Not as Simple as “Just Do It”

I was never a sporty girl; I didn’t learn how to catch a ball until age 12. At 15, I finally found a sport I actually liked: swimming. (It helped that I met and fell in love with my husband in a swim class in 2009). I’ve never been great at swimming, but I really enjoy it. Life Tip #1: Find an activity you enjoy; it’s a great way to motivate yourself.

During 2019, my husband and I were training together for an open-water swim. He had done a couple of them before, and I was preparing for my first one—a 750-meter race called “Punta Leona Open Waters.” After a night training session in July, I realized I couldn’t extend my right index finger. The public pool we were using was really cold, and I figured that was it. I never could have imagined what was coming.

As training went on, I noticed that my body wasn’t the same. My kicking was slower, breathing became more difficult, and putting on my swimsuit, fins, and other gear was harder. On race day, I needed a lot of help. My husband had to assist me in getting into the water because I had lost my ability to balance. Someone in a kayak stayed by my side the entire time, cheering me on. When it was time to get out, my brother and husband had to lift me and walk with me to the finish line. Life Tip #2: Always have someone who cheers you on.

Then COVID hit and all the pools closed. 2020 was a hard year; I was depressed and didn’t have the energy to stay active. I lost a lot of strength in my limbs.

Getting back into exercise in 2021 was a huge mental challenge. My trainer and physical therapist, Francisco, focused a lot on building my mental strength to achieve physical results. He taught me Life Tip #3: Trust yourself and replace the phrase “I can’t” with “I’ll try my best.”

Someone once told me, “You’re so brave.” I cried because I didn’t want to be brave—I was just dealing with what life put in front of me. Sometimes I felt so anxious that I avoided the gym because I didn’t want to feel weak. But other days, I felt powerful moving my body and managing things I never thought possible, like climbing stairs without assistance. Life Tip #4: It is always better to focus on what you are able to do instead of your limitations.

Fran encouraged me to return to the pool, but I was terrified—I hated that feeling of not being able to do something. I didn’t want to feel vulnerable. It took me a year to find the courage.

Everything about swimming was hard. I needed someone to help me put on my swimsuit, tie my hair, and pack my clothes. I needed someone to drive me there. I needed a pool with easy access because I couldn’t use a ladder to get in and out. My sister and my mother-in-law offered to help. Life Tip #5: Having a support team is incredibly helpful.

On my first day, I was so nervous that I couldn’t even say my name correctly. That’s when I met María José, the most amazing aquatic physical therapist. She held my hands, got into the pool with me, and we began with some simple exercises, like walking in the water. I am basically learning how to swim again. My arms have very limited mobility, so most of the time I use a kickboard. Other times, I use hand paddles to stabilize my wrists. Noodles help provide stability for my neck and core. I wear a mask to make breathing easier and safer. The water temperature needs to be warm for my muscles to relax. 

Even though swimming is such a different experience now, facing that fear was the best thing for my health. The pool is my happy place. I love the way my body feels in the water, free from the usual barriers to movement. I truly believe water has some special effect on helping slowing my ALS. 

When my diagnosis was confirmed a year ago, I added breathing exercises, speech therapy, and occupational therapy to my routine. Doing my entire routine takes around two hours daily.

Having a community like Her ALS Story has made a huge difference for me. Seeing how other women with the same condition take time for physical activity, and sharing their fears, victories, and challenges inspires me so much. Our “Exercise Buddies” group has helped me become much more consistent with my workout routine, and my ALS clinical measurements show that my breathing and limb strength have improved. I’m so happy to have found a place where I belong and don’t feel alone to keep exercising while fighting such a difficult disease. Life Tip #6: Find a group of friends who challenge you and encourage you to stay strong.

I’ve learned to appreciate the small victories: walking without assistance through a beautiful place, snorkeling with my husband, climbing up to the second floor of a catamaran in Argentina, going out with my friends and eating on my own, blowing out my birthday candles, hugging my family, and cherishing every little detail in daily life.

These victories are helping me to change my perspective. Life Tip #7: Exercise for my own good, because I want to—not because I must.