Medical marijuana is a hot topic in the news (and here in the PatientsLikeMe community). So we took a closer look into what it is, how it works, and what members are saying about it. Take a look: Do you use medical marijuana? Head to PatientsLikeMe to join the conversation and share your experience. Share this post on Twitter and help spread the word.
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 …
Illustrating member perspectives on life with chronic illness Read More »
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 …
In the market to live better: ALS members weigh in Read More »
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 …
From tomatoes to turmeric: Can foods fight inflammation? Read More »
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 …
The ALS battle forces changes: A guest blog by member Jim Burton, the ALS Warrior Read More »
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 …
Want to know more about Radicava (edaravone)? Here’s a snapshot: Read More »
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.
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 …
Worth a thousand words: A day in the life of Larry Read More »
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.
Back in January we introduced Cris, a member of the 2016-2017 PatientsLikeMe Team of Advisors living with ALS. She’s also a fierce patient advocate who’s participated in several clinical trials since her diagnosis. We recently caught up with her to learn about her experience with clinical trials and why access and awareness of clinical trials is so important. Despite her shy personality, Cris got involved with patient advocacy with the encouragement of her ALS specialist, Dr. Richard Bedlack. Determined to overcome her shyness, Cris found motivation and purpose in advocating for future patients, family and friends and the belief that access to all trials should be easily available for a patient and not complicated to locate. In May, she attended the ALS Advocacy Day in Washington D.C., where she represented pALS from North Carolina and shared her own ALS journey with her state’s senators. Cris believes that clinical trials are critical for survival, present and future, but physicians don’t know about, or take the time to discuss current trials with patients unless their facility is active in research. There are very few active ALS clinical trials and because of stringent trial protocols, many patients are not accepted due to progression …
The record on research: Catching up with TOA member Cris Read More »
