Life Hacks that Help Me to Live with PH - Pulmonary Hypertension News
Life Hacks that Help Me to Live with PH - Pulmonary Hypertension News |
| Life Hacks that Help Me to Live with PH - Pulmonary Hypertension News Posted: 31 Jan 2020 07:00 AM PST We don't always have a choice about what life throws our way. But our response to challenges is something we can control. Living with pulmonary hypertension (PH), I don't always have control over my body. With that lack of control comes frustration. However, I've found some coping strategies that improve my quality of life with PH. A chronic illness like pulmonary hypertension can affect someone in a variety of ways. Daily life with energy-depleting symptoms is taxing. Through trial and error, I have found some hacks that can help make life with PH a little simpler for me. When discussing energy within the rare disease communities, we often mention that we are out of "spoons." For those of you unfamiliar with the "spoon theory," it comes from an essay by Christine Miserandino in which she describes how she explained to a friend her limitations while living with lupus. Like Miserandino, some days I wake up with no spoons. My main objective is to conserve my energy so that I can complete tasks planned for a particular day. But as you all know, even the best-laid plans can change. While using these life hacks, I have noticed that I tend to have more productive days. Who doesn't like checking items off their to-do list? Some of my life hacks have proved to be beneficial while I try to balance life with PH. I set alarms on my phone as reminders to take my pills. Currently, I have four pill alarms and a pillbox that I organize each week. I started cooking dinner as a young tween for my parents and sisters. Cooking for my family has always been an enjoyable experience for me, but the physical demands of PH have forced me to develop some strategies to continue to do that. A small foldable stool in the kitchen helps me when I'm prepping and cutting vegetables. I sometimes buy prewashed and cut fruits and vegetables if I find them at a good price. Another favorite cooking hack is my Instant Pot. This is like your grandmother's pressure cooker, but much better. I use mine to make soups, beans, chili, and shredded proteins for the week. My local H-E-B grocer offers free, next-day delivery. Kroger stores also deliver, and they may offer coupons for a free service. If you're fortunate to be an Amazon Prime member, you can order almost anything from there — if you have a local Whole Foods, look for prime savings. When I feel up to going out to the store, whether it's the supermarket or warehouse, I take advantage of the electric carts that are usually available. I haven't always been so open to using these carts. However, after a few attempts to shop without them, that ended in frustration and my walking out with no groceries. I gave in. Following are other hacks that help to make my life with PH easier:
What life hacks help to make PH life a little easier for you? Please share in the comments below. *** Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.  × Latest Posts  |
| Pulmonary Wellness Foundation Offers Free Respiratory Health Webinars - Pulmonary Hypertension News Posted: 27 Jan 2020 05:30 AM PST The newly founded Pulmonary Wellness Foundation recently launched its interactive online 2020 Lecture Series, covering an array of topics related to respiratory health for patients, caregivers, family members, and clinicians. The free webinars are presented at 7 p.m. EST every Wednesday by the nonprofit and its founder, cardiopulmonary physical therapist and author Noah Greenspan. The 2,000-member foundation was launched last year to serve as a comprehensive and advanced wellness hub for the respiratory disease community. Part of the foundation's mission, the lecture series is aimed at those living with diseases such as pulmonary hypertension, pulmonary fibrosis, chronic obstructive pulmonary disease, asthma, and non-tuberculosis mycobacteria lung disease. "People need education and often don't get it," Greenspan said in a telephone interview with BioNews, which publishes this website. "We live in a very fast-paced medical society that is 90% medication- and procedure-oriented. But when it comes to living well with a respiratory disease or in general, there are things people can do every day to improve the quality of life." The author of "Ultimate Pulmonary Wellness," and founder of the New York-based Pulmonary Wellness & Rehabilitation Center, Greenspan categorizes pulmonary wellness into medical, pulmonary exercise, nutrition, stress and anxiety management, and infection prevention. "Nearly all of these things are free and right in front of you," he said. "What happens a lot when people are diagnosed with a chronic illness is that they become a black-and-white monochromatic version of themselves. Everything in their lives becomes part of the disease. My goal is to let people know there are things they can do." The webinars were initially introduced in 2013 (archives are available here). The new and improved iteration, however, uses a Zoom platform that allows up to 500 people in the "room" simultaneously. The format allows participants to see each other, if they wish, and to question presenters. "We are trying to create a space where patients can learn and interact on a variety of topics," said Marcella Debidda, PhD, the foundation's chief patient officer. "People have the opportunity to ask questions of experts and be empowered. Knowledge empowers people." Fifteen minutes before each 1.5-hour lecture, the sounds of guitarist, singer, and idiopathic pulmonary fibrosis patient and advocate Donnie Vapor fill the airwaves. Greenspan calls the performances the series' warmup act. So far, webinars are scheduled through March. All sessions will be recorded and posted on the foundation's website. Go here to register for the live presentations, which require downloading the Zoom app. The next webinar on Jan. 29 is titled "Things that Make You Go Hmmm … Pulmonary Edition!" and will be presented by respiratory therapist Mark Mangus. Other topics to be covered in the lecture series include breathing techniques, keeping the lungs clear, preventing infections and exacerbations, interstitial lung disease, lung transplants, palliative care, exercise in health and disease, healing Tai Chi and qigong, endobronchial valves, pulmonary hypertension, and the foundation's Bootcamp — an online pulmonary wellness program that includes exercises, inspirational messages, and seminars. In addition to Greenspan, Mangus, and Debidda, speakers include Eugene Shostak, MD, and Robert Kaner, MD, Weill Cornell Medical Center; Marion Mackles, physical therapist; Donna Frownfelter, Rosalind Franklin University; Steven Nathan, MD, Inova Fairfax Hospital; Kathleen Lindell, PhD, University of Pittsburgh; Donna Wilson, Memorial Sloan-Kettering Cancer Center; Brian Trzaskos, Institute of Rehabilitative Qigong and Tai Chi; and Hooman Poor, MD, and Maria Padilla, MD, of Mount Sinai Medical Center. "People parrot the same material without having an understanding of it," said Greenspan, who was profiled in a feature story last year in BioNews. "They need to hear from people who practice it. And we're always trying to get the top expert in every field who can talk about all the things that people need to know when living with a pulmonary disease." Fewer brick-and-mortar pulmonary care centers exist, Greenspan said. Because of that, many patients don't have access to programs that can give them the information they need to live well. That's where the webinar comes in. "We want to guide people through this minefield of healthcare," said Greenspan, whose ongoing clinical research includes the safety and efficacy of cardiopulmonary rehabilitation in PH. "The worst thing you can do is take away hope. But in the same way people can spiral downhill by doing bad things, by doing good things, they can spiral uphill."  Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d'Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled "Belle of the Concours." × Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d'Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled "Belle of the Concours." Latest Posts  |
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