From Latin palliatus, to cloak, conceal

Palliative care is an approach to the care of persons living with serious illnesses that focuses on improving quality of life and reducing suffering through a whole person approach (see here to learn about neuropalliative care). It provides relief from the symptoms and stress of serious illness. The goal is to improve quality of life for both the patient and the family.

Palliative care is NOT hospice care or end-of-life care. Unfortunately, anywhere you go, anyone you ask, that’s what our mind immediately goes to (sounds familiar?). It’s such a pity, because it’d be so good and useful for anyone, and everyone…

Being Well

Remember all the times I mentioned WPC and Barcelona, and meeting some amazing people there? Enter Nancy and Kat, Kat and Nancy. This is for them.

Being Well with Chronic Illness, a guide to joy and resilience with your diagnosis, fulfills everything its title suggests.

I won’t go into details, because, seriously, you should get the book and read it and read it again, and recommend to your book groups, to your friends, colleagues, MDS, PT…

PS If you’re looking for a bookstore to support on Bookshop.org, may I recommend you The Old Tome and More?

Being Well book cover

Great expectations - just not the ones Dickens wrote about

In 2022, “you’re a great candidate” and “we could see an improvement of 80%” were music to my ears. It was a perfect tune that would get slightly distorted and dissonant over the next 12 months, until (spoiler alert) we managed to re-tune it.

I guess you can’t really blame me: I was taking about 12 pills a day, some to help others kick in, some to make others last longer. Quite the chemical cocktail, like many, many other people with Parkinson’s, or any chronic, degenerative disease, really. 

I couldn’t make plans because I didn’t know if I could keep them, I couldn’t go to the theater because I kept falling asleep (even that play with Tom Hiddleston!). I kept taking on tasks and saying yes to activism, advocacy and outreach activities until I was stretched so thin I became transparent.

So when the DBS machine started working in my direction, I was ready. I talked to other people who had gone through it, I watched videos, read posts, started following experts on twitter. I knew all about STN and GPi differences and about devices. I also knew I had to be realistic about my expectations, but it was all SO exciting that I got carried away. 

There was no honeymoon period before we turned the device on. The only evident change, and improvement, from surgery nr 1 was sleep. On average, before Sept 29, I was getting about 3 hours a night - it was so awful I stopped tracking it. Let me tell you, though, those early “mornings” were the best LEGO time.

Come mid-November, I was ready. I too wanted my “ohmygoodness” moment, when we turned the device on and you could see the difference right away. Only there was nothing. And there was nothing for months, if anything, things got worse. I couldn’t talk to people about my experience, it was too disappointing. There was that one particularly bad time when A asked me if I regretted having done it, and I had to say “yes”. Where was my 80%? 

I just kept going as best as I could. I didn’t want to be around people, particularly those who knew I had had the surgery. I dreaded the arrival of July and WPC: meeting in person all those amazing people, all those friends I had made, but not feeling how I thought I was supposed to feel. And it was disheartening in many ways, and uplifting in others. And because I’m me, I chose the uplifting, a little reluctantly at first. 

Now, mid-November again, after the botox injections in my eyelids (not for THAT reason!), the new meds I can only get in the mail, and all the “programming” visits, I’m typing again, and I’m back taking on advocacy and activism, just less intensely. I had my expectations knocked down a lot of notches, and it was all dark and uncomfortable. Yet, with a little bit of help from my friends (and zoloft), when A asked me if I regretted having done it, I had to say “not anymore”.

Write a haiku, she said

I’ve just started a Wellness Word Workshop, organized by Parkinson’s Foundation Western PA, with the always calm, always cool Rebecca Gifford. After totally missing the first class, during the second one we had to write poetry, first a haiku, then a free form poem.

I was in the office, where I keep my unicorn.

Conclusion nr 1: counting syllablesin English is hard.

Conclusion nr 2: I can write poetry!

Unicorn with a crown

Pink sequin on the wall

Flying unicorn with a crown

Watching us dream

Dancing and Parkinson’s

This is the English version of the post published on Con P de Párkinson. The original Spanish can be found here.

Dance for PD® is a project envisioned by Olie Westheimer, founder and executive director of Brooklyn Parkinson Group (BPG). In 2001, she contacted the Mark Morris Dance Group (MMDG), an internationally famous modern dance company, and brought to them the idea of a creative and rigorous dance class for the members of her group. Because of her own dancing experience, she also knew that dancers train their bodies and minds to perform difficult movements with confidence, strength and grace.

Two of Mark Morris Dance Group’s dancers, John Heginbotham and David Leventhal, joined by a musician, created free monthly classes (as they continue to be) for groups of six people. In 2004, MMDG started to offer Dance for PD’s classes in cities where the company toured. Soon after, they developed an education programme for dance teachers. Dance for PD has established itself in Mexico, Canada, Australia, England, Scotland, Italy, Germany, Holland, Israel, and India. Almost 50 weekly! participants come to these classes in New York.

Dance for PD’s focus has been loyal to Olie’s vision and fundamental ideas: the knowledge about balance, sequencing, rhythm and aesthetic conscience of professional dancers, who are movement experts, is useful for people with Parkinson’s. Classes are open to everyone, even families, friends and caregivers, and they are about art, technique and having fun while dancing, not about Parkinson’s; and they’re not called therapy. In short, classes allow participants to explore the wide range of physical and creative possibilities that are still open to them.

 At the end of 2021, Con P de Párkinson met Gregory Youdan, one of Dance for PD’s teachers. Gregory, of Dominican roots, teaches in Spanish. As a dancer, he has toured at national and international levels for more than 13 years. He also has a master’s degree in motor learning and control and another one in applied statistics, both certified by the Teachers College at Columbia University. He researches movement disorders, specifically Huntington disease, but also Parkinson’s, and he works in the Neurogen project in the Dominican Republic with Dr Cici Feliz, who, coincidentally, is also a great friend of us. We talked about this and then some in the interview we did with him in Onda PK. Don’t miss it!

And, to top it all, Gregory also taught at one of the workshops during the meetings of women and Parkinson’s in March 2022.

Translation into English by Pablo Martínez Cuadrado (Universidad Complutense, Madrid)

 

We are activists (a manifesto)

This is the English version of the post published on Con P de Párkinson. The original Spanish can be found here.

In 2017 I read an article in Eldiario.es written by Cristina Neill about the traits of an activist. This year, on April 11, World Parkinson's Day, I reflected on what it means to be an activist from my perspective.

It has been 9 years and 7 months since a neurologist told me I had Parkinson’s —you already know that part of my story. Today I look back and it seems that the question I asked myself —where are the women with Parkinson's?— prompted me to create Con P de Párkinson (P as in Parkinson’s), to look for women like me, women who had a squatter tenant in their body.

If I look back, I see that I have become an activist in the fight against Parkinson's disease. In doing so, I have met like-minded people with whom I have woven a network of giving and receiving, of sharing.

No one knows Parkinson's better than us, the people who live with this disease. Each of us has a unique experience to tell and share. There is a risk of believing in our uniqueness, of believing that we are special. So, it is time to ask ourselves: what am I looking for when I say I want to be a Parkinson's activist?

I started taking part in this Parkinson's activism because I believe in people and the transformative power we have. In order to make this activism positive we need:

TRUST: an activist is a person who trusts that things can be changed, trusts people and believes in teamwork.

CRITICAL THINKING: an activist reviews and analyzes their message, always trying to give their best. The goal is not to control, but knowing that continuous improvement will yield efficient results.

INNOVATION AND CREATIVITY: an activist is able to look at the world from different perspectives because their essence is being proactive and generating ideas.

COMMUNITY SENSE: an activist does not act alone, but rather understands solidarity as something that goes beyond the group or individual interest. The activist knows that they cannot reach everything and that is why working as a community is fundamental.

SOLIDARITY: an activist joins forces with others for the common good and considers that there are no problems that are exclusively individual.               

SOCIAL AWARENESS: an activist does not act in a vacuum, they understand solidarity as something that goes beyond oneself. An activist knows that they cannot do everything and that, for this reason, having a tribe is fundamental. An activist is always thinking about  “we”.

COMMITMENT: The activist must have the ability to get involved, either actively or only in their leisure time, but it is an intrinsic commitment that comes from the heart, and not an obligation.

PASSION: the activist is passionate about being an activist and strives to transmit the message and to achieve change. They savor the achievements, but also the way there.

LAUGHTER: the activist knows that it is not easy to laugh when things do not go their way. But they also know that they should laugh because it already is hard enough to live with what we have without being happy with what we do.

We can achieve change if we fight together, if we put our own thoughts at the service of others and the common interest above individual interests. Today, I can say it is an honor for me to share my passion with my team of friends.

Con P de Párkinson

 

Translation into English by María Santamaría Díaz (Universidad Complutense, Madrid)

Guide Beauty, makeup designed for everyone!

makeup tools

My Guide Beauty supplies. Bring it on!

This is the English version of the post published on Con P de Párkinson. The original Spanish can be found here.

I’ve never been good with eye makeup. Actually, that’s too generous: I’m awful at using eyeliners, for example. I’m fine with mascara, but eyeliners, forget about it. And with Parkinson’s disease, I’d say I’m a lost cause. However, Terri Bryant, founder of Guide Beauty, was adamant: “No, you’re not!”

 We interviewed Terri on Onda PK a couple of weeks ago, and the show is airing right when we’re kicking-off the month of April, Parkinson’s awareness month. We wanted to know everything: how and why she became a makeup artist, what happened after her PD diagnosis and how Guide Beauty came to be. The following is a summary of that conversation, which you can watch in English *or* Spanish on our YouTube channel.

 When Terri was growing up, her mom would religiously go every season to the Chanel makeup counter four times a year, to find out about the latest trends in makeup. It was a moment for her: she was a busy mom, ran a business and took care of her family, but those days were for her.

 Terri spent years playing with makeup, honing her skills. She always felt uncomfortable talking to people, but she realized that makeup helped her connect with the person sitting in her chair. She started working at that same makeup counter when she was pursuing a degree in special education. After her first training with Chanel, she knew she wanted to become a makeup artist.

 Guide Beauty was born the day Terri got her diagnosis. It was an empowering moment, realizing that she knew the mechanics of makeup artistry, and now she understood also the disconnect that the people sitting in her chair would mention. She took her makeup kit and her husband’s toolbox and started working on her own prototypes. The lightbulb moment was: Wait, this makes it easier for me, but it’d also make it easier for anyone who says they can’t put on makeup!

 Later, Terri started working with a design team, and they taught her about the concept of universal design. She hopes to achieve a prospective shift with Guide Beauty, widening the lens of inclusion. The idea is to include and represent everybody in products and design. In doing so, the products become better for everybody, brushing off the need to design for us AND for them.

 Before her diagnosis, Terri was experiencing a shift but she didn’t know why. Once she knew, she found an opportunity to figure out how to proceed. If she couldn’t be the makeup artist she had been before, who did she want to be? She knew some beauty could come out of it, and she went to find out. Now, being able to recognize life experiences outside of her own, she knows that Guide Beauty can be the tool to bring more people to the table and help with those designs.

 Terri is convinced about one thing: engaging with other people and connecting with a community makes us all stronger as we go through life. She’s looking forward to continuing with the process at Guide Beauty, to continue applying the concept of universal design to makeup, and, in short, creating something better for the widest group possible.

The doctor will see you now

This is the English version of the post published on Con P de Párkinson. The original Spanish can be found here.

We spoke with Dr. Álvaro Sánchez-Ferro, neurologist and researcher at the Hospital 12 de Octubre (Madrid) for one of our Onda PK programs. He specialized in neurology at the same hospital and was trained specifically in Parkinson's disease at the Carlos III Research Institute. He has also received training in neurodegenerative diseases in Tübingen (Germany) and Harvard University. In addition, he received a grant from a program of the region of Madrid and the Massachusetts Institute of Technology (Cambridge, USA) to take part in a program on biomedical innovation, where he developed new methods for the objective quantification of the signs of Parkinson's disease.

In the program, Dr. Sanchez-Ferro and Sabela role-played a visit to the neurologist to see how we can prepare ourselves to get the most out of it. They then chatted for a while with Jessica Bravo and Paqui Ruiz and commented on the experience. Here are the suggestions they talked about to have a useful visit with your doctor.

BEFORE

You should prepare for the visit, for example, a journal where you take notes about the medication, to see if there are any changes, and the side effects, if any, appear or worsen. It is also important to record your mood - don't forget non-motor symptoms.

It is also helpful to prepare a list of questions you want to ask, in order of importance.

DURING

If possible, don’t go to see your doctor by yourself; it can help your doctor to have a better, or more complete, understanding of your case.

It is important to be frank and speak clearly. In our case, the relationship with the neurologist can last many years and it is essential that we can communicate well and that there is trust between us.

Explain in your own words how you feel, what has happened to you so far, if there have been any changes in symptoms, both motor and non-motor, or in the effects of medication. You can make a video of something specific that you want to show the specialist but don't know how to explain.

When reviewing medication, indicate if you take any other medications prescribed by other specialists, or if you take multivitamins or any over-the-counter medications. There can be interactions which, in some cases, could potentially be dangerous.

If there are any changes in medication, make sure the instructions are clear, what it is for, when to take it and how much, what the possible side effects are and what to do if they appear.

Ask questions, repeat back what the neurologist has said in your own words, make sure you have understood everything well.

Be sure to ask who to go to if questions arise after the visit.

Never leave the doctor’s office without knowing when your next appointment will be.

Sharing life

This is the English version of the post published on Con P de Párkinson. The original Spanish can be found here.

In my early years in New York, I ended up dining more than once at a Mexican restaurant near the office. It was a great place to meet up, the food was excellent and the margaritas, just amazing. In 2011, halfway through my stay in Europe, I got some terrible news: it was closing. They told me it was the same old story: an absurdly high increase of the rental price. What I did not know was that there was more to that story.

In September 2021, Parkinson's Life, a website of the European Parkinson's Disease Association (EPDA), published an article and a podcast interviewing Zarela Martínez, a Mexican chef living with Parkinson’s. I started reading the article and learned that she had had her own restaurant in New York, and then I thought “wait a minute! Zarela… Zarela… Zarela was the name of the restaurant we used to go to!”.

Thanks to our colleague Richelle Flanagan of the Women's Parkinson's Project, who had interviewed her, I got in touch with Zarela. I told her about our mission here in Con P de Párkinson and I suggested recording a program on Onda PK. It turns out that Zarela is not only a chef: she has written recipe books, hosted a TV show, gives talks on how to live well with Parkinson's and even has her own podcast with one of her sons, also a chef. She was delighted with the idea and you can listen to, and watch, the result on Onda PK (in Spanish).

We talked about a thousand things. Zarela was born in Agua Prieta (Mexico) in the state of Sonora. She spent the first years of her life in a family ranch and started writing her mom’s recipes from a very young age as she watched her mother cook. Her book Food from my Heart is the result of compiling all those recipes, and many more, along with stories about her life.

Another of Zarela's projects is to tell the world that it is possible to live well with Parkinson's, even if we have to make adjustments. She explained her kitchen “building blocks” project, that is, having certain things ready-made and close by that will make our lives easier. One of the examples she gave was pico de gallo, which calls for fresh tomatoes, onion, cilantro, chilis and garlic. It can be stored in the fridge, we can throw in some eggs and boom, we have some Mexican-style eggs, or with zucchini, corn, and cheese. In the Recetas section of Con P de Párkinson you will find Zarela’s recipes so you can give them a try and add a little spark to your everyday meals.

We hope you will try some of the recipes and, if you do, tell us about it. Do you use any tricks in the kitchen to make your life easier?

Notes:

If you speak Spanish, check out this episode of Onda PK podcast to understand the title of this blogpost.

Also, the book has not been translated into Spanish yet so, to any publishing house reading this post, let us know if you are interested in doing so!

Translation into English by Isabel Sáez Jiménez (Universidad Complutense de Madrid)

Why I’m not “walking” this year

After some serious thinking, I’ve decided to withdraw Sabela and The Hotsteppers from the Parkinson’s Unity Walk. As you probably know, the funds raised support Parkinson’s disease research, through grants funded by the APDA, the Parkinson’s Foundation, the Michael J. Fox Foundation and the Parkinson Alliance. Unfortunately, PD research moves very slowly, painfully at times.

As a person living with Parkinson’s disease (PwP), I can’t afford the luxury of time; I want to see benefits right away. I want to help at the grassroots level, be it in Spain, the US or anywhere else in the world. I want better quality of life for myself and hundreds of thousands of fellow PwPs today. There are those who need, for example, a way of following free exercise classes online but don’t have a device to do so. Others have no access to mental health support, either because their insurance doesn’t cover it, or barely, or simply because they don’t have insurance. Yet others need speech therapy, physical therapy, occupational therapy, but these are out of reach because of costs. And, sometimes, the issue is getting to the doctor or to therapy because of transportation issues.

At the same time, I’ve been struggling with an ethical, and moral, dilemma. I’ve read the financial reports of most major organizations, and, often, the salaries at the top levels are outrageously high. I can’t, in good conscience, support organizations where the top executives make almost one million dollars, half a million dollars… Yes, I’m aware the revenues of those organizations are high, very high. Yes, I know that research takes a very long time: I’ve met enough researchers over these past 5 years to know that they work tirelessly, and my respect and admiration towards them are unwavering. However, as I said earlier, I want to see progress here and now.

I’m not questioning those organizations or their mission. I know great things have been achieved thanks to their support. I’ll continue to participate in research, and to encourage others to do so. However, I’ll no longer ask you to support them financially. I’d rather focus on small, quick-impact projects such as the ones I mentioned earlier: support for therapies other than drugs, and mental health.

Over the past 5 years, your support and your encouragement have been uplifting. You’ve walked with me in more ways and circumstances than Central Park in April: you’ve understood my canceling plans, you’ve filled out forms for me, you’ve come with me to doctor’s appointments, you’ve proofread my English and Spanish blog posts and articles, you’ve sent me messages, postcards, videos and drawings, you contributed with prizes for the silent auction last year, you went to work on a day off so that we could eat after walking in Central Park, you asked colleagues for their support to the cause, you’ve helped me with work assignments, you’ve taken over PPT presentations, you’ve understood I needed to rest when traveling around the world, you’ve said “I’m here” with words and with actions… I could go on and on.

And how am I going to do this? Over time, if you’re interested, I’ll share with you different opportunities to help and show your support. Here are the first three:

-        Support Parkinson’s Africa, a patient advocacy organization created by Omotola Thomas, dedicated to supporting and empowering Africans impacted by PD (patients, family, friends, relatives, carers, etc.) so that they have access to the informational, educational, support and healthcare resources needed to live empowered lives.

-        Support people with Parkinson's & junior investigators to attend the 6th World Parkinson Congress (WPC 2023) in Barcelona, Spain. It’s the only event gathering patients, care partners and scientists and healthcare providers. Participants bring back to their communities what they learn at the WPC, and the exchange of best practices and lessons learned is a true breeding ground for innovation and ideas.

-        Support Con P de Párkinson, an association of Spanish-speaking women living with Parkinson’s disease. Our goal is to raise awareness about this forgotten group, encourage research with a gender perspective and improve quality of life, all by sharing our stories in our blog and on our weekly radio show, Onda PK.

 In gratitude, and solidarity,

Sabela

Invisible diseases, spoons and ableism

This is the English version of the post published on Con P de Párkinson. The original Spanish can be found here.

How many times have you thought "if you knew about my condition, you wouldn't look at me like that or say that"? That's the thing about Parkinson's disease (PD), that, many times, you don't see it. It turns out that we are not the only ones, there is a group of diseases that are described as invisible diseases, ranging from depression or anxiety to rheumatoid arthritis or fibromyalgia, diabetes, lupus or Crohn's disease. In many cases, diagnosis is complicated; a blood test or X-ray are not enough. In fact, often it follows a process of elimination, like in the tv show House, MD, remember?

Generally, an invisible disease is one that interferes with our daily activities, but to which people and strangers react by saying: "you look fine to me" or "no one would say you are sick". Sound familiar?

How can we make what is happening to us a little more understandable? Apart from sharing our personal stories, a good way to explain it is the spoon theory. It was developed by Christine Miserandino in 2003, when she wanted to explain to a friend what it's like to live with lupus. She gave her friend a bunch of spoons and told her to think about daily tasks: getting up, showering, getting dressed, going to work, cooking, eating, coming home from work, having coffee with a friend, washing the dishes... Then she told her to imagine that each activity would cost a spoon. The first thing her friend replied was that she needed more spoons. Christine told her she only had those, to think carefully about how to use them. That's life when you have an invisible illness, there are days when you have so few spoons that you can barely do anything. 

When you have an invisible illness, you are more aware of another enemy, ableism. The word "ableism" is a neologism that refers to discrimination against a person with a disability. The fact that it is a neologism does not mean that it is something new, on the contrary, it has been with us for a long time and many say it’s not real.

An ableist attitude is one that assumes that a person with a disability cannot fend for him or herself, cannot make decisions, or cannot actively participate in society. Words can also be ableist, for example, if we say that someone "looks bipolar" because they have mood swings, or if we react to seeing a young person by saying "what a shame, so young and so sick". 

It is also ableist to hold a meeting in a room that is only accessible by stairs, to use too many animations in a PowerPoint presentation, or not to describe the images used in the slides. The town that plans an urban plan without taking into account the architectural barriers that may arise is an ableist. The driver who leaves the car at the bus stop because "it's only for a moment" or who sees a car parked in a space for people with disabilities and doubts the right of the person who is using it, is an ableist.

Many times we are ableist without realizing it. The important thing is to be aware of it and do everything possible to avoid it.

Parkinson’s disease and travelling

map magnifying glass camera notebook pencil

This is the English version of the post published on Con P de Párkinson. The original Spanish can be found here.

"Are you nervous?" is a very common question when we travel: from the check-in desk to security personnel to other passengers, we've all heard it more than once. And more than twice. One of the recommendations we get when we have Parkinson's disease (PD) is to avoid unnecessary stress. And, of course, when we talk about traveling, we run into a problem: how can I travel and avoid stress at the same time? Here are some ideas and tips on how to do it.

Medication: always carry it with you. Ask for note from your health-care provider (HCP) as proof. It is also a good idea to carry extra medication, just in case.

If you are traveling abroad, ask your HCP to indicate which is the generic equivalent or the most important ingredient, so that it is easier to identify it.

If you are going to change time zones, continue to take your medications according to the prescribed schedule: the body does not know whether it is 9 a.m. or 3 p.m., it only knows that it needs dopamine!

Assistance: whether you are traveling by plane or train, alone or not, do not hesitate to ask for assistance. First, sometimes you have to walk long distances at airports, or you have to wait in endless lines. Second, by getting on the plane or train earlier, you will have more time to settle in.

- It never hurts to give a tip to the person who helps you, especially abroad (remember that there are countries where it is common practice). They will probably refuse it, but insist. Some people accompany it with a "coffee is on me today".

Water and food: although you cannot bring liquids through security, you can bring an empty bottle, which you can refill later. An apple, some dried fruit or a cereal bar are good ideas for snacks, too.

Medical alert: some people suggest wearing a medical alert bracelet or badge; in the case of DBS this is more than a suggestion. Other options, especially when traveling abroad, are the EPDA's PD Doc, the Parkinson's Foundation's medication form or their "medical alert" card.

Try to rest whenever possible and be mindful of your pace and always listen to your body.

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.

“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.

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