2020: A New Vision of the World

2020: A New Vision of the World

We are in the first quarter of the year and none of us expected or envisioned that we would be dealing with the course of events happening now. It is almost surreal, like a scene from a movie. Many people entered the new year with the desire of having new goals, resolutions, and dreams. This was to be the year signifying “2020 Vision” seeing things more clearly. Everyone stated “this is going to be my year.” What we are going through now has been a real eye-opening experience.

Over the course of history there have been many epidemics, disasters, and social issues, which were usually contained in one region. People may have felt safe thinking, “it is not happening in my city, state or my area of the country.” These past three months, the “Coronavirus pandemic” has affected all U.S. states and multiple countries, and crossed every race, age, and socioeconomic group. This blog is not going to be filled with statistics, because we are bombarded daily from all media sources with the data. Updated information should be obtained from reliable sources such as the CDC (www.cdc.gov) or WHO (www.who.int).

This “global shutdown” has affected every aspect of human life. Freedom and things that we took for granted, such as shopping, going to the movies, dining out, visiting amusement parks, playgrounds, attending concerts, festivals, hanging out with friends and family, and most of all traveling has been brought to a screeching halt. Now families are going to have to learn how to spend more time with their families, reflecting on things to be thankful for and creating entertainment and meals at home.

For safety, government officials have issued “Stay at home” and “Lockdown” mandates, limiting travel for only essential needs. The goal is to try to decrease the spread of the virus, especially to vulnerable populations; hence a new term has been coined “social distancing.” Everyone is to keep a 6-ft distance from each other and limit gatherings of people to 10 or less. Social distancing is a physical separation and does not mean that you cannot communicate with others. The one positive note is that in this age of technology we all can stay connected to others whether they are in the same city or across the country.

Social distancing is important, but there are two populations that this may have an adverse effect on, those with mental illness and those that are in abusive relationships or families. Social distancing could cause “social isolation” and those with depression could have an increased risk of suicide. The worst thing is having individuals quarantined in the home with their abusers. If you know anyone that is in an abusive situation or has mental health issues, reach out to them, if possible.

We are not sure when this pandemic will come to an end, so during this time find ways to decrease your anxiety and stress and try not to panic. Some things that you can do is continue to exercise, keep your humor (in light of what’s going on), watch movies, create crafts and cook together, and make sure to reach out to those that may be alone.

May this pandemic not dim our vision. Stay calm, stay focused and productive.

Resources:

SONSIEL Issues National Call-to-Action for Protective Equipment Inventory Donations

SONSIEL Issues National Call-to-Action for Protective Equipment Inventory Donations

In rapid response to the national emergency and to better combat COVID-19, the Society of Nurse Scientists Innovators Entrepreneurs & Leaders (SONSIEL) launched an immediate national call-to-action requesting that non-hospital inventories of personal protective equipment (PPE) be shared with hospital and healthcare facilities via community dialogue.

The call-to-action, deemed SHARE (Strengthen Healthcare Ability to Respond to Emergencies), seeks to quickly raise awareness about the need for PPE on the front lines of care, and to spur, at the grassroots level, an immediate community dialogue regarding available supplies of urgently needed equipment.

Non-hospital healthcare organizations and commercial businesses use PPE and other needed equipment in day-to-day activities. Nursing and medical schools, pharmaceutical labs, veterinarians, dentists, and simulation centers, even construction, cleaning, and landscaping companies, may have PPE access and inventory.

SONSIEL is asking hospital and healthcare facilities to look to these other entities for possible additional supply in order to help keep staff caring for COVID-19 patients and the patients themselves safe. The type of equipment needed, that commonly is used by other entities and in other industries, includes respirator masks, eyewear (goggles, shields, visors), and gloves (latex, latex-tipped, protective). Non-hospital healthcare providers also may have available inventories of gowns, caps, or other items.

Remarked Rebecca C. Love, SONSIEL President & Co-Founder, “Today, as this COVID-19 crisis unfolds, we’re launching a grassroots campaign, SHARE, to help ensure adequate supplies of equipment are available to healthcare workers tending to our most vulnerable population. At this time, many of our hospitals are facing a critical shortage of protective equipment; there are not enough gloves, masks, or gowns to safeguard our frontline healthcare workers. Healthcare workers must be protected—to enable them to continue to provide care, for their own well-being, and to prevent transmission to others. At present, there is this global shortage of equipment, a several-month delay, however we believe SHARE is an innovative, community-based solution that can help swiftly back-fill this temporary deficiency.”

“Please join SONSIEL in this vital effort. We are asking you and everyone across the country to get out the word and start a dialogue. Think innovatively about where appropriate and needed supplies might be found to SHARE. If you’re a business or scholastic institution, please consider how donations of any already available PPE within a community might help your local hospitals and healthcare providers. While particular region and facility needs may differ, coming together, directly, in a conversation, locally, helps all of our communities target, identify, and triage supplies and equipment, so that what is in stock is made available to healthcare providers as soon as possible.”

Ms. Love concluded, “I’d like to thank the entire SONSIEL Board of Directors, who acted quickly and completely in supporting this initiative at a critical point in time. Together, I know we will get through this challenge, all of us, one community at a time.”

Northeastern University and Massachusetts General Hospital are the first to engage in SHARE. SONSIEL hopes many organizations, businesses, and hospitals around the country will do the same.

For information on SHARE, visit https://sonsiel.org/coronavirus.

To donate to their GoFundMe campaign, visit https://www.gofundme.com/f/nurses-ppe-supplies.

Operation Smile: Bringing Happiness Worldwide

Operation Smile: Bringing Happiness Worldwide

For Sally Herman, RN, nursing was a calling. Having been born with a crossed-eye that required a number of surgeries at different hospitals in a few states, Herman had spent her childhood being bullied. She became a nurse, as she had hoped, and shortly after she graduated from school, she saw commercials for Operation Smile.

She knew she had to help, as she didn’t want other children to suffer like she did. She recently returned from her 50th medical mission with the organization, having spent 20 years as a volunteer. Today, she’s their clinical coordinator and is still moved by the group’s results.

“My first trip was to Nairobi, Kenya. I was working as a Recovery Nurse for the team. I was hooked as soon as the surgical team placed a child who had his cleft lip repaired, and I got to place the baby in her mother’s arms. The tears of that mother will stay with me forever,” recalls Herman. “I knew this is what I wanted more than my life itself. The redemption moment of child reuniting with her parents, repaired and opening up school opportunities, job opportunities and marriage—a world that child would have never seen, if Operation Smile would not have stepped in! I was hooked and never looked back. I still cry at that very moment, every time.”

Herman explains that “Operation Smile is a nonprofit organization that joins together with other countries in the treatment of cleft lips and cleft palates that occur in their countries. Many of the countries do not have access to safe surgery or the people who know how to do it. Our goal is to get rid of all clefts and teach a country how to meet their surgical needs for those children and adults suffering,” she says.

If you’re interested in becoming involved with Operation Smile, Herman says that you begin by submitting an application. To work as a volunteer nurse, you need to have PALS and CPR certification as well as pediatric experience. You will also need to have specific skills, depending on the area you want to volunteer in: they have pre and post op nurses, recovery room nurses, and OR nurses. If you want to volunteer, but don’t have the skill set, you can volunteer helping with medical records or with photography.

“For whatever area you get accepted in by your application, you will receive training on how the mission works and your roles and responsibilities,” says Herman.

As the Clinical Coordinator, Herman organizes the team on the ground, and she makes sure that all the nurses know their jobs and that every area is set up correctly to standard. She also screens all the patients on screening days, and works with the team leader surgeon, pediatrician, and anesthesia, they decide which patients that are able to operate on and which they can’t.

During their surgery week, she organizes patient flow to and from OR, RR, and post-op. She is also available for every emergency.

“I love this position so much as I get to be involved with the families and my team equally,” says Herman. “The one thing that constantly unites us as a team are those children. We are seriously giving them a future.”

Herman says that people may wonder why she does all this work for free and uses her vacation time to do so. “I have been to about every country in the world and even was inspired to start a feeding program in South Africa from my experiences,” she says, “It restores humanity to your life; it builds compassion and brings nursing to its real roots.”

If you’re thinking about becoming involved with Operation Smile, Herman says that you should do it. “It will be the most inspiring work you could ever do,” she says. “It is their smiles that keep me going back.

To learn more, visit www.OperationSmile.org.

Colonoscopies Help Detect Deadly Colon Cancer

Colonoscopies Help Detect Deadly Colon Cancer

Of all the cancer screenings people have routine access to, the colonoscopy seems to be the one most maligned. And while it’s certainly inconvenient and is a long process, it’s also one of the best tools for early detection and even prevention of colorectal cancers.

For the past 21 years, March has been designated as Colorectal Cancer Awareness Month to raise awareness about the disease and to give survivors and those whose lives have been touched by colorectal cancer a voice.

Screening for colorectal cancer is more complicated than a blood draw, but the test can actually detect abnormal cells that can eventually become cancer. Those abnormal cells and polyps can be removed during the procedure, thereby often preventing the disease from becoming malignant and spreading.

Despite a colonoscopy’s inconvenience, the payback is enormous. According to the American Cancer Society, patients whose cancer is detected early, or as a pre-cancer, generally have more treatment options available to them. Because colorectal cancer is the second leading deadly cancer of men and women, colonoscopies save lives.

This month, be sure to remind your patients about the importance of this screening test. Each patient is different, but these guidelines supplied by the Colorectal Cancer Alliance can help people understand when they should start testing.

  • Are you experiencing symptoms?
    • Talk to your doctor immediately
  • Do you have a family history of colorectal cancer or polyps?
    • Get screened at age 40 or 10 years before the age of the youngest case in your immediate family (mother, father, sister, brother)
  • Are you African American?
    • Get screened beginning at age 45
  • Do you have a genetic link to colorectal cancer such as Lynch Syndrome, FAP, etc.?
    • Family members who tested positive for a relevant mutation(s) should start colonoscopy screening during their early 20s, or 2 to 5 years younger than the youngest person in the family with a diagnosis, and repeat it every 1-2 years.
      Family members who have not been tested yet should be screened during their early 20s, or 2 to 5 years younger than the youngest person in the family with a diagnosis.
  • Do you have a personal history of cancer?
    • Talk to your doctor and get screened before age 45
  • Do you have ulcerative colitis, inflammatory bowel disease, or Crohn’s disease?
    • Talk to your doctor about getting screened before age 45

Educating patients about this cancer can motivate them to get screened for the first time or to keep up with a screening plan already in place. The organization Fight Colorectal Cancer has some excellent tips that can help with the colonoscopy prep. Some people are surprised to find out they can make the preparation of emptying their bowels easier if they start modifying their diet a week before the colonoscopy. Avoid lots of fiber-rich foods for that week—like raw fruits and vegetables, high-fiber cereal or whole grain breads—means there’s less to clean out when it’s time to completely empty the bowels for the colonoscopy prep. And anything that makes the test easier makes people less likely to avoid doing it.

Remind your patients, friends, and family members about the importance of getting colonoscopies when they are recommended. That one test could save their lives.

Weight Management for Nurses: The Why’s and How’s of Losing or Maintaining Weight

Weight Management for Nurses: The Why’s and How’s of Losing or Maintaining Weight

weight management

As you well know, America is in the grips of an obesity epidemic. According to the National Institute of Diabetes and Digestive and Kidney Diseases, over 70% of adults are considered overweight or obese, which is associated with multiple medical conditions. Nurses, as role models, advocates, and educators, are poised to make a difference in reversing this trend.

Unfortunately, nurses are not immune to weight problems themselves. In fact, research suggests the rate of overweight and obesity within the profession is on par with the general working-age population.

Here nurses and wellness professionals offer savvy advice for managing weight and fitness.  Even for those working long, stressful, rotating or night shifts that offer few healthy food and exercise options.

Becoming a Healthy Role Model    

Many nurses feel hypocritical telling patients to exercise and eat right if it’s obvious that they don’t walk the talk. Maybe that’s one of the reasons nurses enjoy a stellar reputation for honesty and trustworthiness, according to annual Gallup polls.

Yes, nurses are role models for patients, but there’s another professional reason to take care of one’s weight and fitness—the health and longevity of your career. The American Nurses Association Code of Ethics for Nurses includes several mentions of the importance of self-care (e.g., “The nurse owes the same duties to self as others”).

Nurses Helping Nurses

Many nurses know about the power of a group for establishing healthier habits like eating better and moving more. Most of those groups are comprised of people from all walks of life. But you may find there’s even more power in teaming up with fellow nurses who understand the struggle, especially if they’ll be around regularly to hold each other accountable.

Victoria Randle, MSN, NP-C, is a family nurse practitioner in the Atlanta area and cofounder of Nurses 4Ever Fit. Since January of 2018, the organization has held monthly in-person events at venues such as a nurse-owned yoga studio. “We all have a special bond that only another nurse can understand. It’s a platform for like-minded individuals to talk together, it’s a form of therapy, a form of camaraderie, and you can get your fitness in,” she explains.

Randle says the emphasis is on fitness, rather than diet, because “I see a lot of nurses who are vegan, for instance, and they don’t seem healthy. The element that’s missing is movement. When you’re 90 and you don’t have good muscle tone or you have brittle bones, that’s not healthy.”

Also, many women say they are “fearful of going to a gym because ‘I’m afraid people will look at me and judge me’ but here we’re all learning, and it’s a judgement-free zone,” she adds.

Saturday morning fitness sessions are only part of the Nurses 4Ever Fit experience. “We’re going to do an annual retreat. We take a weekend away and it’s a form of therapy. It includes a massage or a hot tub together,” she explains.  “Exercise is good, but it’s not everyone’s idea of self-care. The nature of a nurse is to care for others and put the patient first. So, when it comes time to care for yourself, you don’t have much left. That is embedded in you—the workplace culture needs to change. Nursing school actually taught that if you get a 30-minute break in a 12-hour day, you’re lucky!”

Healthy Workplaces Equal Healthy Nurses

Some hospital systems have started programs to ensure that healthy food and fitness opportunities are available to their nursing staff.

MD Anderson Cancer Center in Houston, Texas, is lauded as an outstanding example of a wellness workplace. Evan Lee Thoman, MS, PMP, CWP, wellness specialist in the HR Wellness and Recognition unit has been in health promotion field for 13 years.

He works to find out what other employers at other top hospitals and universities are doing to engage employees toward a healthier lifestyle. And he investigates what his own hospital’s employees want before offering up a range of at-work health initiatives.

“The program is different for every unit. I go in and have a conversation with the leadership and we may do a needs and interest survey. We’re asking: ‘What do nurses need?’,” Thoman says. For instance, “we had many questions in one unit regarding how to make use of dental insurance. Who would not have guessed that medical consumer information was a top concern?”

But it was, so the wellness department set up a program to fill the knowledge gap. They aim to provide education and services to every shift ranging from an on-site fitness center and gym membership to ergonomic assessments and resources to address compassion fatigue, resiliency, and spiritual care.

Workplace leadership that buys into a wellness culture will reinforce the healthy behaviors that nurses must adopt. Thoman helps nurses to create those wellness habits, without overwhelming them. He asks them: “Who’s going to be your support system? Who’s going to hold you accountable?” The wellness team is there, of course, but so are fellow nurses and nurse leaders. “We get the best results and greatest engagement when we have a leader who walks the talk,” he says.

For example, nurses are notorious for neglecting to take meal or water breaks. “If you eat lunch it’s almost like you’re the weak one on the unit,” he says. “We’d been talking to nurses about planning their meals but then we thought, maybe we can bring something to the nurses. So now we try to take snacks to each department—‘Here’s a little something, a granola bar or piece of fruit, to fuel you during the day.’ We also stress micro breaks and encourage them to find five minute for a snack, go for water.”

When overworked and overstressed nurses complain that they don’t have time to take care of themselves, Thoman suggests gardening, journaling, or even coloring as a way to decompress.

Because nursing is a predominantly female occupation, Thoman notes that rest and relaxation may be difficult for women who do double-duty as caretakers at work and at home. Then there are the biological factors that may hamper a woman’s weight management efforts.

“From a weight-loss perspective, men tend to have more lean muscle than women, which burns more calories than body fat at rest, so, at the onset, men may lose weight a little faster,” explains Thoman, who was previously a university strength and conditioning coach.

Exercise Early, Exercise Often

Cara Sevier, RN, codeveloper of Nurses 4Ever Fit and the CEO of Cara Sevier Industries in the Atlanta area, knows that exercise isn’t always convenient for busy nurses working crazy shifts or living in extreme weather zones.

When nurses tell her that they have difficulty finding time to exercise, she asks them to challenge that belief. Even nurses with legitimate time constraints, such as parents of young children. “They call it a time barrier or challenge, but we say it’s a self-care issue; they feel guilt over finally taking care of themselves first,” she says.

Sevier has personally experienced that challenge and now meets it by waking up at 3:00 a.m. to drive to a gym 30 minutes away. Though the gym is open only Monday through Friday, she maintains her schedule seven days a week. “I found out I had to be consistent or I was thrown off. It gives you a peace in your body that you’re doing something for yourself—getting up at 3:00 a.m. for a 4:00 a.m. class,” she explains. “It takes discipline, forcing yourself, forcing my body to get to my highest physical self. On the weekend, I will find a cycle class or something else to do. Is it easy? No. It’s a lot of sacrifice, but it’s worth it.”

On the other hand, we do need adequate sleep to stay slim—and to stay sane. One study at Columbia University suggests that getting less than four hours of sleep a night could raise your obesity risk by an astonishing 73%. (Seven hours a night is the sweet spot.) Nurses who work overnight or pull 12-hour shifts are also at greater risk for weight gain, according to a University of Maryland study. Scientists suspect that when circadian rhythms get thrown out of whack, so do hunger and fat hormones, which results in excess pounds. Or perhaps lifestyle factors lead tired nurses working off-hours to make poor food choices and avoid exertion.

Become a Healthy Living Warrior

Uniqua Smith, PhD, MBA, RN, NE-BC, associate director of nursing programs at MD Anderson Cancer Center, slowly gained weight after transitioning to an administrative role. But with the help of a fitness boot camp and workplace wellness challenges, she started making healthier food choices and exercising consistently.

“On Sunday, you had to send in a picture of all the groceries you just bought—to show that there are no snacks, no high-sugar foods,” she explains about a challenge with friends, using a social media app for accountability. “For the weekly weigh-in, you had to take a picture of your feet on the scale.”

“Workplace weight loss challenges, like the March Madness challenge, keep you going when you have a month-long goal,” Smith explains. “You’re also motivated because you don’t want to let your team down.”

A little over a year later, she’d lost 40 pounds through calorie-cutting, portion control, and cardio exercise. Only 10 more pounds to reach her goal weight, but then came a diagnosis of breast cancer.

“I truly believe everything happens for a reason: 2017 was about getting myself together health wise,” she says. “It got me ready for 2018, when I had to fight for my life. It gave me the strength to fight cancer.”

After six months of chemotherapy, she underwent three separate surgeries over the next several months.

“I went through 16 cycles of two different types of chemotherapy. It takes a big toll on someone—I lost my taste buds and energy,” she says. “It took me literally an hour to take a shower, which before that took 10 minutes.”

She started exercising again slowly, at the beginning of 2019, after the last of her surgeries. From walking to running and then completing a 5K, she challenged herself to get to her previous state of fitness.

Smith is now a healthy living spokesperson and encourages everyone to eat clean and condition their bodies so they’re strong enough to fight any disease that comes their way.

Don’t Fool Yourself

For many nurses, weight gain happens slowly, and they may not even notice it at first. Or they have a pattern of yo-yo weight loss and gain, with pregnancy, holidays, or shift work.

Sevier knows what that’s like. “Even at my highest weight—I reached 188 lbs—I told myself every story in the book. ‘Maybe these scrubs had shrunk in the hot water. Oh, wait, is this the U.S. size or the European size?” But those excuses didn’t hold up under examination and soon she started working out with a trainer at a gym. “Now scrubs that were once tight on me are loose,” she adds.

Though it may be painful to face facts, research shows that being aware of and tracking certain behaviors can help drive healthy habits. A daily food log, whether paper or digital, can help some people to lose weight or keep it off. You can’t argue with the truth, when it’s detailed right in front of you, in black and white.

Feed Yourself Healthy Meals, Healthy Snacks

If you’re like most nurses, you struggle to plan, shop, and cook yourself nutritious meals and snacks. Regular meals may go out the window, replaced by chaotic eating habits. But simple meal planning strategies can help nurses to eat well.

Tiambe Kuykendall, BSN, RN, a clinical nurse at MD Anderson Cancer Center, does everything she can to fight off chaotic eating. “I work in pediatrics and our [patients’] parents want to feed us all the time. Nobody ever buys us a fruit basket, though we would enjoy it,” she notes. “I’ve realized that I have to pack a healthy snack to make sure there is one at work.”

But desserts, junk food, and other caloric gifts and treats aren’t the only landmines threatening your waistline at most nurses’ stations. “In my unit, someone will bake chocolate chip cookies two or three times a shift. We’re surrounded with unhealthy snacks—chocolate, cookies, chips, pizza, and other junk,” she explains. “But the wellness department brings snacks on a weekly basis—granola bars, bananas, apples, and popcorn. When everyone is trying to be healthy it makes it so much easier.”

Kuykendall notes that when she works out in the morning, her level of energy is much higher later. She’s made other changes in the a.m., too: “I don’t drink energy drinks anymore, just green tea in the morning before I go to work, and sometimes in the afternoon.”

She avoids the cafeteria even though there are healthy food options there. “We have a 30-minute lunch break and MD Anderson is huge, so the cafeteria lines are long,” she says. “Yesterday I planned meals for the next three days and will bring my own lunch and snacks. You can make small changes, like eating grapes instead of candy. I don’t advise that you deny yourself all the time, but indulging should not be the norm.”

Ditch Dieting in Favor of Mindful Eating

Most nurses are familiar with programs such as Weight Watchers, and in fact, some hospitals hold on-site meetings. But there’s been a nationwide shift in attitudes away from dieting and toward a focus on healthy living. Mindful eating is one such approach.

“We don’t promote any particular diet, or if you don’t follow a diet, we want to teach people to simply be aware of why they eat,” explains Mark Mitchnick, MD, CEO of MindSciences, Inc, a New York City developer of digital therapeutics apps. “Right now, it’s keto, but we don’t want to chase fads.” The company’s Eat Right Now app teaches users about the habit loop and how to navigate triggers to eating.

Most of us eat for a variety of reasons, most often the trigger doesn’t have anything to do with physical cues. “Sometimes it’s that you’re hungry, and sometimes it’s that you’re stressed, or you’re tired, or it’s a fight with your significant other,” Mitchnick says. “You can learn to separate the trigger from inappropriate behaviors and do something more productive. If you’re stressed about an upcoming test, study, don’t eat.”

The app helps people to break the habit loop through educational content in a highly sequenced series of 28 modules. It’s constructed to deliver a module a day, which takes only eight minutes, and which can be repeated as desired. A user can also access lessons when on a just in time basis. When feeling a craving, they can bring up a short series of questions to help shape their response to it.

A scientific study showed a 40% reduction in craving-related eating—eating for reasons other than hunger—after use of the app.

In addition to the mindful eating app, there is one to relieve anxiety and one for smoking cessation. “A lot of behavior people would like to change in a high-stress field like health care—smoking and eating—is actually stress-related. Ask yourself: ‘Do I have an eating issue or an anxiety issue?’,” Mitchnick  advises.

It’s not easy for nurses to stay slim, but it’s worth doing. Shift work, long hours, sedentary lifestyle, heavy lifting, high stress, and fatigue can be overcome with a mindful approach.

The “Do Tell” Your Doctor Tool Helps Parkinson’s Patients

The “Do Tell” Your Doctor Tool Helps Parkinson’s Patients

While Parkinson’s can be a difficult disease for many patients to deal with, there’s now a new online tool that can help them initiate helpful—and in fact, crucial—dialogue with their health care workers.

We spoke with Karen Jaffe, MD, co-founder and vice president of InMotion, a community center for people with Parkinson’s and other movement disorders. A retired OB/GYN physician, Jaffe was diagnosed with Parkinson’s in 2007. She gave us important information that nurses need to know about the “Do Tell” Your Doctor Tool.

What is the “Do Tell” Your Doctor Tool, why was it created, and how does it work?

Sample word cloud, as delivered via email upon completion of the “Do Tell” Your Doctor Tool

The “Do Tell” Your Doctor Tool aims to improve communication around “off periods” between people with Parkinson’s and their doctors. “Off periods” are the re-emergence of Parkinson’s symptoms, which can be hard to identify because they differ for each person and sometimes from day-to-day. These factors can make it difficult for people with Parkinson’s to communicate about their symptoms with their family, friends, and health care professionals.

The tool is based on a clinically validated questionnaire developed by Duke University, called the Wearing-off Questionnaire 9 (WOQ-9). Users review nine Parkinson’s symptoms and rank how bothersome each symptom is (for example, “Very Bothersome,” “Bothersome” and “Somewhat Bothersome”). After completing the questionnaire, users will receive a customized word cloud via email that visually displays the symptoms they chose, with the largest words depicting the most bothersome symptoms. They can then bring these results to their next doctor’s appointment to help guide and prioritize the discussion about their Parkinson’s symptoms.

As part of the “Live Well. Do Tell.” steering committee, my organization, InMotion, had the opportunity to participate in beta testing for the tool to ensure that it’s user-friendly.

What do nurses need to know about it?

People with Parkinson’s who experience “off periods” may not discuss their symptoms or communicate the impact to their health care professionals, as they may believe that the re-emergence of symptoms is just part of their condition, or they may rationalize the impact because they fear it signals their condition is progressing. The intent of the tool is to initiate better dialogue between people with Parkinson’s and their health care professionals about their symptoms and about “off periods.”

How can they utilize this tool or recommend that their patients use it?

If patients are having a hard time talking about their symptoms, pointing them to this tool may provide them and their care partners with a guide to recognizing and recording symptoms that may be overlooked.

The tool is an easy online resource that people with Parkinson’s can use in advance of their doctor’s appointments. With the resulting word cloud shared via email, they’ll be armed with an actionable item they can share with their health care providers, who can in turn help them better manage their Parkinson’s symptoms to live well.

Why is it important for this tool to exist? What does it provide that is new?

Many factors make it difficult for people with Parkinson’s and their care partners to distinguish their most bothersome symptoms, and many often have a hard time articulating the impact of their symptoms during a doctor’s appointment.

The “Do Tell” Your Doctor Tool can impact the care people with Parkinson’s may receive—offering a visual guide that helps to recognize and record a person’s bothersome symptoms and providing a resource they can bring to their next doctor’s appointment to spark discussion and lead to more effective communication.

The need for this kind of tool was first identified in the “Live Well. Do Tell.” Statement of Need, which serves as the foundation of the initiative and outlined actions for the Parkinson’s community to help identify and communicate about “off periods.” The Statement of Need was developed based on learnings and insights from a multidisciplinary steering committee of leaders in the Parkinson’s community who collaborated to discuss unmet needs in understanding and communicating about Parkinson’s symptoms.

The “Do Tell” Your Doctor Tool is available online at LiveWellDoTell.org/takeaction.