Running the NYC marathon to fight Parkinson’s disease

Liz and Kamal (center) with their guides from Achilles International.

This is the English version of the article that appeared, in Spanish, on Con p de párkinson.

A couple of weeks ago, my friend Liz wrote on our FB group that the Parkinson’s Foundation had extra spots for the TCS New York City Marathon (Nov 7). She was thinking about running again, as she did in 2019. Our friend Kamal showed interest, but also concern, as she had never done it before. Both of them have since signed up!

I talked to them in early October, and they shared their training plans and their enthusiasm about the challenge. This is their story.

On training and running

Liz had just finished the London marathon the day before we spoke. She didn’t really go to London: runners were given routes in a city of their choice. She did her first marathon in 2019 and had three guides, three volunteers from Achilles International. Kamal is also training with Achilles in Central Park, and she’ll also be running with a guide.

Achilles International is a global organization that supports all sorts of athletes with a wide variety of programs. One of them is matching runners with guides for events like the TCS NYC Marathon. Running with guides is essential when you have a disability. I remember seeing Liz, in the crowd, but safely guarded by her Achilles people. They made sure she had enough space and nobody got in her way or made her trip.

On why they’re running

Interestingly, both said because they can. It’s not only that the Parkinson’s Foundation made it possible, but also being able to do it. Kamal had a fall a few months ago, and she says she had problems just getting to her kitchen. And now she’s running… because Liz asked her!

They’re also running for the benefit of the Parkinson’s Foundation. A few months ago, Liz participated in a cycling event organized by them, and she mentioned to the events coordinator that she had run a 10k that same morning. Lauren remembered her story and reached out when she found herself with extra bibs for the NYC Marathon. Usually, runners pledge to raise $3,500 for research on Parkinson’s disease (PD), but it was waived for them, as they had less time than usual. However, at the time of writing, Kamal had raised $1,515 and Liz was fast approaching $1,000!

On what gets them excited

Liz didn’t hesitate to answer this one: the crowds in NYC are amazing, the cheering, the energy. One of the benefits of running with a disability is that you start early, even before the professional runners. So, you find yourself alone on the imposing Verrazzano bridge, between Staten Island and Brooklyn. And then the pros run by, and you see them go so fast and think: “whoa, they’ll be done by the time we cross the bridge!”.

Kamal has never participated in the NYC marathon, not even from the sidelines, as she moved here with her family shortly before the pandemic hit. Liz shared with her a video that showed her how it feels, and she was convinced!

A few words to sum it all up

Kamal: I’ve never run, and I’m so excited about it now. The very fact that I never thought I could do it makes me happy, I’m over the moon that it’s doable. I don’t care what people think, whether I finish or not, whether there are people cheering. I want people to be part of it, especially people like us, who struggle.

Liz: It’s essential that you talk to your doctors about your plans to run a marathon. Also, make sure you listen to your body, if it gets too much, it’s ok to stop.

Last but not least

If you plan to attend the TCS NYC Marathon, let us know!

If you are running, we’ll track you on the app. If you want to cheer runners, join us in Long Island City, Queens. We’ll set up a cheering station (exact details to follow).

Photo: Kamal and Liz with her guides during one of their training meetups, New York, 2021.

A follow-up to "Let's call it Solpor"

I sent the post to Randy shortly after writing it. He replied:

That's wonderful! I'm going to laminate a copy and attach it to the back of the frame. (Maybe one day our children's children will read this and have to read about the condition that is no longer a problem in their world because a cure was discovered.)

“Let’s call it Solpor”

This is the English version of the article that appeared, in Spanish, in Con p de párkinson.

From an email exchange with Randy LeBlanc

Galicia

I was born and raised in the NW corner of Spain, in a beautiful and luscious region called Galicia. Many people have heard about Santiago de Compostela, a major pilgrimage destination, where St James the apostle is believed to be buried in a magnificent cathedral.

Tenerife

The Canary Islands are a Spanish archipelago off the coast of Africa. In November 2020, Paqui Ruiz, who was diagnosed with YOPD a few years earlier, started Con p de párkinson. As a meeting point for Spanish-speaking women with YOPD, it grew from a blog to the website where you’re reading this today.

New York

I was diagnosed with YOPD in New York in 2016, and I came across Con de párkinson shortly after it was created. As I’ve written somewhere else, it was a match made in “Parkinson’s heaven”: women, Spanish-speakers, YOPD.

In 2021, in the middle of the COVID-19 pandemic, I launched a silent auction from Parkinsonic, my own website. I had volunteered to raise $2,500 for #WPC4YOPD, a travel grant fund created specifically for YOPD to be able to experience the World Parkinson Congress in Barcelona. Talking to Paqui one day, she offered a couple of her paintings to be auctioned. One of them didn’t have a title, and she told me to give it a name in honor of my parents. “Let’s call it Solpor” I said, “it means ‘sunset’ in Galician”.

Baton Rouge

Randy Leblanc was working as an engineering in Louisiana when he was diagnosed with YOPD in 2005 a few months before turning 46. He lives in Baton Rouge with his wife, and they have four children and six grandchildren. He’s very active in the local PD community, where he runs a local support group and the Community Action Committee for the Davis Phinney Foundation, trying to create awareness and work with the local medical community to offer care and exercise programs for PWP's.

In 2021, following links from the WPC website, he came across the auction. His wife bought some note cards with PD art and then they saw Solpor.  Having grown up on the South Louisiana coast, Randy spent much of his childhood exploring the marshes, bayous and bays of the area.  “This painting just spoke to me like a hot, sultry morning on the bay in our boat with my family waiting for the summer morning haze to burn off”, he wrote.  The painting came with “a bonus”, he added, that of being able to lend a supporting hand to his PD “sisters”.

In 2016, Randy and his wife were set to attend WPC in Portland, Oregon. Unfortunately, their house was severely damaged because of flooding in the area. They had to rebuild it entirely, and, wishing to leave their house as simply as possible, added no pictures or art to the walls.  They decided to leave it that way until something came along that really "spoke" to them.  There are now two pieces of art in their living room. The first is a photograph/painting of a lone cypress tree in the middle of an area lake that they purchased at an auction/fundraiser for PD in New Orleans.  The second is Solpor by Paqui Ruiz, with a frame that Randy made in his woodworking shop. He used a beautiful piece of black walnut from his sister-in-law's property in the Shenandoah Valley of Virginia.

Baton Rouge - Tenerife - New York

None of us chose to belong to the “PD Club” (seriously, who would?). However, all of us agree on one thing: when you’re a PwP, chances are you’ll meet some amazing people who are fighting on your side. And that’s what helps us face the daily challenge of living with Parkinson’s.

Randy, Paqui and I hope to meet in person in Barcelona in 2023. Until then, Solpor connects us!

 PS Click here for the follow-up to this post.

On networks, conferences and Parkinson's disease

This is the English version of the article that appeared, in Spanish, on Con p de párkinson.

On networks, conferences and Parkinson's disease

I am a translator and, at work, I am fortunate to interact with a huge number of colleagues who are in training. Whenever I can, I strongly encourage them to participate in associations and, if possible, in in-person events such as conferences. Why? Because having a network of contacts is essential when you are a translator: you never know where an interesting project, a possibility of collaboration or, directly, a job may arise.

 Having recovered from the initial shock of the diagnosis, it was logical and even normal for me to start thinking about how to build a new network. Although it goes without saying, the internet is an never-ending source of groups, organized by age, sex or gender, geographic location, specific symptoms, exercise or even marital status. However, although the World Parkinson Congress 2016 was held in Oregon - just across the country from me - I didn't follow it in much detail and decided against participating in the next one, held in Tokyo in 2019. At the time, I didn't know how much I would regret it.

 Between 2016 and 2019, I continued to weave my web - a little in person, a lot in networks. Even today, it still amazes me that there were hardly any groups of YOPD people New York. At one point, I met Liz Day, who, armed with firece determination (she ran the New York City Marathon in 2019, ladies and gentlemen), created a group that spans the city and surrounding areas. I met Larry Gifford, Soania Mathur and Tim Hague, who would eventually assemble the PD Avengers; Richelle Flanagan, Kat Hill and Sree Sripathy, who created the Women's Parkinson's Project; Becca Miller, Christine Jeyachandran, Jonny Acheson, David Sangster, Heather Kennedy and so many more. Many of them traveled hours and hours and met in Tokyo in 2019. I followed the Congress with a little more attention and, despite being thousands of miles away, I noticed that something was moving, as strange as it sounds, among people with a movement disorder. When they announced that the 2022 edition would be held in Barcelona, I almost reacted like Mafalda when she found out she would have a baby brother (spoiler: she faints).

Photo by Vitor Monteiro on Unsplash

 At the end of 2020, I saw a tweet that caught my attention. It included an article that referenced Helen Mirren and, they said, her Parkinson's, as well as a new blog, Con p de párkinson. I responded to the tweet by pointing out that it is not clear that Helen Mirren has Parkinson's and that, in the interview they mentioned, she was talking about her process of becoming aware of Parkinson's as a result of the experience of someone close to her. I then sent a message to the bloggers to thank them for the initiative. Suddenly, my network was spreading in my country as well. And here we are, six months later, with around 30,000 hits on the blog and 114 articles by almost 40 authors.

 You go to a congress for two reasons: to learn something new from the presentations and to weave that network I was talking about. So, between May 17 and 19, the first virtual edition of the WPC was held. It was a very intense three days... of videoconferences. As I write this article, I have not yet seen all the recordings. We talked about hard science, science from an informative point of view, living well with Parkinson's, new treatments and palliative care. As it was online, the network has not been as dense as I would like, but I hope that the return of in-person events will allow it very soon.

For a translator, participating in a congress is an investment. For a person with Parkinson's, too, but the benefits of this investment go far beyond the economic aspect. Ens veiem a Barcelona!

On the radio!

In late 2019, I participated in a survey about public transportation in New York and passengers with disabilities. WNYC, a member of NPR, found my answer interesting enough to interview me! Please read, and listen!, about it here.

Parkinson's CHAMP

In 2017, Sabela and the Hotsteppers, our team at the Parkinson’s Unity Walk, was featured in their CHAMP section:

A couple of years ago, my handwriting changed. It went from round and neat to tiny and illegible.

A couple of years ago, I noticed that daily actions like brushing my teeth, taking bills from my wallet, having soup or buttoning my clothes were increasingly challenging.

A couple of years ago, I noticed my right foot started dragging and sometimes I tripped for no apparent reason.

In May 2016, I saw a movement disorder specialist at NYU Langone. My primary care physician had diagnosed me with essential tremors; I know now this is a common misdiagnosis. My movement disorders specialist ran the whole battery of tests (now I can do them with my eyes closed), and then sat down. Looking me straight in the eye, he told me I had a mild case of early onset Parkinson’s disease (PD).

I remember very clearly that sunny New York afternoon. I took the ferry back home and sat on a bench facing the East River while I started processing the news. There were two thoughts in my mind: telling my parents, who live in Spain, and fighting with all my strength a chronic, degenerative and incurable condition.

Since my diagnosis, I have volunteered in several research studies, both on site and remotely, through Fox Trial Finder at the Michael J. Fox Foundation, I keep abreast of developments through associations like the National Parkinson’s Foundation (NPF), and friends and family back home have joined the Federacion Espanola de Parkinson.

I found out about the Unity Walk through NPF. I thought it would be a good idea because what’s better than walking around Central Park in April? And I created a team, Sabela and the Hotsteppers. The name was the result of a very serious and strict survey carried out among some of my friends. My initial goal was $2,500, and I raised over $11,000! It was such an accomplishment that, to this day, I have to pinch myself to know that I’m not dreaming. And it also meant meeting the inspiring and joyful May May Ali at the thank you reception for top fundraisers the night before the Walk (apparently, my mom reminded her of her ex-mother-in-law!).

Walking on that Saturday morning ended up meaning more than I had expected. The support from friends and family who showed up despite the menacing clouds is, to this day, a source of energy and strength for me. The feeling of community, of fighting together, of raising awareness was so immense that, later that day, my dad turned to me and said "even though we're an ocean away, we're not as worried anymore after what we've experienced today.” And this is why I'll walk again in 2018, so that other people, especially those who've been recently diagnosed, can feel supported, and know that they're not alone.

I use every opportunity to raise awareness about PD. I am very active in social media and I talk openly about my condition – yes, I even joke about it!

I have joined the ranks of PD fighters who are hopeful about finding a cure. As I tell my doctors, I sincerely hope they end up having to find a new specialty. I firmly believe that we are stronger together in this fight.

Sabela Avion
Team Captain, Sabela and The Hotsteppers

Con p de párkinson

In February 2021, I wrote a post for Con p de párkinson, a Spanish blog for women diagnosed with young onset Parkinson’s disease. You can read the English version here.