ALS

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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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Shout out to The Golden Girls: Shows and movies that “get” chronic illness

‘Tis the season for binge-watching — but the media often flops in its portrayal of people with health conditions. So we’ve gathered patient perspectives on Hollywood depictions of illness and who’s gotten it right (thanks, Bea Arthur). When doctors doubted Dorothy A writer for The Mighty who has multiple health condition recently praised The Golden Girls for it’s portrayal of main character Dorothy navigating the healthcare system with a chronic condition. Over the course of a two-part episode (called “Sick and Tired”), Dorothy (played by Bea Arthur) starts feeling constant exhaustion and hops around to different doctors who don’t believe she has a real ailment. “Maybe I am crazy — nobody believes me,” Dorothy laments to Rose (Betty White) after multiple appointments. “Dorothy, you are not crazy, honey, you’re sick,” Rose replies. (Thank you for being a friend, Rose.) Ultimately, Dorothy is relieved when a specialist finally diagnoses her with chronic fatigue syndrome (CFS). The show was ahead of it’s time in building credibility around CFS, which is just now gaining recognition as a serious longterm condition that shares many characteristics with some autoimmune conditions. Golden Girls creator Susan Harris based the episodes on her own experiences with CFS and doctors who didn’t understand the condition in the 1980s. Other shows …

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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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In the market to live better: ALS members weigh in

Over the years, the PatientsLikeMe ALS community has shared what products help them manage their new normal with ALS. From eye-gaze devices to elevated toilet seats and alternating pressure mattresses, we compiled a list of some of the products that you, the experts, are talking about in the forum. Check it out: When it gets difficult to turn over, members mentioned: Drive Medical alternating pressure mattress Check out Amazon for a variety of inexpensive alternating pressure mattress pads and pumps To manage muscle weakness, Kate shared a list of helpful products: For writing: PenAgain – alternative style pen, eliminates the need for a firm thumb-forefinger grip to write. Available online and in office supply stores. Magnetic closure shirts. The shirts have buttons sewn on the front, but the closure is secured with small magnets behind the buttons, including the cuffs. Devices that “cinch” your shoelaces (regular or elastic) closed so you don’t have to tie your shoes each time. An example is “lock laces.” The “Toilevator” is a very small pedestal that goes under the entire toilet and lifts the entire thing up about 3 ½ inches, works with a bidet seat. For Eyegaze: Tobii Dynavox, Tellus 5, PRC Accent 1400 and Eyegaze Edge from LC Technologies And, other communication devices: Boogie …

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From tomatoes to turmeric: Can foods fight inflammation?

Inflammation is a hot topic. What’s it all about? And what’s the scoop on certain diets, foods and supplements, such as turmeric, when it comes to fighting inflammation? What is inflammation? Not all inflammation is “bad.” Acute inflammation is part of the body’s natural way of defending itself from foreign substances like viruses, bacteria, cuts and splinters. It may cause redness, swelling, heat and/or pain. The upside is, these symptoms are a sign that the body is responding after an injury or infection by triggering white blood cells and disease-fighting chemicals. But some “other” kinds of inflammation — like chronic inflammation (which may include constant low-grade or systemic inflammation) and inflammation from autoimmune disorders (where the body attacks its own healthy cells as if they’re foreign) — doesn’t always show visible or obvious symptoms and can play a more long-term and complex role, according to Mayo Clinic. Which diseases or conditions does it affect? Mounting research shows that inflammation is a common underlying factor (and possibly a cause) in many — perhaps even all — diseases. You’ve probably heard about the role of inflammation in arthritis or heart health. But researchers and doctors have also studied inflammation’s link to a wide range of other diseases and conditions, including cancer, diabetes, Alzheimer’s …

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The ALS battle forces changes: A guest blog by member Jim Burton, the ALS Warrior

A harsh reality of progressive diseases like ALS is that your body is constantly changing. After my ALS diagnosis in January 2013, I noticed that the progression seemed to happen in stages. After losing some degree of capacity, I’d settle on a new plateau, which became my norm for a while. The plateaus have become shorter, and the declines have become more pronounced. Neurologists call ALS a progressive disease, but to my family and me it’s digressive as my health declines. In turn, the digression forces change as today I can’t do what I did yesterday. The biggest changes happened early on as I lost the ability to walk and began using a motorized wheelchair. As dramatic as the change appeared when I became a de facto paraplegic, the new plateau felt manageable. With a handicap-equipped van and hand controls for driving, I maintained most of my independence. For several years after the diagnosis, I worked as a freelance journalist not only writing stories, which I could do from my home, but also going on location for the photographs. In one week, I traveled alone about 900 miles throughout Georgia and stayed in several hotels. Two years later, I had …

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Want to know more about Radicava (edaravone)? Here’s a snapshot:

With the recent FDA approval of Radicava (edaravone), we wanted to know more about how it works and what it means for patients living with ALS. We asked Maria Lowe, Pharm.D., BCPS, and our Health Data Integrity team, to give us a snapshot of the drug, how it’s used and what you should know. Maria’s rundown is meant to give you more context so you can have better conversations with your care team – as always, talk with your physician before starting any type of new treatment. Radicava: The quick hits Radicava works as a free radical scavenger. When free radical (toxic by-products of cells that are highly unstable and reactive) levels are too high, cells are damaged resulting in oxidative stress (which may damage motor neurons). The way in which Radicava works to help patients with ALS is not fully understood yet; however, researchers believe that by getting rid of these free radicals it can help prevent some cell damage. In clinical trials, treatment with Radicava was found to slow the decline in functional disability as measured by ALSFRS-r scores for some patients. However, it is important to note that Radicava does not stop the death of motor neurons (it’s …

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How does ALS make you feel #InThreeWords?

May is ALS awareness month and this year, we’re joining the ALS Therapy Development Institute to share how ALS makes us feel, #InThreeWords. Sad, determined, frustrating as hell – just a few of the words PatientsLikeMe staff chose. Want to get involved? Check out what PatientsLikeMe staff had to say, including a video from our co-founder, Jamie Heywood.       And, check out 2016-2017 Team of Advisor member Cris’ three words: What are ALS members saying in the forum?    “Enraged, alone, afraid” – Kzueger  “Uninvolved, sorrowful, useless” – mbond0623 “Frustrated, compassionate, claustrophobic.” – jimig “Frustrated that I can’t stop this disease, overwhelmed at times by the losses created by ALS and grateful for kindness of others” – bountiful “Helpless, angry, pissed off.” – MsJLB   Let’s spread the word and end ALS together.   Share this post on Twitter and help spread the word.

Worth a thousand words: A day in the life of Larry

As a child, Sarah Howell loved art. She got her first camera at 6 years old and realized, over time, that she had a way of connecting emotionally and expressing herself through photos. Now, she has her own studio. Her passion? Capturing genuine family moments. Sarah often stays overnight in the home of the family so she can spend the entire next day with them, from start to finish. A day in the life of Larry Tyler When Sarah’s friend, Teri, asked her to capture a day in the life of her father, Larry Tyler, she was both shocked and honored. Larry, living with ALS that required 24-hour care, wanted the photos released to raise awareness and funding for ALS. Sarah was there with her camera, from Larry’s wake-up at 10:30am, until he went to bed that evening. What emerged was a series of 24 deeply moving photos that capture a day in the life of Larry and his family. While she was prepared for sad moments with the family, she wasn’t prepared for the level of caregiver exhaustion she witnessed. For Sarah, the realization that ALS is a family disease was the hardest part of her visit.   Despite …

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Paul Wicks on the power of sharing data

Back in December, our VP of innovation, Paul Wicks, Ph.D., spoke at the annual International Symposium on ALS/MND in Dublin. The goal of the annual meeting is to share new understandings of ALS/MND as quickly as possible through collaboration between leading researchers around the world. Now, we’re sharing a video of his presentation about what you and the ALS community has shared about living with ALS over the last 10 years. Here’s what Paul had to say: “We hope this presentation shows the power of patients sharing their data to help shed light on ALS. It’s a disease that can isolate people, rob them of their voice, and sap their strength to fight back, so we’re proud that we’ve been putting the data our members share to good use for over a decade now and we’re keen to share some highlights of what we’ve found.” What do you think about Paul’s presentation? Share your thoughts in the forum. Share this post on Twitter and help spread the word.

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