged others.

Which of your posts has attracted the most interest from your readers?

My experience running three marathons since diagnosis has received the most attention.

Which has been the most controversial?

I don’t think I’ve written anything controversial. However, sometimes people are surprised at how open I am to discussing my Parkinson’s. I still come across people who are keeping their condition hidden due to what they perceive as stigma.

Talk us through your routine: when do you find time to blog? 

I’ve been very poor at blogging lately due to a major home move, but usually I have a seed of an idea and I develop it in my mind first, then onto paper and finally into a blog post. I don’t set aside a particular time to blog – it’s more of a continuous, ongoing process.

What physical challenges do you face in writing and do you use any technology to support you?

I’m a two (sometimes four) finger typist and I have a stickiness on my left hand. Therefore I sometimes leave a finger on that side too long or miss a letter. Spell check sorts it all out but it’s a slower process than it used to be.

What do you hope people will take away from reading your blog?

I’d like to think that even the most affected people with Parkinson’s would do a few stretches in front of the telly when they see what I have done as an over 60-year-old to keep active. I hate to use the word ‘inspire’, because I don’t feel I’m doing anything special. I’m just fighting my corner.

How did you get involved with the WPC? 

I read about the World Parkinson Congress in Portland, US, in 2016 and felt it was an excellent opportunity to learn more about the disease and that proved correct. Following that, I wanted to help spread the importance of having those four key participants (patients, caregivers, doctors and researchers) together in the same place so I applied to become a WPC blogger – and I was lucky enough to get accepted.

Can you share any memorable moments from the last one you attended?

One of the symptoms I have is sweating and I was keen to learn more about that, so I attended a session on the different symptoms people have. Nothing was said about sweating until the questions and answers session when a member of the audience asked several great questions related to that.

While the answers were not particularly helpful, I felt that the person who asked the questions was a kindred spirit and we had a lot in common. I waited until the session ended and approached that person as they exited and said: “Excuse me but I was interested in the questions you asked, do you have a problem with sweating?”

After a short pause they replied red-faced: “No, I don’t but a patient of mine does”.

What are you most looking forward to at WPC2019?

Kyoto beer – and learning more about other people’s experiences dealing with the disease.

Read more:

“Fear prevents people from living a productive life”

“Since being diagnosed with Parkinson’s, my world has expanded”