Polycythemia Vera (PV)


    “I appreciate waking up each morning and welcoming a new day. I used to think that these sentiments were corny and trite. Now I get it. I enjoy everything that I used to take for granted before.”

    Catching Your Peace: Yoga for Wellness

    For Linda Reekie, there was no hesitation about participating in a study examining the benefits of yoga for MPN patients. A polycythemia vera patient of seven years, Linda learned about a yoga study offered through the Mayo Clinic, in partnership with Arizona State, and viewed it as the perfect opportunity to potentially improve her symptoms without the use of more pharmacological intervention.

    One of the most common symptom burdens of MPN patients is persistent fatigue, and for Linda, this has unfortunately been the case. Since her diagnosis, Linda has battled migraines, fatigue, and of course, the anxiety that ensues with a cancer diagnosis.

    “I think most MPN patients get into both a physical and mental slump due to the symptoms of their disease and the side effects of the medications they are on. My slump has been both gradual and progressive. When the opportunity to be a part of this study came up, I jumped on it as though it were a lifeline,” says Linda.

    Although it had been forty years since Linda had last practiced yoga, she wasn’t afraid to give it a try again. The incentive was different now. The idea of having more energy and feeling better without the use of another prescription drug was appealing enough to Linda. And so, in early 2018, she became a participant in an eight-week study on the benefits of yoga for MPN patients, conducted by Dr. Jennifer Huberty of Arizona State University in partnership with the Mayo Clinic. Linda participated in yoga and meditation classes online and made modifications to poses to fit her abilities. Over the course of the study, she noticed that both her energy level and quality of sleep were improving, stating: “I had read that meditation and exercise were beneficial for quality sleep, but I didn’t realize how true that was until I participated in this regimented program.”

    Ryan Eckert, the research coordinator of this study, and his team measured participants’ inflammation levels with blood draws.

    “Participants’ blood levels of certain markers of inflammation were measured at the beginning and end of the study, and we found a significant reduction in tumor necrosis factor-alpha, which is a biomarker associated with inflammation,” Eckert says. “In MPN patients, there is research demonstrating that increases in biomarkers of inflammation, including TNF-a, are associated with a worsened overall symptom burden. This is the first study in MPN patients that have demonstrated the utility of yoga for improving biomarkers of inflammation.”

    Since participating in the study, Linda is hooked on the benefits of yoga and meditation. And it works for her.

    “In addition to keeping me limber, yoga allows my blood to flow better, which is so critical to PV patients,” she says. “When I do not practice yoga or walk for a couple of days, I feel sluggish and tight. My head feels heavy and I don’t feel the clarity of thought. I know this is true because I have personally experienced the difference.”

    Linda isn’t alone in reaping the benefits of this study. “The most common type of feedback we received during post-study interviews had to do with the benefits of the meditative component of yoga on sleep quality. MPN patients found themselves sleeping better and could turn to their newly acquired meditation skills to help themselves fall asleep when they were experiencing difficulties.” Eckert says.

    For Linda, participating in this study has been life-changing. She now mediates daily and has even convinced her husband to follow her lead. Although practicing regularly isn’t always easy for her, she’s now committed to setting aside time to experience the healing benefits of yoga and meditation.

    “As far as the mindfulness meditation is concerned, it reminds me to be more present at the moment and not stress about the possibilities that could be in my future. This is a huge benefit to patients with MPNs because the tendency is to worry about the progression of our disease.”

    Living with PV presents its share of challenges for Linda, but some things have changed for the better. Slowing down with a gentle yoga flow and meditation was perhaps just what Linda, a naturally fast-paced native New Yorker, was in need of.

    “I appreciate waking up each morning and welcoming a new day. I used to think that these sentiments were corny and trite. Now I get it. I enjoy everything that I used to take for granted before. I had to slow down somewhat. My senses are more heightened than they used to be, and I’m more aware of the taste of food, and the beauty and sound and smell of the beach. I love that!”

    In living with an MPN, a new normal slowly evolves – a new balance that must exist in order to find peace. For Linda, learning how to catch that elusive peace and hold onto it, one breath at a time, has brought her world into balance. In turning to yoga, Linda has discovered a world rich in beautiful simplicity. A world bathed in both light and shadow. A world where cancer and breath coexist, just as naturally as the ocean and its waves.

    Contributed by Jennifer Acker

    These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis. It does not represent the views or opinions of anyone associated with the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.

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