Written by Leigh Ann Nielson, PLM Member My name is Leigh Ann Nielson and I was diagnosed with ALS/Lou Gehrig’s Disease on November 27, 2019. It has been quite a journey. I am not a doctor, nor do I advocate for not following your doctor’s advice. That said, you have choices. Be sure your medical… Continue reading Hints and Ideas for Those with ALS or Mobility Issues and Their Caregivers
Tag: ALS
Risk Factors for ALS
Once considered a rare disease, amyotrophic lateral sclerosis (ALS) has become a common condition. About 6,000 new cases of ALS are diagnosed each year, and approximately four to six people per every 100,000 are living with the disease. Also called Lou Gehrig’s disease, it’s a progressive illness that affects nerve cells in the brain and… Continue reading Risk Factors for ALS
How to Adapt Your Living Space and Daily Activities for ALS
Your home is your sanctuary, but if you’ve recently been diagnosed with amyotrophic lateral sclerosis (ALS), it may feel like that sanctuary isn’t as safe as it used to be. As the illness progresses, it can become harder to move around your home and do the daily tasks you used to do. Because ALS is a… Continue reading How to Adapt Your Living Space and Daily Activities for ALS
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… Continue reading Communicating with ALS: From devices to voice banking
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). Golden Girls – When doctors doubted Dorothy A writer for The Mighty who has multiple health condition recently praised The Golden… Continue reading Shows and Movies That “Get” Chronic Illness
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.… Continue reading From tomatoes to turmeric: Can foods fight inflammation?
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… Continue reading Want to know more about Radicava (edaravone)? Here’s a snapshot:
“Hope makes us strong.” Cathy opens up for National Family Caregivers Month
Are you a caregiver or do you know someone who cares for a loved one? For National Family Caregivers Month, we caught up with Cathy (Catrin), who became a caregiver for her husband after he was diagnosed with bulbar onset ALS in January of 2015. As she learns to manage the dual roles of wife… Continue reading “Hope makes us strong.” Cathy opens up for National Family Caregivers Month
“When the wind turns against you, adjust your sails” – Member Steve opens up about living with ALS
Say hello to Steve (sheronemus), a member of the ALS community who also struggles with depression. We recently caught up with him to learn about how his life has changed since his diagnosis, the importance of doing what you love and how he manages multiple conditions. Check out what he had to say about what… Continue reading “When the wind turns against you, adjust your sails” – Member Steve opens up about living with ALS
Patients as Partners: John and David share their clinical trial experiences
We’ve been hearing from members of the Team of Advisors about how they’ve used the Partnership Principles in their health journeys. Recently, we sat down with John (Dockstoy), living with ALS, and David (Davidgewirtz), who’s living with lung cancer. John and David are both interested in research and have been involved in a few clinical trials. Below,… Continue reading Patients as Partners: John and David share their clinical trial experiences