by Marg Bartosek, GCFP
At least one million people in the U.S. live with Parkinson’s disease. One or more students in your Awareness Through Movement® classes may have this progressive neurodegenerative disease, and have not yet been diagnosed. Often, Parkinson’s disease (PD) is not easy to diagnose. In fact by the time of official diagnosis, the person has usually had the disease for five to six years and has already lost 50-60% of the dopamine receptors in their brain. In addition to enhancing motivation and pleasure, dopamine improves communication between neurons to facilitate movement. It also strengthens connections to enhance plasticity and learning.
If you have not worked with People with Parkinson’s (PwP) previously, this article will give you a context and background for doing so. It will also provide suggestions to make your ATM® class a PD-friendly environment, and lesson themes helpful to People with Parkinson’s.
A few statistics to set the stage:
- About 60,000 people in the U.S. each year receive a life-changing diagnosis of Parkinson’s disease, and that number is expected to double over the next 20 years.
- 85% of PwP are over 65 years old, and men outnumber women 3:2. The number of men and women diagnosed increases with age.
- The usual age of onset is between 55 and 65 years of age, though there is an early-onset form of PD. Michael J. Fox is perhaps the most well known of this type.
- The prevalence of PD varies by region. We don’t know why. The causes of PD are not fully understood and are probably multiple. To see the numbers for your state (which are probably under-reported), click here and scroll down to the map. [https://www.parkinson.org/Understanding-Parkinsons/Statistics]
Most people are aware of the major movement symptoms of Parkinson’s:
- Stiffness or rigidity, often in the torso or limbs, with resulting limited range of movement and decreased differentiation. Often, one observes a marked difference between the two sides of the body, for example disparate arm swings, rib movement, and stride length.
- Tremor of the extremities, face, or jaw may be present.
- Slower, smaller movements (bradykinesis), walking with short, shuffling steps (festination).
- Freezing, the inability to start moving, often follows a transition like standing up, coming to a doorway, or a change in walking surface. Sometimes walking or turning in narrow or crowded spaces triggers freezing. An estimated 30-67% of PwP experience freezing, which tends to increase as the disease progresses.
- Stooped posture and problems with balance and coordination. The flexors seem to overpower the extensors and, when combined with the previously mentioned movement challenges, leads to more frequent falls.
Parkinson’s, however, is much more than a movement disorder; there are cognitive, emotional, communication, gastro-intestinal, visual challenges, and more. Some of these common non-motor issues can affect participation in ATM classes. For instance, 40-50% of those living with PD experience depression; 65-70% feel some anxiety. Cognitive decline may mean that the person needs increased processing time, or requires simpler instructions. In addition, most PwP take medication periodically throughout the day. As the effectiveness of the previous dose diminishes, they may say they are “off,” and this may be evident in their movements in ATM class. On occasion, a student with PD may need to get to the restroom in the middle of class. In most cases, they also need additional transition time to tend to shoes, mats, getting up and down, and changing position.
To best teach and support a student living with Parkinson’s, Guild Certified Feldenkrais Practitioners(CM) must recognize that each and every individual with this disease has their own particular constellation of issues, so learning about this person’s experience is critical.
How the Feldenkrais Method® is Helpful
We know that slow movements, done with attention, maximize neuroplasticity and facilitate neuronal connection and learning. Often PwP experience challenges with automatic, less conscious movements, such as walking. When we bring awareness to their movement and introduce other options, the student can activate parts of the brain less affected by PD. In addition, their perception of their movements is often inaccurate; a smaller movement may be perceived as reasonably sized (and this goes for their speaking volume too). Learning how optimal movement “feels,” and how to pay attention and modify their actions, can give PwP additional strategies and ideas to approach movement challenges in their daily lives.Novelty, inherent in ATM lessons, also stimulates dopamine production.
How to Make Your ATM Class a More PD-Friendly Environment
A Parkinson’s disease-specific ATM (or ATM-influenced) class, open only to students living with PD, allows you to address their various issues more directly. In a mixed ATM class (PD and non-PD), sensitivity to confidentiality and privacy will influence your approach.
Plan to have a private conversation, on the phone and/or in person, with a new student who is managing PD to assess their physical abilities and any necessary accommodations. While we respect privacy and never want to call attention to any student, there are often safety issues in getting up and down from a chair or the floor. A conversation about that up front, working out how you can respect and support the student’s independence while maintaining safety, is key. Strategic chair placement, or casually standing nearby when it’s time to get up can also help.
Although the population with PD varies widely in their physical abilities, consider the following access issues:
- Is ample parking located close to your teaching venue, including the distance inside the building to get to your room? Are spaces for those with a disability placard available? Perhaps you can “shorten” the distance by making a side door temporarily available.
- What are the physical obstacles from the car to your room e.g. heavy doors to open; potentially slippery areas; steps, curbs, cracks or gaps in the walkway? Recognize that some everyday situations can trigger freezing for some PwP.
- Are there areas of dappled or shifting light, glass panels that look like doors, shiny floors susceptible to glare, or sudden shift from a very bright to much darker space?
- Is your teaching space near a restroom and is it easy to get there quickly if needed?
- Are a variety of supports available: a chair, a steady low platform to “shorten” the distance to the floor, even a bed-height platform for those unable to go to the floor? Plus our usual stock-in-trade head pads, knee supports and other supplies.
During my early months teaching this group, communication was the most challenging aspect. It’s common for PwP to lose mobility in their faces, as well as in their extremities. This means that they don’t show facial expressions clearly, if at all. I felt disoriented without facial feedback from these students. Here’s what I learned PwP need for effective communication:
- Be more direct (gently), and ask if something is understood. Focus directly on the person’s face, and allow your own face to be expressive.
- Simplify information and questions – one thing at a time.
- Give a non-verbal movement cue, for example, nod your head slightly, maintain eye contact and ask a question.
- If you suspect an instruction is not clear, even make a “thumbs-up” sign to confirm.
- Wait for a response
- For those with more advanced challenges, let them get settled in their chairs first before anything beyond a simple greeting.
Over time, one does get better at reading even a “masked face” (that’s the symptomatic term). Each new student is unique, so expect your own “learning curve” as you establish your relationship with them.
- As ATM teachers, we are used to communicating verbally and electronically with the students in our class. But for PwP with more advanced symptoms, initial contact may be with the Care Partner (the preferred term in the Parkinson’s community to denote the family member most involved in supporting the person with PD). These people do hero’s work. Make a point of visually and/or verbally connecting with them before or after class. For example:
- Review some aspect of movement or functional focus, either individually or with the group as class is ending and Care Partners are arriving
- Solicit Care Partner suggestions for challenges to address in class
- Provide a calendar listing of class dates (quarter-page listing of dates, times, and contact info can be posted easily on the refrigerator)
- Email reminders of a break and resumption of class.
While it’s a bit more organizational involvement than usual for us as teachers, Care Partners are juggling many demands, and appreciate suggestions, brainstorming movement solutions, and the hour of respite that class may provide them.
- Positive feedback is especially important for PwP. Without the usual motivation and the “feel good” contribution of adequate dopamine, these students may not experience the personal satisfaction that our classes often provide. Challenges with perception may preclude their appreciation of the changes or improvement in their movement. Consider:
- Individual verbal feedback when the student has improved in some way, perhaps linking it to some functional activity they do at home
- Send a personal note or email when you’ve seen a positive change in the student’s movement patterns, for example more arm swing or shoulder movement, or standing more upright. While all students will appreciate this feedback, those with cognitive decline may quickly forget. Telling the Care Partners also not only informs them, it offers hope. Appreciation and acknowledgement of effort and improvement are gifts we can offer.
- For the more independent students, a comment in class can often help them assess their improvement, for example, “I remember that when we began rolling forward and back on our sitting bones, how much swaying you were doing. Notice now how much your spine is changing its shape now.”
- Class can become a family. Although we each bring our own personality and style, facilitating connections between students is particularly valuable for people living with PD. Again, the decreased amount of dopamine means that the pleasure and reward feedback loops are less accessible. Vocal and non-verbal communication can be quite challenging, too.
- If everyone in the class has PD, you can create a safe space where understanding and belonging are a given, and you will see the personal connections deepen. For example, when we hear that a member of our class is ill, I bring a get well card to class for everyone to sign; or I write a dictated message from any for whom handwriting is difficult.
- In a mixed class, the person with PD has the experience of successfully participating in a “regular” class. I have found that as they share their story and experience the challenges of PD over time, other students offer support and understanding.
- You become the resource. Our training as “movement detectives” ideally equips us with regard to the erratic and changing nature of this disease. Check in with a student in a specific or more general way to open the door to problem-solve. Even simple tasks that we may take for granted, like turning over in bed, can form the basis of a lesson. Over time, you’ll develop quite a toolbox of PD-specific ideas. As you learn more about Parkinson’s and the local resources in your community, you will also become an important educator for those new to the disease.
The daily variability inherent in the disease, as well as changing medication levels, requires flexibility and continual adjustment. Link specific movement explorations to everyday activities to support learning and motivation.
- Because of the tendency to move small, and not access the whole self, PwP benefit from targets, an idea we already use in ATM. For instance, a clock face as an orienting image can expand to encourage larger, fuller movements. Ask students to increase the size of the clock or to “draw” clocks around themselves in various planes or at various levels and move toward particular numbers. Specific use of the eyes, like looking at the hand, is also very helpful.
- Images can be particularly helpful. They provide a shortcut to simplify communication and give students an easy reminder to apply when on their own. Here are some of my favorites:
- Imagine sitting in a “teeny, tiny phone booth” and as you roll your pelvis in various directions, be sure you don’t bump your head!
If your collar bones (or front of your shoulders) had small headlights on them, where would they be pointing as you sit or as you walk? For those with cognitive challenges for whom a visual cue can be helpful, I’ve even made little headlight cutouts they can tape onto their collar bones as a reminder during class.
- Use your “pocket creases” as an indicator of the openness of hip joints and uprightness.
- Rhythm and timing are valuable additions to ATM lessons and can help address the tendency in Parkinson’s to move very slowly. Of course, learning requires a slower approach within a comfortable range. But this group needs to expand the range of their function to manage in the world, so changing the pacing or incorporating a rhythm is another way to add both novelty and fun, and activate more of the brain. Because speech is often affected, adding vocal elements can be self-cueing. Sometimes I ask students to change speeds and chant a pattern like “S-l-o-w, s-l-o-w, fast, fast, fast” which can also be applied to size or direction.
- Add resistance or weight to help a person become more aware of how they move. Some possibilities are:
an 18-inch length of 1-inch elastic tied in a loop can be held with two hands out in front of yourself, bow-and-arrow style. One hand holds the elastic steady while the other hand pulls the elastic, that elbow moving back along your side and behind you. Allow the pulling arm to rotate as you pull towards yourself so the palm faces the ceiling when the hand comes alongside your ribs.
- Small beanbags offer many options for sensing weight and direction, and are a fun way to incorporate coordination, targets, and precise movement.
A ¾-inch dowel rod held with two hands horizontally in front can increase the sense of balance for some, and allow more confidence in standing lessons. Two dowel rods held by a pair facing each other or in other configurations, if safe for the students involved, can be used for resistance, coordination, or feedback.
- Freezing can be frustrating for the PwP, and disconcerting for other students. Be ready with a number of ideas to try or combine. Once you know it’s happening, stand near the person for safety, and calmly suggest some of these actions:
- Stop, breathe, and stand tall with feet wide. A narrow stance makes it more difficult to shift weight to free a foot for movement.
- Ask the person to estimate the number of steps to a target in the direction they want to go. Tell them to begin to walk counting their steps out loud. Walk and count with the student. In time, students may be able to unfreeze while counting silently in their head. Counting is a key ingredient and interrupts the pattern.
- Shift weight, perhaps adding the arm swing of walking, or start with arms sweeping side to side to encourage weight shift on your feet.
- Change your focus to a spot on the other side of the doorway and start toward it with a big step.
- Imagine stepping over a line, or use painter’s tape to actually create a line in areas of common trouble.
- Find a walking mantra: big steps, feel the heel, headlights up.
- At another time, help the person to identify their triggers for freezing. Be aware that instability of any kind, even lack of proper support from shoes, can be a trigger for some. Stress and anxiety also play a role.
- Stop, breathe, and stand tall with feet wide. A narrow stance makes it more difficult to shift weight to free a foot for movement.
Perhaps the suggestions above have already stimulated your own ideas. Because the disease has so many elements, all sorts of ATMs can be useful. A focus on the major challenges of PD keeps the connection to daily life. Here’s a start:
||Proximal focus: spine, pelvis, shoulders
Clock Lessons – not too complicated!
Any rotational and/or folding lessons in variety of positions
Candlesticks – sitting, standing, lying
Side-bending – sitting, lying, standing, half-on-chair
Arm/Hand – sweater on & off, sliding arms, fingers
Breathing – combine with other movements
Sitting and Lying Prone Lessons
Bones for Life® processes
Hip Extension: lifting pelvis on standing feet, side-lying folding and opening, taking foot back
Improving Upright Organization – (Chava Shelhav)
Avoid feet crossed over – encourage wider stance
|Proximal issues of coordination and flexibility
Bones for Life®- fall prevention/recovery
Lessons on floor with added balance challenges – lifted pelvis, X knees, foot/arm(s) in air, feet on curved, soft or moving surfaces
Ankle, knee and hip joint flexibility
Side bending, step recovery
||Sit-to-stand from chair, up/down from floor
||Standing lessons, weight shifts, not too complicated
Tie it into many other lessons
Walk for Life® — consider teaching use of walking poles, especially Exerstrider Poles which provide a “shelf” for the side of the hand to push down into instead of using a strap which can be difficult or anxiety-producing
||Mouth and Jaw Lessons
||Interlaced and pressing fingers (can help quiet tremor for some)
Bell Hand, Hand in Honey Jar
Interlacing Fingers and Toes
Painting with Soles of Feet, Ankle flexibility
Combine with Sphincters
||Pelvic Floor Lessons
Ruthy Alon’s Sphincter Lessons – ATM Series
Bones for Life – Movement Intelligence: Solutions
Get Support for Yourself
On a personal note, I feel incredible satisfaction working with the amazing group of people, who choose, each and every day, to live as fully as possible. They are an inspiration and have taught me a great deal about movement, and about determination in the face of adversity. As teachers who work with people living with a progressive, degenerative disease, we experience loss as students decline and die. Develop a support network, rituals, and other practices that are healing and sustaining. Doing so is crucial to maintain your own stamina and balance.
Marg Bartosek, GCFP, has been teaching older adults for over 27 years focusing on posture, walking, balance and fall prevention, using the Feldenkrais Method® and Bones for Life®. Her weekly ATM classes include people living with PD. Since 2014, Marg has also taught weekly “Mindful Movement with Parkinson’s” classes, drawing on ATM lessons and BFL processes, as well as Parkinson’s-specific exercises. In 2017, she added a chairs-based class for those with more advanced symptoms. Marg is a Certified Instructor for Parkinson’s Wellness Recovery (PWR! Moves) and has completed the Delay the Disease class instructor training. Find out more at margbartosek.comhttp://www.margbartosek.com
VIDEO: Marg Bartosek on Parkinson’s Diesase (2019 Feldenkrais® Summit Excerpt)