MAKING MEANING WITH MS

Featured in Healing MS, Winter 2018/19

Team Tisch MS (TTMS), founded in 2015, is a team of runners, bikers, swimmers, and triathletes, who compete in races and other events to raise money for the Tisch MS Research Center of New York. These funds help advance research to find the cause of and cure for multiple sclerosis. Joao Goncalves, TTMS member and long-time patient of Dr. Sadiq at the IMSMP, took on and successfully completed the 2018 TCS New York City Marathon on November 4th. He traveled all the way from Spain to run alongside fellow TTMS members in this 26.2-mile race. Here, he shares his uplifting story in an interview…

Congratulations on completing the 2018 TCS New York City Marathon! As a person with MS, there’s no doubt that you are an inspiration. What made you decide to sign up for a marathon in the first place? Thank you so much! The thought first landed in my mind a couple years ago, inspired by other Team Tisch MS runners. I got a lot of inspiration from Mireya Montalvan-Panzer, a 2016 Team Tisch MS runner, who has been extremely supportive of my efforts.

Why did you choose to run for Team Tisch MS?

As an MS patient, I could not think of a more noble purpose than to raise funds to support research done at Tisch MSRCNY. A Future Without MS really resonates with me. Fundraising for Tisch MSRCNY was very engaging and I also connected it with an important milestone in my journey with multiple sclerosis, the 20th anniversary of my diagnosis. I was also inspired by people who fought very hard against MS (and other life-threatening conditions), some of them, unfortunately, who didn’t win despite their brave efforts. Paying a tribute to their heroic fight also became part of the purpose.

Not only did you run 26.2 miles, but you flew all the way from Spain to do so! What made you decide to run specifically in New York?

I wanted to be part of Team Tisch MS and run with the group in NYC. For me, New York has a very special place in my heart. It represents hope and resilience. I visited Dr. Sadiq at the IMSMP for the first time in 2008 after my worst MS relapse since being diagnosed in 1998. Both my wife Inés and I were very worried and anxious. It seemed like MS was finally starting to win. After a few visits I felt I was regaining control with the help of Dr. Sadiq, and finally, in 2012, I started feeling much better and relapsefree. For us, this is a strong motive to celebrate, and I could not think of a better place to do that than NYC! Confirmation came from the cheering on the streets from the great people of New York and the thousands of committed volunteers that helped us during the race. It really made our celebration a unique experience.

Tell us about your training regimen and how MS impacted your training.

I am optimistic. Yet, when I decided to engage in this challenge, I assumed I would face some “bumps” during my preparation or even on race day. Indeed, I faced some episodes of fatigue, especially during the hotter days of Madrid’s summer. My response was to allow myself to deviate from the training plan and build some extra rest. Obviously, this brought some pressure on the scaling up of miles and eventually, I became somewhat concerned. Fortunately, I had enough support from my cheerful wife, family, and friends, including Mireya, that helped me stay strong and focus on the progress rather than on the speed of the progress. I’m sure many non-MS patients also go through similar concerns and mood changes when training for a marathon.

It was so nice to have you and your family with us at the TTMS Post-Marathon party. What did it mean to have them join you on this incredible journey and end the day surrounded by family dancing at the party?

Thank you, we really appreciated the invitation and the warm welcome. I was extremely happy to be able to celebrate this incredible journey with my wife and children. My wife Inés is the most generous person you will ever meet and she has been dealing with my MS for 14 years. She suffered with me, assisted me when I most needed it, cheered my efforts and recoveries, and finally, she supported me when I had the crazy idea of running a marathon. My two children Pedro (11) and Helena (9) were also exposed to my MS, although for a long time they didn’t quite understand why daddy sometimes would not play outside with them. Celebrating together was as important as finishing the marathon, it really meant a lot to all of us.

You ran a really successful fundraising campaign. Can you speak about your experience soliciting for a cause so close to home?

A few years ago, Dr. Sadiq told me that his mission was to find a cure and treatment to reverse disability from MS, and together with his team he would accomplish it. He told me this in a very inspiring way and if you know Dr. Sadiq, you know what I mean. Fundraising was harder than I anticipated, but I would always remember Dr. Sadiq’s words and that kept me telling my story and engaging people in my network. Besides sharing my story, I started using other examples. I found out that some people in my network had a close tie to MS mainly through a family member. Contributors also appreciated my training efforts for the marathon, so clearly connecting a personal commitment to the fundraising campaign helped me be more effective.

What words of advice would you give to anyone with MS who wants to train for an endurance race like the TCS New York City Marathon?

I am happy to share a few things that worked well for me. First, be sure about the purpose. I wanted to raise funds for MS research, celebrate 20 years fighting with MS, and pay tribute to people that fought MS very hard. Having a meaningful purpose helped me keep the energy levels high during the long preparation. Then I chose a challenging, yet realistic goal. To make sure it was realistic I consulted with my doctor to check for any concerns with my overall health condition. My family and friends were the supportive networks that I involved since the beginning. I shared my purpose, my goal and why it was important to me. They kept cheering me on, training with me at times and holding me accountable for progress. The actual training program is also very important. There’s lots of literature available but I strongly recommend finding professional support or a running club. I feel very fortunate to have finished a marathon on my first attempt, but I also know that something could have happened on race day, so from the beginning, I just thought that the true failure was not to try it at all.