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2018 National ALS Advocacy Conference: A recap from Team of Advisors members Rich & Paul

Last month, Rich and Paul from this year’s Team of Advisors attended the 2018 National ALS Advocacy Conference in Washington D.C. to learn about the latest ALS research, network, and meet with members of congress on Capitol Hill. Just over 600 people attended the event, including 100+ pALS and 240 first-time participants. The event started on Sunday with opening remarks followed by an afternoon session, reception, networking dinner and entertainment. Paul and Rich had the opportunity to share with pALS about PatientsLikeMe. Read on to learn how it went and what they accomplished. (front row: Holly Crowder, Stacy Crowder, Kathy Tavano, Team of Advisors member Paul and Tanner Hockinsmith from the ALSA; back row: Stephen Reynolds from Senator Cronyn’s office) Day 2: Research & Policy Opportunities to participate in research: Rich (and other participants) gave saliva samples to the Centers for Disease Control (CDC) and blood to the National Institutes on Health (NIH). Interview with Rich: Rich spoke about the ALS Registry Taskforce that exists to brainstorm and come together to find ways to increase participation. Public Policy sessions: These sessions included time to prepare for the visit to Capitol Hill, a Congressional Panel with bipartisan Congressional staff and remarks from US Senator Bill Cassidy. Interview with Pat …

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telemedicine

Dr. Rick Bedlack weighs in on telemedicine

Do you have difficulty getting to your doctor’s appointments? Ever thought about using telemedicine? Connecting online can make it easier to get the care you need. Here, Dr. Rick Bedlack (a tenured associate professor of Medicine/Neurology at Duke University and the director of the Duke ALS Clinic that’s partnering with PatientsLikeMe in the current Lunasin study) explains the basics of telemedicine, his “Tele-ALS” program and how telemedicine could improve patient clinical trial experiences in the future. Telemedicine 101: How does it work? “Telemedicine” connects patients and their doctors through secure video conferencing programs (similar to “FaceTime”). Both parties need to have a computer, tablet or smartphone, and a video conferencing program that has been approved for use by the doctor’s institution. I have been offering this type of care to patients with ALS for several years now, through separate “Tele-ALS” programs at the Durham VA Medical Center (VAMC) and Duke University. The pros of telemedicine No travel: The main benefit of Tele-ALS is that it allows patients with ALS who live in rural areas to continue to connect with their ALS specialist throughout their disease, even when travel becomes difficult or impossible. Symptoms management: This connection facilitates expert identification and management of the many …

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man rubbing sore foot

Circulation issues & ALS

Do you have circulation issues like swelling (also called edema) or a burning (or cold) sensation in your legs and feet? How do you cope? From compression stockings to therapeutic massage and limiting salt intake, pALS are managing their circulation issues in some creative ways. Why do some people with ALS experience poor circulation? For many people living with ALS walking becomes difficult as their condition progresses. Lack of physical activity can make it difficult for the blood to reach the legs, feet, arms and hands, leading to poor circulation and swelling (some PatientsLikeMe members report swelling in their feet and hands). Swelling is also caused by dehydration, inflammation or consuming too much salt. Some symptoms include: Swelling or puffiness in legs, arms, hands or feet Stretched and/or shiny skin Skin that stays depressed after being pressed How pALS manage: If you’re experiencing any of the symptoms above, talk to your doctor. He or she may prescribe a diuretic (or water pills, to help rid your body of excess salt and water) but diuretics should be used with caution since many pALS are already dehydrated. Here are a few things some pALS are trying: Lymphatic massage (also called manual lymphatic drainage massage), a gentle type of massage that can help …

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Cannabidiol (CBD) oil and product FAQs: Fad or effective? Legal or not?

Trending: Cannabidiol (CBD) oil, gummies, tinctures and more. Why are cannabis products gaining popularity as medical treatments and in general? As more states have legalized medical marijuana, more people have shifted their views on cannabis treatments (like former Speaker of the House John Boehner’s recent change of heart). And last month, an advisory panel at the U.S. Food and Drug Administration (FDA) unanimously recommended a medication made from CBD for some forms of epilepsy. CBD comes from cannabis/marijuana but has some key differences. So, let’s take a closer look at CBD products and some FAQs, like, do they work and are they legal? What is CBD? Short answer: Cannabidiol (pronounced canna-bid-EYE-ol) or CBD is a chemical found in cannabis plants that does not produce a “high.” More info: Cannabis plants can produce more than 100 different types of cannabinoids, a type of chemical that reacts with receptors in the brain. The two most common cannabinoids found in medical marijuana are THC (delta-9-tetrahydrocannabinol) and CBD (cannabidiol). THC is responsible for producing the mental and physical effects of medical marijuana. CBD has many of the same therapeutic qualities as THC, but without psychoactive effects. (For even more info, read our report called “Weed 101: How and why patients use medical marijuana.”) …

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Health news: What’s making headlines this month

Let’s stay on top of the latest health news — in case you missed it, check out this round up of some of the stories making headlines in May. ALS May is ALS awareness month: Later this month, advocates from across the U.S. will head to Capitol Hill to meet with their legislators. Check out how you can get involved and join the fight against ALS. Congress passes $3 billion increase in NIH funding: $140 million of the increase will go to the BRAIN Initiative research projects that contribute to the knowledge and understanding of ALS. More info. Lupus May is Lupus Awareness Month: Nearly two-thirds of people know little or nothing about lupus beyond the name, according to the Lupus Foundation of America, which is promoting the “Go Purple” campaign. Get ideas for boosting awareness. A link between the “mono” virus and lupus? A new study published in Nature Genetics shows that the Epstein-Barr virus (EBV) — known for causing mononucleosis — may increase the risk of lupus and six other autoimmune diseases by changing how some genes are expressed. Check it out. Parkinson’s Disease “Suspect” Parkinson’s drug faces scrutiny: Following reports of hundreds of deaths and adverse events, the FDA is re-examining the safety of Nuplazid (pimavanserin), which …

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Remodeling for ALS? Tips from a pALS who’s been there

Thinking about remodeling your home but don’t know where to begin? You’re not alone. Many people living with ALS consider a remodel to accommodate their needs as their condition progresses but don’t know where to start. To get some real-world advice, we talked to Jonathan Woodman, a pALS who recently renovated his garage into what he’s dubbed “Garaj Mahal.” Here’s his advice: First up: Focusing on a space Where’s the center of energy in your house? If your family tends to gather in a certain room (like the kitchen or living room) or on a certain floor, you may want to consider remodeling a space nearby. You’ll spend the majority of your time here so it’s important to make sure you won’t feel isolated. Is there enough space for friends or family to visit? Plenty of comfortable and spacious seating is an important part of making sure you have an inviting and comfortable space for visitors. Is there natural light? Where’s the sun? While the basement often feels like the most logical place for a remodel, you may want to consider a space with more natural light and accessibility. Windows and easy access to the outdoors can help improve mood and keep you …

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microphone button computer keyboard

Communicating with ALS: From devices to voice banking

Difficulty with speech and communication is a frustrating reality for many living with ALS. From apps to devices and voice banking, communication is a popular topic (as in over 35k conversations) on PatientsLikeMe, so we took a closer look into some of the options out there for pALS. Tablets: Windows vs. iPad vs. Android Trouble with typing or hand weakness? Amy, an augmentative communication specialist at Forbes Norris ALS Research and Treatment Center, recommends Windows (8 or 10) and Android tablets: Windows devices have USB ports which makes them the most compatible with accessories like a mouse, joystick, eye tracking or head tracking device. Androids may be compatible with these accessories as well, but often require a USB adapter. Adaptors are specific to the Android port and are inexpensive and easy to find online if you search for “USB adapter” and the make and model of your Android device. iPads don’t offer these accessory options that use a pointer because their screens don’t display a mouse cursor. They do offer switch scanning access methods (a system by which a series of choices are highlighted and can be selected by hitting/activating a switch) for people who can’t use their hands on a screen or external …

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Life-changing second opinion stories: “I decided to get a second and third opinion…”

Stories showing the importance of second opinions have been popping up in the media and on PatientsLikeMe. Check out the recent news headlines, hear a remarkable story of a PatientsLikeMe member who received a life-saving lung transplant after getting a second (and third) opinion, and share your own experience of piecing together your health puzzle. Extraordinary second opinion stories The Washington Post recently featured two powerful pieces related to second opinions — one about a man who got a second opinion at his mother’s urging (and received life-saving treatment for metastatic testicular cancer), and another about a woman who did not seek one and underwent unnecessary major surgery (removing her breasts and uterus). “I am damaged for the rest of my life,” the woman said. PatientsLikeMe member Theresa (Pipersun) recently shared her “whirlwind experience” and remarkable second opinion story in the forum. After two bouts of severe pneumonia earlier in 2017, a CT scan in June confirmed Theresa had a serious lung condition, idiopathic pulmonary fibrosis (IPF). While the diagnosis was correct, her doctors did not believe her condition was as advanced as she suspected. “My pulmonologist was terrible,” she says. “He would not prescribe me oxygen, and would not sign a referral for pulmonary …

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Illustrating member perspectives on life with chronic illness

In medical terms, most health conditions have clear definitions. But only people living with chronic illness know what it really feels like to live with it — and making others understand can be a challenge. When we asked some PatientsLikeMe members to explain what life was like with their condition, their responses painted vivid pictures of what they’re going through. So, we asked PatientsLikeMe User Experience Designer Kristina Ng to turn those descriptions into illustrations. Depicting life with lupus, multiple sclerosis, mental health and more, Kristina’s illustrations sparked a discussion in the PatientsLikeMe community. Battling cluelessness and confusion Member Tommy Dubuque was diagnosed with Parkinson’s disease in October 2002, though he’d been experiencing symptoms long before that. “I first noticed symptoms in the mid 1990’s. My youngest daughter told my wife that sometimes my hand would shake. It was getting harder for me to get out of chairs and get up from the ground if I was doing yard work. I just attributed it to old age and not taking care of myself as a young man.” Tommy was forced to retire in 2006, but that didn’t stop him from staying physically active. “I began physically working hard around our property.” He …

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