Paola, 52, is Italian, works for a pharmaceutical company and was diagnosed with Parkinson’s disease seven years ago. She was one of the first people to register for ‘Run, or Walk, for Parkinson’ this year, signing up just days after our online registration was open. Together with her sister, brother-in-law and a friend, she will be driving from Italy to Brussels to participate in the Brussels 20k on May 26th!
We got in touch and were delighted that she was happy to tell us more about what motivated her to join ‘Run, or Walk, for Parkinson’ and her experience of living with ‘Parker’, her nickname for the disease. We are so looking forward to meeting her and her supporters in a few months and wish her all the best with her training!
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Why are you participating in ‘Run, or Walk, for Parkinson’?
I learned about the event three years ago from someone at the pharmaceutical company (UCB) that produces my [treatment] patch for Parkinson’s. One day he said: “Tomorrow I will participate in Run, or Walk, for Parkinson’.” And I said: “Oh, that’s good! Please try to run faster than ‘Parker’, overtake him and then make him fall.’ At the end of his run, he sent me a picture of him with his friends, holding their medals, and wrote: ‘As promised, I did it. I ran, and I managed my best time ever.’ I cried with joy. Really! It was so nice that this person I had never met sent me this message.
So, for me, the Brussels 20 km and ‘Run, or Walk, for Parkinson’ is linked to this really nice memory. That’s why in December, I checked online to see if there was going to be a ‘Run, or Walk, for Parkinson’ this year and I registered immediately.
What does it mean to you that such an event is being organised?
For me, ‘Run, or Walk, for Parkinson’ is extremely important because research is the only hope that we have that one day, ‘Parker Parkinson’ can be cured. And, by taking part, I can contribute to research. I manage clinical trials (not on Parkinson’s disease), so I know how important research is.
Another reason is that ‘Run, or Walk, for Parkinson’ creates awareness of Parkinson’s disease, which is important because Parkinson’s is not a disease that is often spoken about.
What is your personal objective when participating?
My personal objective is to have fun and stretch my limits. I’m not usually so brave, but since I have been diagnosed, everything has changed.
You have mentioned ‘Parker’ a few times. Why did you decide to give this disease a nickname?
When I was diagnosed, I felt stuck. It was difficult for my family as well. Then I thought: “We cannot always choose the cards. Sometimes life gives us cards that we don’t want to have. But we can always decide how to play those cards.” I’ve never been married. I live alone. So, I decided to transform Parkinson into a ‘boyfriend’: ‘the best boyfriend ever’. Always faithful to me. Always thinking of me. Bringing a different gift every day. And, I decided to give this ‘boyfriend’ a name. I wanted a name that sounded like Parkinson’s. So, I thought of ‘Parker’, which also reminded me of Peter Parker, Spiderman’s alter ego. So, Parker is Peter Parker, and I’m the superhero!
Ultimately Parker will win. But not today, and not tomorrow. In the meantime, my intention is to live! Not to be sad. Not to be depressed. And to make the win very hard for Parker. I want to keep my faith and a positive attitude. Parker will never take away my smile.
To be honest, Mr. Parker is not kind to me, and I don’t think I will win. But I will fight him. And I don’t want to lose, not in the very near future.
What do you miss most as a result of Parkinson’s?
To be honest, I don’t remember how I was before Parkinson’s. It’s difficult for me to answer that question.
The first thing that comes to mind is dancing. I can dance, but it’s not how it was before. I’m so rigid. I don’t like to see myself when I’m trying to dance. And I miss my hand, because my hand is now always swollen, red and cold. Extremely cold. And I’m not able anymore to perform that most Italian of movements: using a fork when eating spaghetti!
But then again, I don’t really remember anymore how things used to be. It’s as if it’s always been this way. Even though it’s only seven years since I was diagnosed! In fact – I don’t think about the future any more. It scares me. I plan for the summer. But I don’t go further ahead than one year. Because I know that life can change in just one second, so it’s better not to plan anymore!
Has Parkinson’s brought anything positive?
Parkinson’s has been an opportunity. An opportunity I would have preferred not to have though. I discovered that I’m stronger than I thought. I learnt the importance of staying positive (or trying to). And yes, I discovered the importance of health. It is true that ‘If you have health, you have everything’. We should enjoy what we have. Unfortunately, it’s typical of human nature to value things when we don’t have them anymore.
One of my friends told me that I have been improved by Parkinson’s. Before, when she invited me to go out with her for an activity, I always said: “No. I need at least one week notice, because I need to know what we’ll do. I must prepare myself.” Now you can call me just a few minutes beforehand and I’ll go out. I prefer to do as many things as possible, because I want to live well in the present. So that when in the future it is not so much fun, I will have a good past to remember.
What’s an act of kindness that has really touched you?
The guy at UCB that I mentioned earlier. And one day, I was in a bar and the music started – disco music – with a fast beat. Everyone started dancing. I remained seated. Looking at all the other people dancing, one of my friends asked if I wanted to dance. I said ‘’No’’. He asked why? And I said: “Because my body is not able to move at the rhythm of the music”. So, he said: “Then let’s dance at the rhythm of your body.”” So, we started dancing very slowly, even though the music was very fast. That felt so good. What a wonderful act of kindness!
It’s funny in fact as I’ve always been very correct. Very committed to the rules, hierarchy, duty etc. And now I have a disease that makes my body anarchic. My body can’t follow the rules anymore. There was that first time in the gym where my teacher said: “move your leg” And I said to my leg: “Go on! Move!” and my leg didn’t move. I cried then because it was a real shock not to be able to control my body anymore.
If there’s one thing you would like other people to understand about Parkinson’s disease, what would it be?
I think that many people fear illness. When you have a disease, you become the personification of their fears. So, there are people who stay away from me. It’s normal.
Yesterday, I was out with one of my friends, and they asked me: “Are you scared?”. It was the first time someone had asked me that. And I said: “Thank you.” I needed this question to be asked.
Healthy people should realise what a difference they can make by being interested, by trying to find out what the other person is experiencing, without feeling pity.