In the 13 years since her husband, Todd, was diagnosed with ALS, Kristin Neva has learned a few things as his primary caregiver. Every journey is different, she says, but support and help are crucial, as is finding ways to recharge.
Mary Alice with her husband, Holt. (Photo courtesy of Mary Alice Poling) This is Mary Alice Poling’s story: My name is Mary Alice Poling and my son, Seth, who is 37 years old, has ALS. He has been living with ALS for nine years. If I’m truthful,…
Locanabio‘s investigational therapy significantly reduced the buildup of toxic RNA molecules in amyotrophic lateral sclerosis (ALS) patient cells and mouse models associated with C9ORF72 mutations, according to new data. These RNA products — intermediate molecules that are produced from DNA as a template for protein production — are…
Assistive equipment and adaptive devices for people with ALS can help make life more manageable and comfortable. These include aids for eating and drinking, getting dressed, bathing, using the toilet, grooming, and for recreation and mobility.
Navigating life with ALS has an impact not only on physical well-being but the mental health of both patients and caregivers. Therapy, medications, and emotional support groups and forums, among other strategies, can help ease the symptoms of depression or anxiety.
A friend who visited Mayo Clinic in Rochester, Minnesota, for a serious health issue posted a video on social media of a string quartet playing in the towering glass atrium of the Gonda Building there. It brought back memories of when my husband, Todd, and I went to Mayo for…
It's easy to feel isolated when dealing with a chronic disease like ALS, but help and support is available. For those who may need a little extra guidance or reassurance, we’ve compiled a variety of tips and advice from our ALS community that you may find useful.
The data platform PatientsLikeMe (PLM) has made its de-identified amyotrophic lateral sclerosis (ALS) patient database available to scientists around the world to advance clinical research in the neurodegenerative disorder. Part of a collaboration between PLM and the Neurological Clinical Research Institute (NCRI) at Massachusetts General Hospital (MGH), the…
Britley Wells and Brian Jeansonne. (Photo courtesy of Britley Wells) This is Britley Wells’ story: Hi there! My name is Britley Wells, and I am a trauma intensive care registered nurse at University Medical Center New Orleans. In early January, I had the privilege of meeting the…
A few months after I learned I had ALS, I was invited to participate in a walkathon to help raise funds for the ALS Association. I’m sure my curt reply of “No, thank you” came as a shock to the person inviting me. At the time, I had…
