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Family activities with a health condition

Your chronic health condition may steal your energy, but it shouldn’t rob you of family fun. Jeanette Alston-Watkins was diagnosed with lupus (SLE) when her kids were 11 and 14. Check out this Q&A about activities she enjoyed with them despite SLE. Try some of these with your children or grandchildren over the upcoming holiday break! (Check out more of Jeanette’s story and perspective on parenting with lupus.) What are some activities you did with your kids when you were fatigued or weren’t feeling well? When the kids were growing up and I just was exhausted to the point where I could only make it to the couch, we would play board games, video games or card games. Sometimes, I would make them read to me or I’d read to them. If I was really hurting, I would have them cook for me, and I would watch them add the ingredients. It taught them how to cook, while helping me out without them even realizing. Easy, relaxing things that wouldn’t aggravate any symptoms was the way to go for me. (See some of Jeanette’s favorite recipes that work well with her lupus.) And what kinds of activities did you and your family …

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Advocacy 101: See our new guide!

Interested in getting into advocacy for your health condition community this year? Raising your voice to boost awareness about your condition or the reality of being a patient takes courage. Yet it’s pretty simple to get started with advocacy, so together with members of our Team of Advisors (a team of highly active members and advocates in their condition communities), we’ve put together a new guide called “Advocacy 101.” See/expand and print the guide here! More than 30,000 PatientsLikeMe members indicate that advocacy is one of their interests on their profile. Join PatientsLikeMe or log in now to find and connect with these members here (filter the list to show others with your same condition using the “Condition” search field in the left-side menu). Have any advocacy pointers you’d like to add? Add a comment below or log in to share with the community here!

woman with shopping bags

Gift guide: Gadgets for people with health conditions

Who needs another scarf or coffee mug? With the holiday shopping season upon us, PatientsLikeMe members are crowd-sourcing a list of handy products and tools that can actually help people living with pain, fatigue and other symptoms of chronic illness or aspects of aging. Check out the list below, for starters, and then join PatientsLikeMe or log in to chime in with your own ideas here in our general forum (share your favorite gift ideas with your loved ones who truly want to know what’s on your wish list and what could be helpful for you!). What’s behind this gadget guide/wish list? We were inspired to start this “wish list” because many PatientsLikeMe members have shared in the condition forums which gadgets and products have helped them function a bit better day to day. For example, here’s a peek at items people with Parkinson’s disease and ALS have hailed as helpful in their community forums (join PatientsLikeMe or log in for access to all links): A “rocker knife,” also known as an “ulu” or a “mezzaluna” knife “works great for chopping/slicing veggies, fruits, cheeses, etc.” and a “large-blade pizza cutter is great for cutting pancakes/waffles very quickly,” one member says With a food chopper, like those sold by The Pampered Chef, “I can chop onions, …

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Prevention of Parkinson's Disease - Parkinson's Freezing

Parkinson’s Freezing Triggers and Fall Prevention

Gait freezing and falls are common among people with Parkinson’s disease (PD). Take a closer look at patients’ experiences, common triggers of freezing and tips that may help prevent falls. What is known about freezing and falls? Researchers and movement experts have been studying gait freezing in people with PD for several decades. The exact cause of freezing is unknown, but experts believe it’s caused by PD’s effects on parts of the brain that control motor movement, such as the basal ganglia or part of the right side of the brain. Common triggers of gait freezing may include: Crowded environments or tight spaces Turning corners, going around furniture or objects, or changing direction Entering doorways, crossing over thresholds (especially from outdoors to inside), or changes in flooring (for example, from tile or wood to carpet) Distraction or multi-tasking, such as walking and talking or carrying objects Anxiety (initial research shows that this common symptom in people with PD may play a role in freezing, but further studies are needed) Some tips and tricks may help “thaw” episodes of freezing (but every person is different, so talk with a movement specialist or physical therapist about what might work for you): Visual cues — Giving yourself a visual hint …

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Men's Mental Health - PatientsLikeMe member John films WebMD depression video

Brits are boosting men’s mental health — can the U.S. follow suit?

The British Royals’ passion for improving mental health is giving us all the feels — and possibly helping reduce male suicide rates in the U.K. Who’s raising awareness of men’s mental health in the U.S.? (See how PatientsLikeMe member John, pictured above, is doing his part!) Diverging stats in the U.K. and U.S. The U.K. has been making progress in terms of reducing male suicide rates and the stigma around men’s mental health, thanks in part to Heads Together campaign launched by Prince William, Kate Middleton and Prince Harry in 2016. Each of them have their own areas of focus in mental health advocacy. Kate deserves credit for coming up with the idea to join forces for one major campaign, Prince William says. He and his brother have also been opening up about their grief from losing their mother during their childhood. Unfortunately, U.S. suicide rates (among men and women) have been on the rise, according to the latest CDC report, and stigma still surrounds mental health — especially among men. The American Psychological Association (APA) says that about 6 million American men suffer from depression every year, but men are far less likely than women to seek help for their mental health. U.S. psychology researchers are studying “how …

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Lupus Diagnosis - Lupus Self Test - Hetlana

Lupus Diagnosis and Lupus Self Test: Member Hetlena’s pointers for her old (newbie with SLE) self”

What would someone who has lived with lupus (SLE) for decades tell her younger, newly diagnosed self? PatientsLikeMe member Hetlena (@TheLupusLiar), who was diagnosed with lupus in 1993, recently answered that question for us in the following personal essay reflecting on what she’s learned through the years… “This isn’t the end. There are other things that can give your life meaning.” —Christine Palmer, Dr. Strange (2016 film) In the 2016 movie Dr. Strange, a main character, Christine Palmer, captures how it feels to be confused, frustrated and hopeless – feelings I’m very familiar with because of SLE. The diagnosis of lupus can be mixed with pain, nausea, fever, swelling and all too many other symptoms and ailments combined. From the very beginning, it became more than I could bear – or at least so I thought. I felt targeted all the time. When I reflect on my feelings right after my diagnosis, I remember most of all that I didn’t feel confident. If I knew then what I know now, I would… Question everything There was so much about lupus that I didn’t know about (and years later, there still is). Naturally, a diagnosis or the confirmation of one can come as a …

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5 must-watch TED talks mental health

5 must-watch TED Talks Mental Health

Ever watch TED Talks? TED is a nonprofit “devoted to spreading ideas, usually in the form of short, powerful talks (18 minutes or less).” We’ve rounded up some of the top health-related videos from the TED series (1,700+ talks and counting) that might resonate or give you food for thought. Phil Hansen – “Embrace the shake” Hansen developed a hand tremor in art school and thought he might need to abandon his passion. His neurologist, however, encouraged him to “embrace the shake.” While he could no longer make the art the same way (pointillist drawings), he found some new media for making art (like… hamburger grease paintings) and learned that “embracing a limitation could actually drive creativity.” Notable quote: “Instead of telling each other to seize the day, maybe we can remind ourselves every day to seize the limitation.” Amy Mullins – “The opportunity of adversity” The definition of “disabled” disturbs Mullins, who’s a double-amputee because she was born without shinbones. Every person will face adversity, and society’s preconceived notions about “disabilities” or differences or ailments aren’t doing us any favors, she argues. What if they are a source of strength? Notable quote: “Perhaps until we’re tested, we don’t know what we’re made of. …

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cancer patients chair yoga

Ommm: People with cancer practice chair yoga for bone benefits

Chemotherapy and other cancer treatments can take a toll on your bones and overall strength, so some patients are turning to chair yoga to boost their bone health and balance. Things like bone health ‘seemed trivial compared to cancer’ We heard about chair yoga in this New York Times article, “Chair yoga for my funny bones.” The author, Susan Gubar, began practicing chair yoga after she recovered from a fractured pelvis following years of ovarian cancer treatment. “I had no idea that cancer treatments put patients at risk for osteoporosis,” says Gubar, whose treatment included chemotherapy, radiation and steroids. A new diagnosis of osteoporosis and a vitamin D deficiency “made me realize how often I ignore health issues because they seem trivial compared to the mortal threat of cancer. Stress tests, dental work, cholesterol checks: who cares? Just dealing with cancer had been enough for me. Clearly that had to change.” Gubar says she used to love walking but says she gave it up because she now walks stooped-over with a walker and has neuropathy in her feet (also from chemo). Her physical therapist and a friend from her cancer support group urged her to try chair yoga – now she’s hooked. Small studies have …

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doctor holds vote pin

Healthcare = hot election topic. Check out some Election Day basics

Ready to cast your ballot? Election Day is almost here and recent polls show that healthcare is one of the top issues on voters’ minds. Here’s some quick election-related info for you. Election Day and voting basics – Tomorrow (November 6, 2018) is a general election for most states, except Louisiana (where November 6 is a primary and December 8 is a runoff general election). You can search for your polling place here. Learn more about voting in general, as well as voter accessibility laws for seniors and people with disabilities, and absentee voting info for military families and overseas U.S. citizens. Seats up for grabs – Candidates are vying for all 435 seats in the U.S. House of Representatives, 35 (of 100 total) U.S. Senate seats, 39 governor spots, and a number of state and local public offices. See who’s running for Congress in your state, and look into their stance on healthcare and other issues that matter to you. Pre-existing conditions=top issue – A spring 2018 poll by the Kaiser Family Foundation (KFF) found that healthcare was a top issue for 22 percent of registered voters. More recently, a September poll found that healthcare is a top issue for 27 percent of voters. “KFF polling continues to find pre-existing conditions as a widespread concern and with the impending lawsuit …

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