YOGA FOR SCLERODERMA
by Kathy Randolph
I. HOW IT HAPPENED.
II. WHY THIS SUBJECT?
III. THE PROJECT.
IV. THE PROPOSAL.
V. THE YOGA PROGRAM.
VI. THE VIDEO PRODUCTION.
VII. RESPONSE TO THE VIDEO.
VIII. THE PROJECT CONTINUES. .
B. THE VIDEO PRODUCTION
ii) BUDGET AND EXPLANATION
iii) FINAL COST ACCOUNTING
C. YOGA FOR SCLERODERMA (VIDEO TAPE)
D. SURVEY RESPONSES
YOGA FOR SCLERODERMA
by Kathy Randolph
I. HOW IT HAPPENED.
In late 2001 I received a phone call from Laura Lewis, the National Programs and Services Manager of the Scleroderma Foundation which is based in Massachusetts. Laura was planning programs for the Foundation’s National Conference to be held in Las Vegas, Nevada in June of 2002. As a personal yoga practitioner, Laura hoped to introduce yoga as a complementary therapy to those with Scleroderma, and was looking for a yoga teacher to present. Her web search for yoga in Las Vegas, Nevada led her to The Yoga Center web page, where she found a listing for The Yoga Partnership: Integrating Physical Therapy//Occupational Therapy and Yoga, a continuing education class for therapists taught by Marilyn McDonald, PT, and me, with a class listing for Las Vegas. My certification as a practitioner of Yoga for the Special Child, my coordination with therapists to integrate yoga into therapy programs, and my work developing personalized yoga programs for those with special needs convinced Laura to invite me to present at the Las Vegas conference, even though I am located in Reno, hundreds of miles away. I offered to teach for free, she offered to pay my travel expenses, and this project was born.
I am a karma yogi. I seek to be an instrument through whom God works, not just doing selfless service without personal motive or attachment to the outcome, but to forget that I am the worker, remembering only that God does the work.(1) When I am blessed by having work placed in front of me, I say “Yes”. I said “Yes” to a woman I had never met, to do work I had never done, and two years later this work continues, blessing me still.
My first reason for this project is because it was presented to me, a spiritual opportunity. The second reason is because yoga offers so much to those with Scleroderma. A yoga practice will always provide benefit, but I was immediately struck by the many physical, emotional and spiritual symptoms of Scleroderma that are so amenable to relief through the practice of yoga.
III. THE PROJECT.
The project started as two yoga classes to be presented at the Scleroderma Foundation’s National Conference from June 29 through July 1, 2001, described as follows in the conference literature:
YOGA FOR ALL LEVELS OF MOBILITY AND ABILITY
With Kathy Randolph
Yoga has become one of the most popular forms of exercise. This workshop will present the types of Yoga, so that when you go home to your local studio or YMCA, you will understand what would be practical for you. This workshop is not just for those who are experienced in yoga and fully mobile. Our presenter has taught yoga techniques to persons who are completely immobilized. This workshop is for all! If you have mobility issues, bring your care givers, because we can teach them to assist you into postures. This program can benefit all-young, old, mobile, not so mobile.
RELAX! HELP IS JUST A BREATH AWAY
With Kathy Randolph
You are always told that by managing your stress levels you can help manage your disease activity. In this day and age, this can be a practical impossibility! Juggling family, job, physician visits, etc. requires stamina and nerves of steel. We are going to offer you a way to reduce your stress level by learning to relax using breathing techniques. This workshop will be helpful for all those in your household that deal with the daily challenge of a chronic illness. Get ready to become very relaxed!
I researched Scleroderma and prepared programs to introduce newcomers to yoga techniques, focused on the specific symptoms of Scleroderma and the relief available through asana and pranayama. I prepared a large amount of material, with handouts, and then tailored my presentations to the interests of the group.
The conference format was to present topics in breakout sessions, with eight different presentations going on at once. Based on the number of topics offered I was told to expect 40 to 50 participants per session, and brought 75 handout packets for each presentation. I had 35 participants for the Relax! program on breathing techniques. I had 112 for the Yoga presentation. After the room filled, the doors were opened, and people were doing yoga in the halls. The conference staff were making copies of the handout packet during the presentation so all participants received one. Both presentations were audio-taped, a standard practice in conferences, so participants can buy the tapes of sessions they did not attend. The tapes were available shortly after the presentation, and sold briskly throughout the conference, as a fund-raiser for the Foundation. Based on the popularity of the program, Caroline Weller, RN, National Director of Education for the Scleroderma Foundation, asked me if I would make a video of Yoga for Scleroderma. I said “Yes!”
IV. THE PROPOSAL
To create a therapeutic program of yoga poses selected for their benefit to symptoms of Scleroderma, and to make the program available nationally, affordably and permanently.
V. SCLERODERMA AND IT’S SYMPTOMS
A Scleroderma is an autoimmune connective tissue disease affecting blood vessels and collagen.(2) The term Scleroderma means “thick skin”. There are two kinds of Scleroderma: the systemic form, which affects the internal organs or internal systems of the body as well as the skin, and the localized form, which affects a specific area of skin.(2)
Scleroderma affects the collagen-producing cells of the body. Collagen is the major component of connective tissue, the skin, tendons, joints, ligaments and the fascia around the organs. When the body is injured, collagen is the scar tissue. In Scleroderma the cells produce collagen, even with no injury to be repaired, and once started, the cells don’ t stop.
The average patient is diagnosed in her forties, and female patients outnumber males by four to one.(3) Researchers estimate there are 300,000 cases of Scleroderma in the U.S.(4) Localized Scleroderma is more common in children, while systemic Scleroderma is more common in adults.
In localized Scleroderma this excess collagen leads to thick tight sections of skin anywhere on the body, either in patches (morphea), or in a line which runs down a limb (linear Scleroderma), or occasionally on the face (Scleroderma en coup de sabre).
These are the most common symptoms of Scleroderma, and the effects range from mildly inconvenient to fatal. The emotional and spiritual stress of living with a chronic and debilitating condition that is sudden onset, little understood, incurable, possibly fatal, and characterized by exceptions only increase the suffering of those living with Scleroderma.
VI. THE YOGA PROGRAM
Many doctors recommend yoga to their patients with Scleroderma, seeing it as a gentle stretching program that will benefit the symptoms of skin tightness and joint contractures, but yoga offers much more to those affected. The poses offer increased flexibility and mobility, and also strength and stamina. The breathing exercises of yoga can improve circulation, oxygenation and muscle function while reducing the respiration rate, heart rate, and blood pressure. The yoga kriyas can improve the function of the digestive and elimination systems, reducing the serious health issues presented by constipation.
The broad range in the severity of symptoms was the greatest challenge in preparing the program. As I wrote the script for the video, I reviewed the evaluation forms from the two classes I presented at the national conference, and listened to the two audio tapes of those presentations to hear the questions asked by the participants. The pranayama workshop had fairly uniform positive responses. Although overall response to the program on yoga postures was very good, those who did not feel the program met their needs were the most severely affected, who could not do most of the movements. I presented a significant amount of chair work, but for those unable to leave their chairs, the floor work was not helpful.
When I work with an individual I am able to tailor the yoga program specifically to their needs and abilities, and I am fortunate to be working with Angie Helton, who has lived with Scleroderma for 16 years. I also continuously personalize the yoga program I am teaching in my group classes, which can have up to 16 adults, all of whom I know and teach weekly, including Patty Hobbs, who has lived with Scleroderma for 4 years. Preparing a program to be presented in a one hour video format, to students who may never have done yoga before, without a teacher present, and for such a broad range of mobility called for more that one presentation for each pose. Given the limited time, I needed to prioritize the presentation to address the most common symptoms in order to serve the needs of the most students, and I wanted to provide relief for the symptoms that cause the most distress.
The greatest impact on a person living with Scleroderma is the lack of mobility due to tightening of the skin and joint pain and swelling or contractures. The effect of Raynaud’s phenomenon (95% affected) combined with the joint contractures and skin tightening in the fingers causing digital ulcers (over 50%) causes limitation in hand extension, difficulty doing many day to day tasks, and a feeling of helplessness. Another greatly affected area is the knees and hips, resulting in problems walking and driving, or even getting out of bed or a chair. Gastrointestinal problems affect 85%, and cause extreme discomfort and unhealthy weight loss, limit comfortable sleeping positions, and lead to a host of other health problems from reflux, constipation and diarrhea. (6) The stress response worsens the disease activity, so the stress of living with Scleroderma makes the symptoms of Scleroderma worse. These are the areas I chose to focus on.
To present the program at different levels of mobility, support and assistance, I chose to present a group class, consisting of me as the most mobile, Cindy Nolen, who did much of the program in a chair, and Angie Helton, who worked on an inclined plane. I worked with Angie privately several time a week in the months preceding the taping, and she also attended one of my weekly group classes. Her experience and assistance were a large part of the revisions I made from the original program to the video. Cindy did yoga for the first time in our run-through the day before taping, and the video is her second yoga class. I wanted people watching the video to feel that they could do it, even if they had never done yoga before, and Cindy’s enthusiasm and willingness make that happen.
The program begins with an introduction to the props used to assist those with more limited ability, and to relieve the symptoms of reflux in the floor work by lying on an inclined plane made of firm blankets. Then I introduced the full diaphragmatic breath, to fully oxygenate the muscles, improve relaxation, and improve the function of the smooth muscle of the colon. Scleroderma patients are often put on oxygen therapy at night to accomplish these goals, (7) while yoga provides this opportunity with every breath.
The next segment is floor and seated work, with an extensive series of hip openers presented on the floor, on an inclined plane and in a chair. A series of twists, to extend the spine, stretch the spinal muscles, tone and massage the internal organs, and improve the digestive and elimination functions are presented on the floor, inclined plane, several in a chair, and assisted on the floor. Reclining core strengtheners, vital to maintaining mobility in walking and driving, are done lying down, and on an inclined plane. Boat pose, a more vigorous strengthener, done with plenty of padding under the tailbone, is presented in three different levels. Straight knee stretches for the hamstring, abductor and adductor, essential to maintaining the knee and hip mobility necessary for walking, are done using a strap, both on the floor and on an inclined plane. The backbend is bridge, done supported by blankets, unsupported, enhanced by arm position with two hand variations, and including a pelvic tilt or moola bandha to increase the core strengthening aspects of the pose.
Moving to the seated/standing work, the program offers a side stretch, either a seated half moon, or triangle, shown in a moderate and advanced form. Standing knee to chest pose and tree pose provide the balance practice, with tree shown using a chair for support.
Although the bandhas are traditionally taught one on one, to students with some yoga experience, the high incidence of gastrointestinal involvement, the severity of the symptoms, and the response of the participants at the national conference convinced me to go beyond the digestive relief offered by rotations to the more vigorous practices of the bandhas and kriyas. I discussed teaching these practices on a video for beginners with my teachers Lisa Dalberg and Sonia Sumar, and both agreed the extreme need warranted presenting these more advanced practices. The first instruction is for uddhiyana bandha, taught standing and braced with hands on knees to protect the low back. Then uddhiyana rajas, or central nauli, moving the abdominis rectus in and out is presented. Finally, nauli kriya, moving the abdominis rectus back and forth, encouraging the peristaltic action, and recruiting muscles to churn the contents of the colon to a more liquid form so that gravity can accomplish what the impaired smooth muscle of the colon may no longer be able to do.
To provide the benefits of inversion, the full oxygenation of the organs and muscles, and the circulation of the lymph system so important in reducing inflammation, feet up the wall pose is demonstrated, as well as a modified version with lower legs on a chair while lying on an inclined plane.
To prepare for stretches for the hands and fingers, we review the full diaphragmatic breath, and learn the ujjayi breath, to improve circulation, increase the digestive fire and oxygenate and warm the muscles and skin. Then a series of hand and finger stretches demonstrated with and without assistance are practiced.
The deep relaxation is a guided visualization featuring the breath, as improving circulation and oxygenation is a vital part of symptom relief, and relaxation and stress relief can do so much to reduce the disease activity.
VI. THE VIDEO PRODUCTION.
In March of 2003, Caroline Weller, RN, National Director of Education of the Scleroderma Foundation called and asked if I could make the video we talked about in 2002 with a grant from the Texas Bluebonnet Chapter. I said Yes one more time. I called Marcia O’Malley, who does all my video production, and asked her to be producer and director, and then I called Caroline to find out how the amount of the grant. Then Marcia and I started recruiting the staff and getting bids, and I started working on the budget. Everyone working on the project agreed to not to exceeds on their estimates, so even if time or costs went over the original estimate, the payment was capped and the budget was guaranteed. In addition, because of the nature of the program, everyone offered us discounts from their normal rates, while producing the highest quality work. Marcia arranged for videography, lighting, equipment, production, and post production, while I arranged for music, voice-over, medical consultant, studio, travel, and our graphic artist, who handled getting bids for the tape production.
After we figured out what everything else would cost, Marcia and I split what was left, and agreed to accept royalties on actual videos produced in the future. This allowed us to make the video and produce the first 250 copies out of the grant. This would provide 170 copies to be given free to every chapter and support group in the United States and Puerto Rico, with the rest to be sold, jump starting the self perpetuating inventory, and making the program permanent. The videos are sold exclusively by the Scleroderma Foundation. Out of the sales price, the Foundation replaces the video in inventory, ordering them in lots of 200, and receives the remainder as a fund-raiser.
We came in at $99 under budget, and $106 under the grant.
VII. RESPONSE TO THE VIDEO.
The video premiered at a surprise presentation at the Scleroderma Foundation Leadership Conference in September, 2003. Cindy, Angie and I presented the different levels, working standing, in a chair and on the floor, with clips from the video shown on two giant screens to a group of 115 participants. The reception was enthusiastic and the participation was extensive. There were people doing yoga on the floor, in chairs, and standing, and eventually about 90 people, most of whom had never done yoga, tried nauli kriya for the first time. There was lots of laughter, comments and comradery. Any doubts I had about presenting the bandhas and kriyas were immediately dispelled by the eagerness of people to take an active role in their own health, regardless of how strange it might seem initially. Throughout the weekend, many people approached me privately to thank me for including so much on the gastrointestinal issues in the video.
Each chapter and support group received a free copy of the video, and many of those chapters and groups were represented at the conference, so those were passed out immediately. Group leaders were encouraged to use the video at monthly meetings, and some are now allowing members to check them out between meetings.
A survey goes out with each video, and I am now receiving responses from people who are using the video. Although there are not enough responses to constitute a valid sample, early indications from the 10 I have received are that the video is being used by the severely affected. Of the physical poses they are mostly doing the first segment of floor or chair work. The greatest response is to the breath work for circulation (often done daily), the hand stretches (3-4 times a day), and the guided relaxation (done frequently).(See Appendix D)
650 videos have been produced (the most recent lot of 200 were received last week), with 170 given to chapters and support groups, and 280 sold to date. Surveys go out with each video, and I plan to do a formal analysis when enough have been received to provide a valid sample.
I will teach three yoga classes at the National Conference in June, two on the techniques presented in the video program, and one on the breathing and circulation techniques.
I have started a monthly class of Yoga for Scleroderma at The Yoga Center, also suited to those with mobility limited by other conditions such as arthritis and fibromyalgia, and offering a complete chair series for those in wheelchairs. This class is free, with donations accepted.
Yoga provides benefits to those living with Scleroderma by increasing circulation, digestion, flexibility, and mobility. The pranayama and deep relaxation help relieve the stress of living with chronic pain. I believe that most debilitating aspect of the disease is the feeling of helplessness that comes to an active individual who suddenly finds herself unable to perform routine daily tasks, including self care. I think that the greatest benefit Yoga offers to those with Scleroderma is the ability to take action on their own behalf. One of the survey respondents said, “Thank you so much for making this tape. It is the first exercise I have been able to do with success since my diagnosis 5 years ago.”
Cindy Nolen said “The foresight of the Foundation to make this video exclusively for scleroderma patients is wonderful. It has improved my health, both physically and mentally. THANK YOU!!! “
Yoga for Scleroderma is now available on DVD!
1 Sri Swami Satchidananda, The Living Gita: The Complete Bhagavad Gita , Integral Yoga Publications, 1988, p.123.
2 Maureen D. Mays, M.D., The Scleroderma Book: A Guide for Patients and Families , Oxford University Press, 1999, p. 5.
3 The Scleroderma Foundation, Inc., Scleroderma, an Overview , The Scleroderma Foundation, Inc., 2001.
4 The Scleroderma Foundation, Inc., If You Have Scleroderma . . .You Need Not Feel Alone! , The Scleroderma Foundation, Inc., 2001.
5 Maureen D. Mayes, M.D., The Scleroderma Book: A Guide for Patients and Families , Oxford University Press, 1999.
6 Maureen D. Mayes, M.D., The Scleroderma Book:A Guide for Patients and Families , Oxford University Press, 1999.
7 Maureen D. Mays, M.D., The Scleroderma Book: A Guide for Patients and Families , Oxford University Press, 1999.
8 Sri Swami Satchidananda, The Breath of Life:Integral Yoga Pranayama , Integral Yoga Publications, 1993, p.29.