|Yoga and ALS (Amyotrophic lateral sclerosis)
By Jeannie Stevens (February 2008)
This article is intended to inform and support all teachers and therapists working with the life-threatening disease ALS (Amyotrophic lateral sclerosis).1 Also known as Lou Gehrig's disease, ALS is a devastating neurodegenerative disease. Those living with the disease become progressively paralyzed due to degeneration of the upper and lower motor neurons in the brain and spinal cord. Eighty per cent of people with ALS die within two to five years of diagnosis.
It is nearly one year since my ALS client passed away. It seems appropriate that I now write about his courageous story and his relationship with Yoga in the last eight months of his life. When I was first invited by his wife to come and work with her husband, who had recently been diagnosed with ALS, I knew what ALS was but had never had personal experience with the disease, either as a yoga teacher or hospice volunteer. Ironically, I had only joined IYAT the previous year and was just beginning to enter the conversation around “What is Yoga Therapy?” And here I was, invited to work with someone who would not ever “recover” his physical health. Here was a first hand opportunity to explore “What is Yoga Therapy?” and how it could provide assistance in managing this life-threatening illness.
I first met my 57 year old client in early June 2006. He and his wife owned a large dairy farm in the Pacific Northwest. A very charismatic figure, used to getting things done, he was optimistic that he could beat this illness. He was still walking at the time, although with canes, and stairs were becoming difficult and unsafe to maneuver.
The day we met I asked him “Why yoga?” and he told me that his wife and daughters had been recommending yoga to him for a number of years to address his bad back. Now he finally had “the time” as the illness was limiting his involvement in the daily business of the farm. I asked him what he was looking for, and he said that at least initially it was help with his back and his breathing. Diminished breathing capacity is often the actual cause of death in ALS patients as the respiration muscles lose their ability to work. I agreed to see him twice a week. Yoga therapy became part of an integrative approach to dealing with his condition.
The Early Weeks
When I began to research ALS I specifically looked for any references to the illness in the yoga world. I found only one small article about a yoga teacher’s last meeting with a student who was dying of ALS. The only clue about how to proceed was what I found on ALS websites relating to the basic rehabilitation routines to address range-of-motion exercises. My initial approach was to translate yoga into a farmers’ language, i.e. structure and alignment; adaptability and creativity; and a general sense of the interconnectedness of life on the farm. This provided a language bridge for the two of us.
Because my client had a history of lower back problems, in the early weeks we had a general discussion of anatomy and alignment. We soon discovered that using traction before proceeding with our daily routine facilitated a much better result as well as immediate relief of up to 60% of his chronic back pain.
The Daily Routine
Our sessions ranged from 1-2 ½ hours and had a four part focus: relaxation; breath work; physical exercises; and meditation. Each session was built upon and adjusted by the previous session. I made an easy-to-follow chart to encourage practice between sessions.
Each morning, after a general check-in, the client was transferred to the floor using a harness and battery-operated pulley attached to the ceiling. The use of blankets, bolsters and pillows were arranged on the floor prior to the transference for initial support.
In order to facilitate work with the breath, we began with deep relaxation, including guided meditation. ALS is a very debilitating disease, often resulting in stiffness and/or collapse and compression due to muscle deterioration. Starting with relaxation allowed an easing and rebalancing of remaining “good” muscles that were constantly being over-taxed by over-compensation.
Often as result of this relaxation, feelings and concerns arose. This allowed an opening for discussion around the psychological challenges at losing the ability to do the simple things in life and the emerging dependency on his wife, family and friends.
As breathing skills were his first concern we then practiced a number of breathing inquiries and techniques. Again he was very responsive and interested in learning the anatomy and dynamics of breathing. In the early months his breathing improved considerably. As the illness progressed and with the loss of muscle function (abdominal, intercostals, diaphragm) breathing became more challenging and at some times stressful. It was very important each time to assess the “abilities of today.” As his awareness of breath developed, he was able to use breathing both to assist in movement but also as an aid to quieting and calming the mind.
We then moved onto physical movements. As my client was unable to weight-bear when I first met him (he was able to barely do a cat stretch and for the first few weeks only), I began to work with basic range of motion exercises, coupled with simple yoga positions. Props (bolsters, blankets, strap, cushions, eye and sandbags and music) were used to facilitate safety, alignment and comfort. As the leg muscles began to atrophy, the use of a band to hold the legs in alignment became necessary to prevent the leg bones from falling sideways. As my client’s ability to move on his own lessened, massage of each target area became helpful. This seemed to stimulate a memory of the lost connection between brain and movement. The physical movements seemed to stave off increased stiffness and resulting pain often associated with ALS.
Each session ended with another guided relaxation and different meditation techniques were introduced. Meditation became an important “respite” from the trials and tribulations of the disease, allowing a place of refuge and renewal. With the use of the pulley and harness, the client was then returned to his wheel chair in preparation for the day. Mornings were found to be the best time of day for the practice as energy was at a premium.
The Progression of the Illness
Strength and physical movement initially diminished in the feet and legs, leaving the core and upper body fairly strong. With the progression of the illness to the core and breathing muscles the arms and shoulders compensated. This resulted in overstretching and overuse of the shoulders and arms, creating tiredness and soreness in the upper body.
Eventually a slow progression of diminished movement spread to the shoulders, arms and hands. At the end of his life my client still retained the use of his neck (although diminished) and his ability to swallow and to speak.
The Final Weeks
Our relationship ended eight months after our first meeting. Pneumonia claimed him over a 2 ½ week period. Upon being declared palliative in the hospital, my client returned home to his family and his farm to die.
It was an honor and a privilege to be in such intimate contact with the family under very trying circumstances. Not only was I able to have first hand experience of “Yoga Therapy” for my client but the experience itself deepened my understanding of the very depths of Yoga. I bow in honor to Yoga.
Other Notable Considerations
It is of utmost importance to make time to liaise with the family. Each morning before seeing the client I spent time with his wife. In this way I was able to assess how the client was doing and also able to support his wife’s needs as the 24 hour demands of home care took their personal toil. Being a good listener is the key.
It is important to remember that management of ALS can best be accomplished through an integrated team approach. The team includes the family and the health care teams – in this case, Yoga Therapy was used in conjunction with physical therapy, massage, cranial sacral work, Reiki, bio feedback and counseling.
It is also important to take an integrative approach to Yoga, and to incorporate its physical, emotional, mental and spiritual aspects. Towards the end of my client’s life, I asked “What does the yoga continue to do for you, Dave?” He told me that Yoga gave him an umbrella to understand how all of the individual modalities being used in his care were supporting each other and working towards an integrative approach to his healing.
Because ALS is incurable, it is important to be willing to discuss death and dying if and when the subject appropriately arises. Examples of daily conversation topics with the client include:
Discussion around death and dying, both generally and personally
Grieving the loss of “the way things used to be”; grieving the loss of “the things that will be missed in the future”
Strategies to stay grounded and positive
Exploring the make-up of personal identity (personality aspects); looking at how this information can be used to strategize “coping” skills; how to identify personal strengths in order to be of support to his family
Learning ways to accept support and to better communicate with close family and friends
Creating an environment of kindness, acceptance and love is essential to communication, be it between the client and therapist, the client and their inner selves, or the client and their families, friends and care workers.
Reflections from his Wife
As Dave's wife, it was probably harder for me than for anyone else to accept that what I could see with my eyes was actually happening. I still can't believe it happened. Here was this big, strong, practical “have all the answers" kind of guy unable to walk down the corridor to physio. I guess that was my first real reality check. Then it became impossible for Dave to manage the stairs. He used a stair lift, with a wheelchair at the top of the stairs. We then got lifts and then an outside lift and ramp.
His legs went first. Without meditation and relaxation and breathing and the illusion of being able to move I think he would have gone crazy. We went to a psychologist but I often wondered if he did that more for the girls and I than himself. He would joke and laugh and by doing so he remained "in charge." I think that was our main objective: to allow David as much control as we could. It was his life.
Because the muscles of his diaphragm became paralyzed it was not possible to stop the lungs from developing pneumonia. It was very hard to watch as he tried so hard to practice his breathing, to communicate with us, to try and be brave. I know that he truly appreciated all that everyone was doing to help him, but especially Jeannie, who taught him some tools that changed his life when he needed it most. He was able to experience true peace of mind when it seemed like an impossible task.
I noticed an increasing sense of calm in Dave which previous to Yoga did not exist. Breathing was the hardest technique to learn, but David would say he “had it.” I think meditation was the most useful tool of all. A farmer his whole life, David had plenty of time to think while spending many hours on a tractor. Through meditation practice he was eventually able to calm his mind completely. I believe he was in this happy place when he slipped away.
One Final Note
Many days I wondered what would happen next and how I could help. It was very important for me to listen intuitively each day, invoking guidance from my spiritual lineage and tradition, and from my own heart. Each time the source of help was endless and never failed to support me in my journey into the unknown world of ALS.
The Four Part Session
Basic supported relaxation positions; the use of props to create comfort and stability;
Basic relaxation skills; focusing on and relaxing individual parts of the body and mind;
The use of imagery; light as healing energy; cultivation of compassion and kindness towards one’s self. Learning to send out positive, supportive energy to his family and farm; and
Creating a deep connection on a cellular level to support and encourage energy movement in the areas losing their ability to function.
Discussion of the basic mechanics of breathing;
Basic supported positions; the use of props to create comfort and stability; as well as
Abdominal breathing; thoracic breathing; back breathing; Ujjai breath; Viloma; 3-part breathing; basic centering breath; use of a straw to help deepen exhalations.
Initially all movements were done by the client himself, but as the illness progressed, regular basic range-of-motion exercises were done by myself. He continued to enjoy doing all the exercises on the floor with the use of props. On the odd occasion when he was not up to the physical effort, the session was done in either his wheel chair or easy chair.
Due to a previous chronic low back concern, each session began and ended with traction. From a basic knees bent, feet flat position with a block between the knees, a padded strap is placed behind the knees. A long slow pull to the count of ten with a slow release of ten is repeated up to ten times. The “puller” is seated on a chair and must maintain awareness and safety of their own back.
As the paralysis became more apparent, the client requested that each traction session be followed by massage in the area of the fontanel and the feet. This seemed to encourage a connection between the body and the brain and enhanced the client’s ability to participate.
Pelvic Tilting (block between the knees and a material band to keep the knees together)
Abdominal work, including the use of bandahs
Shoulder and neck exercises – sitting and lying down
Knee to chest; leg stretches; foot and ankle exercises
Vaparita Karani using the pulley & therapist to support the legs
Sideways supported twist. This twist was a favorite as it provided low back relief and encouraged an opening of the rib cage facilitating easier breathing.
Yoga principals: What is Yoga? What is its role? How does an integrative approach help? Broadening ones view point - koshas; kundalini; bandahs; guna.
All movements were done with a yogic attitude, with attention to awareness and breath.
Basic meditation instruction
Contemplation of “types of thoughts” and how the mind works (Yoga Sutras)
Mindfulness meditation on the breath
Meditation on the Light; receiving and sending light for healing
Loving Kindness Meditation
Strategies for a “really” busy mind:
The writer would be pleased to provide further information on request. Please contact Jeannie Stevens at email@example.com.