PALS Archives |

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… Continue reading Circulation issues & ALS

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

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

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… Continue reading In the market to live better: ALS members weigh in

“I feel as if I’ve been given more time to spread awareness.” – An interview with ALS member Lisa

Lisa (Ltbeauti) was studying to become a teacher in Richmond, VA, when she was diagnosed with ALS—the same type that affected both her sister and father. After joining PatientslikeMe in 2008, Lisa has made it her mission to stay proactive about her health and, like any good teacher, offer support and share her experience with… Continue reading “I feel as if I’ve been given more time to spread awareness.” – An interview with ALS member Lisa

An Interview with DannyD to Kick-Off ALS Awareness Month

It’s ALS Awareness Month! Did you know there are more than 4,500 patients with ALS (PALS) in PatientsLikeMe’s flagship community? We’ll be updating you all month on what is being learned by and from our PALS, so stay tuned. To kick us off, here is an interview with one of our long-time, three-star members –… Continue reading An Interview with DannyD to Kick-Off ALS Awareness Month

PatientsLikeMe ALS Patient Spotlight: Edwin

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview a PALS each month to find out more about how he or she approaches life. This month we are pleased to feature Edwin, a three-star member. What inspires you? For me, it is not what… Continue reading PatientsLikeMe ALS Patient Spotlight: Edwin