Dancing My Als Off

After being diagnosed with Lou Gherig’s Disease, world-renowned Pilates pioneer Mari Winsor refuses to quit being positive or practicing Pilates. Here, she demonstrates the moves that have kept her on her toes.

By Mari Winsor • Edited by Amanda Altman • Modeled with Saul Choza

I can still hear Romana’s words echo in the back of my head: “Get them moving! Don’t stop for details! Just MOVE!”

I used to watch her [Kryzanowska] work with a variety of clients with limited range of motion due to age or some ailment. The message was always the same: Keep them moving. As my ability to move is slowly declining due to ALS (Lou Gehrig’s disease), I’m most interested in keeping my body as flexible and strong as possible.

I found it interesting that when I was diagnosed back in May 2014, my doctors advised me to do Pilates. I was shocked the ALS clinic didn’t have any Pilates equipment or trainers available; it was then that I decided I had to change that. So I’m starting here with a series of movements that have helped me, an ALS patient. My long-term goal is to make Pilates available for anyone with ALS or any other neuromuscular disease/disorder.

If you’ve been active throughout your life and suddenly have restrictions, your body still retains the memory of the movement. Teachers, asking your client what activities they have done in their life will help you tremendously in learning how to guide the body to its full range of motion and reduce stiffness. The key to achieving this is an understanding of your client’s rhythm and breath. There is a fine line between assisting your client and doing the work for them.

This simple routine can be performed every day. We don’t want those joints to stiffen up! For MS patients, we don’t want to overheat the body because MS is a disease of inflammation. For ALS, as the muscles atrophy, our tendency is to want to work out and strengthen the muscles that are weakening. But the disease does not attack the muscle—it kills the nerves. Therefore, it is more important to work on balance, control, flexibility and circulation. I was misdiagnosed at first and focused on strengthening the muscle; that worked against me. If you try to work an atrophied muscle, it burdens the nerves that are still alive, and as a result, my symptoms accelerated.

As with all neuromuscular diseases, if you or your client becomes tired, it’s time to stop. I remember Romana working out clients for 20 minutes, and that was fine; you do not want to fatigue the body. If you take on the responsibility of working with someone with a neuromuscular disorder, you have to be mindful and sensitive to their every move, as they may not be. However long or short the session may be, you are empowering your client and fulfilling their needs.

I chose to demonstrate on the Cadillac, because it’s easy to get on and off of it. I also incorporated the Spine Corrector; it supports the spine and helps keep the chest and back open. My trainer for this routine is Saul Choza; he’s gentle, extremely knowledgeable of the body and patient, not to mention easy on the eyes. It’s helpful when a teacher is kind and patient, because let’s face it, what your ailing client deals with on a daily basis is overwhelming and sometimes very depressing. Staying positive is paramount.

I didn’t use any leg springs here, however, they can be implemented either with your client on their back or on their side for side leg springs. When using the springs, make sure they aren’t too heavy. I usually swap the leg springs for arm springs, or move them to the arm springs hook. If that is still too much, just go for a good ole resistance band.

The benefits of this routine are many: loosening tight joints to make movement easier; improving posture and core awareness; and achieving better balance. But the one I feel overshadows all of these is the feeling of joy throughout the session. It makes me want to dance my ALS off. PS


MariWinsor_teaserSetting: n/a
Prop: none
Purpose: strengthens the powerhouse; enhances spine articulation
Setup: Lie flat on the mat, with the teacher standing near your feet.

1. Bring your knees into your chest, then straighten your legs to a 45 degree angle, with the teacher supporting your legs and feet with their own body.

2. Reach your arms toward the ceiling, then continue reaching toward the teacher. Inhale, as the teacher takes your hands or wrists, gently pulling you up into a Teaser position, making sure you roll through the spine.

3. Hold the position, and feel your powerhouse. To roll down, exhale as you pull away from the teacher.

Tips: The assisted Teaser is very much like a Roll-Up—always remember the C curvature when you round your back. Make sure your powerhouse is engaged. If your back is uncomfortable at any time, stop the exercise.

Modification: To help better understand articulation of the spine, substitute this exercise with an assisted Roll-Up or Roll-Down on a wall.


MariWinsor_tricepsSetting: light arm springs or Arm/Baby Chair springs attached to one end
Prop: small ball
Purpose: builds strength in the triceps
Setup: Lie on the mat, with a small ball between your bent knees, feet firmly pressing into the mat to activate your hamstrings and glutes. Keep your shoulders down and ribs in. With your hands in the springs, position your elbows by your sides, fingertips reaching toward the ceiling, making a right angle with your arms.

1. Keeping your elbows “glued” to your sides, exhale, pressing your arms down to the mat, reaching your fingertips longer to engage your triceps while activating your inner thighs and keeping your tailbone down. Do 8–10 reps.

Tip: Assist the client as needed.

One-Arm Press Down

MariWinsor_OneArmPressSetting: push-through bar with light arm spring or Arm/Baby Chair springs
Prop: none
Purpose: improves lung capacity; strengthen the weaker side
Setup: Facing sideways to the bar, get on your knees, pressing your hips forward and squeezing your buttocks, with your shoulders down. You should be able to create a straight line from your knees to your shoulders. Your knees can be hip-width apart or together.

1. Extend one arm to your side, placing your fingertips on the bar.

2. Inhale and without moving your shoulders, use your powerhouse to move the bar at least 2 inches down, activating your lat muscles; hold for 3 counts. Exhale, bringing the bar back up. Do 5 reps on both sides.

Tip: You want your client to feel that the arm is moving from the back and not the shoulder.

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