Observe and Accept: A Pathways Approach to Multiple Sclerosis

Affect

Rachel described 3 years of worsening mood lability, anxiety, and depression since the diagnosis of her MS. She realized that the disease and her medications were possibly contributing to her moodiness. However, she was also aware that her self-esteem had plummeted with the progression of her illness.

Rachel had been proud of her skills and professionalism as an accountant, and now felt like a failure as a professional when she cancelled her onsite business consultations when her symptoms worsened. There were also times of poor concentration, when she had to turn over key accounting tasks to colleagues, and this left her feeling a failure in the accounting firm. Rachel had also been proud of her mothering, and now ruminated on the times she could not transport her oldest girl to soccer and ballet, and times she could not volunteer at the school. She feared that either her death or further disability would rob her daughters of their happiness.

Rachel completed a Beck Depression Inventory (BDI-II) and scored 36, in the severe range. She completed the Beck Anxiety Inventory and scored 32, indicating severe anxiety. She also reported sleep disturbance, with delayed sleep onset, frequent awakening, and daytime fatigue.

Physical activity

Rachel described an athletic lifestyle prior to the first severe episode of MS. Until her third pregnancy, she had run three times a week, and frequently bicycled pulling her daughters in a cart behind the bicycle. She was proud of her previous fitness, and perceived herself now as “flabby, dowdy, and out of shape.”

Rachel reported deterioration in the family's nutritional patterns. There were many days that she suffered muscle fatigue or weakness, and consequently she relied increasingly on take-out food or packaged meals. Rachel also experienced a variety of gastrointestinal symptoms during her MS exacerbations, including nausea, heartburn, and diarrhea. On many days, she felt no appetite at all and food smells sickened her. Her motivation to cook was minimal, which compounded the problem of being too weak to stand up.

Preparation of healthy foods

Rachel initially decided to set three lifestyle-related goals for her Level One program. She decided to work in the kitchen with her sister on weekends when she was well, and prepare healthy meals to be frozen and served on days she felt too weak or ill to cook. Her sister had proposed this idea several times, to improve the nutrition in both households, and Rachel now felt ready to take this project on.

Walking

Rachel also decided to walk three blocks to a nearby library, and then three blocks back, two to three times a week with her daughter, as her muscle strength allowed. She also expressed the intent to gradually increase her walking distances, as her condition allowed.

Mindful breathing

Finally, Rachel wanted to learn a basic self-calming technique, and agreed to implement a mindful breathing exercise, to relax her body and quiet her anxious thoughts. She practiced a breathing exercise in the office with her health coach, placing one hand on her abdomen and one on her chest, feeling the movement of her abdomen and chest with her breathing, breathing in slowly and gently through the nostrils, and then slowly and gently exhaling through pursed lips. She was encouraged to “mindfully wrap her awareness” around the process of her breathing, and simply “observe and accept whatever unfolded.”

This breathing exercise was also used at the beginning of each of Rachel's clinic contacts, with any of the staff, to reinforce Rachel's learning and to enhance her mindful presence and that of the Pathways team members.

Level One progress

Rachel did well on her Level One goals for 2 weeks, and then suffered a severe exacerbation of her MS symptoms, with blurred vision and difficulty standing. She was grateful for the frozen meals, because for 3 days she was unable to stand or carry out any work in the house. She was delighted that she and the family could continue to eat in a healthy way, even when she was unable to function. She continued to engage in her mindful breathing several times a day, and found herself calmer despite her symptoms.

Rachel was unable to carry out her walking for 2 weeks, which frustrated her. She utilized her breathing exercises to remain calmer despite this setback. She also noticed that at least during this exacerbation, she still had good motor control in her arms, and so she carried out some upper body stretching exercises in her bed and in her chair.

Rachel determined to continue her Level One goals, long term, and to include upper body stretching, along with her walking.

Mindful awareness

Rachel was impressed that her mindful breathing exercises were already serving to calm her and reduce her anxiety when symptoms worsened. She asked how she could learn further mindfulness awareness skills as part of her Level Two program. Mindfulness is an approach based on Buddhist Vipassana traditions. Through mindfulness exercises, human beings learn to cultivate a detached awareness, observing whatever presents itself to our consciousness, without judgment, without self-criticism, and with acceptance. Mindfulness seemed an appropriate tool for Rachel to utilize in facing and accepting the changes in her body that were so far beyond her control.

Rachel's health coach gave her an educational CD on mindfulness meditation by Jon Kabat-Zinn (Kabat-Zinn, 2005) and a copy of his book, Wherever You Go, There You Are (Kabat-Zinn, 1994). Rachel agreed to attend a mindfulness class at a church near her home, review the Kabat-Zinn material, and practice mindfulness at home daily.

Heart rate variability biofeedback home practice

Rachel observed the biofeedback instrumentation on a table in her psychologist's clinical office. She asked about learning some biofeedback to regain some control over her body. Rachel's psychologist emphasized that biofeedback would not reach or repair the demyelination in her nervous system, but might help her to relax her musculature, regulate her autonomic nervous system, and stabilize her emotions. The psychologist showed Rachel the HeartMath Inner Balance™ biofeedback device, and showed her how the Inner Balance sensor monitored the fluctuations in her heart rate. Rachel then learned to follow the Inner Balance breath pacer, and observed the effect of her paced, relaxed breathing in producing large smooth oscillations in her heart rate and increasing her overall heart rate variability (HRV). Rachel purchased an Inner Balance™ sensor to use with her tablet, and agreed to practice her HRV exercises twice a day at home.

Muscle rehabilitation

Next, Rachel asked about pursuing a program to restore her muscle fitness and tone. She perceived herself as out of shape because of what she called her surrender to the illness. Facing her intermittent loss of muscle control, she had given up most of the sports and physical activities that previously kept her fit. Rachel's Pathways team consulted with her, and referred her to a local gym that utilized a personal trainer who had professional background in exercise physiology and physical rehabilitation. Rachel set goals with her trainer to develop a set of exercises for lower body and a second set for her upper body, so that she could utilize one or the other depending on where her muscle weakness was affecting her.

Spiritual guidance

Rachel brought up a new concern, while setting her Level Two goals. Rachel expressed guilt about her anger and bitterness at God. Rachel admitted she vacillated between blaming herself for her illness and blaming God. She felt a growing spiritual despair. What meaning could her life have, if she could not be an active mother, and might spend more days in the future in a wheelchair? She asked for the Pathway team's help in locating a pastoral counselor who could help her sort out her confusion and distress about the spiritual meaning of her illness. Her psychologist introduced her to a rabbi, Sarah, who had herself experienced painful illness and tragic losses in her life, and who had shown sensitivity and skill in helping other patients with chronic conditions.

Progress on Level Two goals

Rachel attended the mindfulness class for 6 weeks, and reported that she felt she was forming a kind of mindful bubble around herself. She still experienced times of blurred vision and muscle weakness, and moments of breakthrough crying. Yet she found herself watching these events as if from a distance and commenting to herself that “there are tears there,” or “the eyes are blurring again.” She felt less anxious and less desperate and more watchful and calm. She appreciated the calming, and found it difficult to express, because she knew she still cared about her symptoms, but the distress felt lighter.

Rachel also embraced her HRV practices with enthusiasm. She reported that her previous breathing exercises seemed to flow into and help her with the HRV training. She was easily able to breathe evenly, slowly, and gently, and produce very high coherence in her heart rhythms.¹ On the Inner Balance, she could see large smooth wave forms of heart rate crossing the screen, in synchrony with her breathing. She experienced that doing the HRV practices calmed her emotionally, and assisted her in sustaining her new mindful attitude of acceptance.

Rachel attended her twice-weekly sessions with her trainer at the gym without fail, even on days when her husband had to bring her into the session in a wheelchair. Her upper body control was much more consistent, so she worked her upper body musculature on days she could not stand. In combination with the healthier meals she and her sister were preparing, Rachel gradually lost weight and tightened up the flabby limbs. Her lower body cooperated often enough that she toned her leg muscles too. She felt that even on days when her weakness was clearly MS-related, the overall strength in her musculature helped her to function somewhat better.

Rachel's spiritual distress did not respond so easily as her muscles and heart rhythms. She still felt an emptiness and darkness about her existence and the likely progression of her illness. She felt less alone after her conversations with the rabbi, which were consoling, and she thanked her for not appeasing her with platitudes. MS remained frightening and tragic. The rabbi, Sarah, invited Rachel into a spiritual conversations group monthly with six other women with chronic illness, and Rachel began opening herself to these women as well.

Nutrition

In preparing healthy meals to stockpile in their freezers, Rachel and her sister had followed the minimal guidelines from the National MS Society, reducing saturated fat and increasing fiber (National Multiple Sclerosis Society, 2017). She now requested a referral to a professional to consider whether dietary changes or dietary supplements might improve her overall condition. Her Pathways team referred her to registered dietician with training in functional medicine, who worked in a collaborative arrangement with a physician. After extensive laboratory testing to identify food sensitivities, mineral deficiencies, and imbalances, the dietician recommended that Rachel eliminate dairy-based foods, minimize saturated fats, and increase foods high in polyphenols, including vegetables, fruit, and fruit-based beverages. She also was directed to take a probiotic, vitamin D supplements, and DHA.

Physical therapy and muscle biofeedback

Along with muscle weakness, Rachel suffered times of severe muscle spasticity, spontaneous contractility of her limbs. Rachel's work with a personal trainer had increased her muscle strength and moderated the spasticity, but it was still severe enough to cause pain at times. Physical therapy and stretching exercises are often useful therapies for the spasticity in MS. Rachel was referred to a physical therapist, who prescribed a series of stretching exercises and taught Rachel a progressive muscle relaxation technique (McGuigan & Lehrer, 2007). During each physical therapy session, the physical therapist monitored Rachel's muscle tension levels with an electromyograph, a biofeedback device that showed Rachel and her therapist the moment-to-moment changes in muscle tensions. Rachel learned to tense her musculature in one muscle group at a time, maximize the tension levels, and then gradually release the tensions, while increasing her awareness of the differing sensations of tension and release. Her psychologist encouraged Rachel to think of these exercises as mindfulness for the muscles, enhancing her ability to mindfully observe the spasticity, voluntarily stretch the muscle and exaggerate the contraction, and then release the contraction, patiently watching to sense the extent of the release.

Acceptance and Commitment Therapy and mindfulness

From the beginning of her Pathways treatment, Rachel repeatedly asked her psychologist when her psychotherapy would start. Yet she also reported consistent improvements in mood throughout the various skill- and behavior-oriented activities in Levels One and Two. Her breath practices and HRV practices, along with the variety of mindfulness exercises, were in fact a preliminary form of mind-body psychotherapy and served to reduce her physiological activation, emotional tone, and negative inner dialogue.

For Level Three, Rachel's team suggested she engage in 10 to 12 sessions of Acceptance and Commitment Therapy (ACT; Hayes, Strosahl, & Wilson, 2003). ACT is a mindfulness-based form of psychotherapy, and was intended to integrate her progress to date with psychotherapy sessions. Instead of disputing and combating any distressing thoughts and feelings, ACT guides the patient to mindfully observe and accept such thoughts and feelings. With her ACT therapist, Rachel set her therapeutic goals as: (a) optimizing her mindful acceptance and (b) desensitizing her remaining illness related fears.

Progress in Level Three therapies

Rachel adhered to the guidelines provided by her nutritionist. On this dietary regimen, she felt less nausea, less heartburn, and better appetite. When she occasionally broke the guidelines and ate dairy-based foods or dishes high in saturated fats, the heartburn and nausea recurred, which validated for her that the dietary program was beneficial. Food smells still sometimes sickened Rachel, but with her stockpile of meals in the freezer she was able to serve a meal for her family, whether she ate with the family or not.

Rachel reported that with her physical therapy stretching exercises and the progressive muscle relaxation exercises she could now reduce her spasticity and related pain except on her worst days. She also was more aware of the onset of stress-related muscle tension in her shoulders, neck, and facial muscles. Once she noticed this tension, she was usually able to identify the problem or worry triggering the tension, and relax her musculature.

Rachel found several benefits from her ACT. For example, her ACT therapist suggested that she remember her mindfulness when she was troubled with her sense of meaninglessness and religious despair. She had not considered that accepting despair might be positive, yet as she focused on observing and accepting the despair, the intensity of her distress diminished. She concluded that for a 36-year-old woman to live with occasional despair in the face of a progressive debilitating disease might be normal and reasonable, and not something to be ashamed of. She shared her mindfulness practices and the Kabat-Zinn (1994) book with her spiritual conversations group, and taught several of the women to utilize an acceptance mindset in their own moments of distress.

One of Rachel's bittersweet decisions during her weeks of ACT was to change her employment. She talked with the head of her firm and negotiated a new contract, leaving client contact to others in the firm and committing herself to 15 to 20 hours of home office work weekly on financial reports and audits. She missed the customer contact, but now could complete her work most weeks because she was able to sit at the computer in a wheelchair, as needed, and complete reports except on her worst days. Whenever she felt a sense of loss for her public accounting career, she utilized her mindfulness and consciously accepted that sense of loss.

After several weeks of ACT, and following a consultation with her primary care physician, Rachel discontinued her antidepressant medication. She had never perceived much benefit from the medication, and her moods were unchanged as she titrated the medication downward, and then discontinued it completely.

At the close of 12 sessions of ACT, Rachel once again completed the Beck Depression Inventory (BDI-II) and the Beck Anxiety Inventory. On this occasion, 8 months after her initial assessment, she scored 16 on the BDI-II, which was high in the mild range for depression, and 8 on the Beck Anxiety Inventory, indicating normal range to minimal levels of anxiety. She reported that she still suffered episodes of breakthrough crying, but felt very different emotionally. She described a kind of calm acceptance colored by sadness. On one occasion, Rachel quite effectively mimicked her ACT therapist, repeating in a deep gravelly voice, “OAA,” “OAA,” “observe and accept.” She felt grateful for the therapist, and bought him a custom-made stained-glass plaque with the words “Observe and accept.”