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“In Claire fashion”: Claire Wineland + organ donation with a health condition

Claire Wineland — an author, inspirational speaker and social media star with cystic fibrosis — died last month at age 21 following a lung transplant. “In Claire fashion, she is an organ donor,” her family shared, noting that her kidneys helped save two people. Learn more about Claire and organ donation with a health condition. (Photo: Claire’s Place Foundation) Claire’s life and mission Claire was born with cystic fibrosis (CF), a rare genetic condition that causes a buildup of thick mucus in the lungs, pancreas, and other organs. After surviving a 16-day coma at age 13, she started a nonprofit called the Claire’s Place Foundation to help provide emotional and financial support for others with CF and their families. In high school, Claire began sharing about her life and her condition in YouTube videos, on social media and through speaking engagements (including TEDx). She won several awards for her role as an activist, including a Teen Choice Award, the Gloria Barron Prize for Young Heroes, and Glamour Magazine’s College Woman of the Year. “She’s on a mission to normalize sickness, push back at those who pity her and have a meaningful life for however long it lasts,” CNN said in a 2017 profile of Claire. “The …

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Driving with Parkinson’s disease: Safety considerations + turning over the keys

Are you still driving with Parkinson’s disease? Check out some safety considerations and pointers for determining if it’s time to turn over the keys. Plus, explore how others with PD have handled this tricky topic and see some alternate ways of getting around. Considerations for driving with PD + 7 questions to ask yourself “You will likely be able to drive safely and legally for several years, depending on your age and general physical condition,” according to the Michael J. Fox Foundation. “However, Parkinson’s disease eventually affects reaction time, ability to handle multiple tasks, vision and judgment.” Everyone with PD is living with their own mix of motor and non-motor symptoms, rate of disease progression, and reaction to medication (such as levodopa “ons and offs”) — all of which can affect driving abilities. There are currently no set guidelines for neurologists to determine someone’s fitness to drive, so doctors consider patients’ skills and symptoms on a case-by-case basis, according to ParkinsonsDisease.net. They recommend considering these questions to help determine if you’re still fit to drive: How is my vision? Can I see well at night? Can I distinguish colors, such as in traffic lights? Would I be putting my passenger (friend or loved …

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Getting back in the groove — 5 hacks + hints for routines that work

Even if you haven’t been a student for several years, back-to-school season feels like the time to get back into a routine. What’s involved in a good routine? And what are the potential health perks of a basic regimen? See what the research shows, and join PatientsLikeMe to swap ideas with other members in this forum chat. How can routines help? In the business world, countless books and blog posts have touted the importance of routines when you want to succeed. Many PatientsLikeMe members have talked about the value of routines in coping with a health condition (log in and check out thousands of mentions of “routines” in the forums). “For me, having a routine with a chronic condition is a must,” says one member with fibromyalgia. “I don’t have to think what I have to do, it is already in my routine.” Health-wise, having a regimen can help people of all ages. Studies of preschoolers have shown that family routines (with regulated meals, bedtime and screen time) may improve kids’ emotional health and reduce the risk of obesity. Johns Hopkins Medicine reports that healthy habits and routines help older people, as well. See their seven-year study of people ages 44 to 84 who significantly reduced their heart-health risks by adopting …

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“Breaking up” with a doctor after 14 years — Bernadette’s journey to better care

PatientsLikeMe member Bernadette (yellsea), who’s on the 2018 Team of Advisors, has been living with Parkinson’s disease (PD) since 2002. She recently filled us in about switching specialists after more than a decade with the same neurologist, and advocating for herself after enough “red flags” popped up in her interactions with that physician. Out with the old Bernadette lives in remote area in the Great Lakes Region of New York. The first PD symptom she noticed was her handwriting getting small (a common early symptom of PD known as micrographia) — and her first doctor dismissed it as “writer’s cramp.” When she began having tremors in her hand, she started seeing a neurologist with a strong reputation in Syracuse, about a 40 minute drive from her home. “He’s very well-respected in the area,” she says. “In fact, a lot of the [other] doctors won’t step on his toes.” Bernadette was experiencing serious side effects with some of her PD medications — including compulsive gambling out of the blue (a reported side effect of Mirapex) — but her neurologist asked her very few questions about how she was feeling, and never raised the topic of side effects. “My husband didn’t like him,” Bernadette says of her …

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Parkisnon's Speech

Let’s talk: Parkinson’s disease, speech changes + communication issues

Parkinson’s disease can cause your voice to become raspy, quiet or unsteady, and motor symptoms can make writing and typing more difficult. Have you experienced communication issues like these? See what others have tried — from Lee Silverman Voice Treatment and voice-activated “smart” devices to (drumroll please…) singing classes. How PD can impact communication Parkinson’s affects the part of the brain and nerves that control speech and oral/facial movement. ParkinsonsDisease.net says PD may cause: Softer, breathy, or hoarse voice Slurred speech Mumbling or rapid speech Monotone voice, lacking the normal ups and downs Slower speech because of difficulty finding the right words Trouble participating in fast-paced conversations. They also break down the medical terms related to these speech symptoms: Dysarthria — A motor speech disorder or impairment in speaking due to PD affecting the muscles required for speech Hypophonia — Soft speech or an abnormally weak voice caused by the weakening muscles Tachyphemia — Also known as “cluttering,” this is characterized by excessively fast talking and rapid stammering that can be difficult to understand In addition, people with PD may experience tremor, rigidity and dystonia or cramping, which can make writing and typing difficult. Research has shown that about half of people with PD have micrographia (small, cramped handwriting). Treatments …

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Epidiolex: First FDA-approved drug made from cannabis component (CBD)

Epidiolex: First FDA-approved drug made from cannabis component (CBD)

In a historic move, the U.S. Food and Drug Administration (FDA) recently approved Epidiolex — an epilepsy medication made from purified cannabidiol (CBD), found in cannabis. Read all about it and what it could mean for the future of cannabis-based treatments. As background, see these other recent write-ups we’ve done on medical cannabis/marijuana and CBD. What is Epidiolex? Epidiolex “is a liquid formulation of pure plant-derived cannabidiol as a treatment for various orphan pediatric epilepsy syndromes,” according to GW Pharmaceuticals, the U.K.-based company that markets the medication (an oral solution). Some other info to keep in mind: Limited scope of approval — The FDA approved the treatment specifically for two rare and severe forms of child-onset epilepsy — Lennox-Gastaut syndrome and Dravet syndrome — in patients 2 years of age and older. No THC — Epidiolex is made from purified CBD and does not contain tetrahydrocannabinol (THC), the component of marijuana that causes a euphoric “high.” Thorough research — Researchers studied the treatment’s effectiveness in three randomized, double-blind, placebo-controlled clinical trials involving 516 patients. Epidiolex (taken along with other medications) helped reduce the frequency of seizures when compared with a placebo. Research by DailyCBD.com also found the medication has a very low potential for abuse. Side effects — The FDA says …

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Selfcare

It’s Self-Care Day! 7 “pillars” for taking care of you

Today is International Self-Care Day. There’s even a Senate resolution designating July 24 as a day to recognize the importance of self-care in the U.S. (it’s on 7/24 because, ideally, it should be a focus 24/7 for everyone). Has your self-care — from diet and hydration to hygiene and hobbies — been slipping because of competing priorities? Bring it back into focus with these “seven pillars” recommended by health care experts – plus some easy TLC ideas from your fellow member, Laura. What are the “7 pillars”? The International Self-Care Foundation has developed what it considers The Seven Pillars of Self-Care: Pillar 1 – Knowledge and health literacy: Finding health information and ways to understand it so you can make appropriate health decisions Pillar 2 – Mental well-being, self-awareness and agency: Getting health care screenings; “knowing your numbers” for important stats like body mass index (BMI), cholesterol and blood pressure; and keeping tabs on your mental health Pillar 3 – Physical activity: Staying as fit as possible (talk with your doctor about a healthy exercise plan that works with your condition) Pillar 4 – Health eating: Keeping a nutritious, balanced diet Pillar 5 – Risk avoidance or mitigation: Quitting tobacco, limiting alcohol use, getting vaccinated, practicing safe sex and …

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Cannabis for PD treatment? Member Ian says it’s something to shout about

Member Ian (Selfbuilder) blogs and vlogs about using cannabis products to treat his Parkinson’s disease symptoms, even though marijuana (including medical marijuana) is illegal and stigmatized where he lives in the U.K. Why is he speaking up? “I know that I would not be here now if it wasn’t for the relief provided by my medicinal cannabis,” he says. Tremors “through the roof” Ian has been living with Parkinson’s disease symptoms since the mid-1990s. At one point, his tremors were “through the roof,” he says. He experienced severe side effects while on prescription medications for PD – including nausea, acid reflux, heartburn and irritable bowel syndrome that kept him from sleeping and worsened over time. He searched online for natural relief for tremors and read accounts of people successfully treating their PD symptoms with different forms of cannabis. “I tried a little and was amazed at the effect it had,” he said The U.K. has approved one cannabis-based treatment as a prescription medication for multiple sclerosis, called Sativex, but marijuana itself is not legal as a treatment for PD or other conditions. The U.S. FDA has not recognized or approved marijuana as medicine and says the purity and potency of …

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Top Rheumatoid Blogs of 2016

Today is Rheumatoid Awareness Day and this year we wanted to share some of the top rheumatoid arthritis blogs that were included in Healthline’s 16 Best Rheumatoid Arthritis Blogs of 2016 list: Itis Stay up-to-date to learn about RA’s long-term effects and practical tips for living with RA. This blogger’s socks help treat the pain of RA and of Raynaud’s, (an autoimmune blood vessel dysfunction that sometimes co-occurs with RA). 2. All Flared Up This blog is about “living rather than wallowing” with RA. Check in to see how blogger Amanda is learning to understand her body and how it works with RA. 3. Arthritic Chick Before Arthritic Chick was finally diagnosed with RA, she suffered with pain in her hands, feet and ribs for years. On her blog, she shares the good days, and her bad days with openness, honesty and strength. 4. An Attitude of Gratitude Julie Faulds’ easygoing blog gives us a peek into her life with her family, thunder-phobic dog — and, her RA and fibromyalgia. Julie chooses an “attitude of gratitude” and her bad days make her good days better and brighter. Always an advocate of finding the positive, she suggests thinking of your RA downtime as a …

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Meet Cris from the PatientsLikeMe Team of Advisors

Say hello to Cris (@Criss02), another member of the 2016-2017 Team of Advisors. Cris is a proud grandparent and a vocal advocate for the ALS community. She sat down with us and opened up about what it’s really like to live with her condition. Cris recently presented at the ALS Advocacy conference in Washington D.C., and she chatted with us about why raising her voice is so important: “Without our voices things would remain the status quo.” What gives you the greatest joy and puts a smile on your face? Family. Just waking up in the morning. Thankful my son and his wife have taken us in so we’re not alone on this journey. So proud of him as a dad, teacher/coach! Seeing my teenage grandson each day with his silly sense of humor, loving kindness and our talks about his day as he lays on my bed. Seeing my granddaughter every day and proud of the woman and mother she has become – we watch our great granddaughter for her while she works. I can’t hold her but I can feed her on my lap and talk and be silly with her, my husband has diaper duty! Such a …

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