My husband's ALS diagnosis didn’t explain the symptoms I was seeing. I searched the internet late at night and concluded that he also had Frontotemporal Dementia (FTD). Symptoms of FTD include a loss of empathy and executive function, an increase in inappropriate actions, a lack of judgement and inhibition.
The Association provides free online access to a variety of options, including publications, videos, books, and informative websites that provide a wealth of easy-to-access information on important topics relevant for people living with ALS and their caregivers.
The Letters family has graciously shared different perspectives of their family’s very personal journey with ALS on our blog throughout the past year. In recognition of National Family Caregivers Month, Patty Letters was kind enough to tell her side of the story living as an ALS caregiver.
Only those living through the experience first-hand truly understand the challenges of being a full-time caregiver, particularly for someone living with ALS. The ability to complete basic daily tasks can be overwhelming and the need for help is great.
The impact of ALS on breathing is likely one of the most daunting aspects of the disease journey and one for which you and your family can and should prepare for early on. There are many different options and interventions to consider, and education and proactive planning can help to ease the stress for everyone involved.
We talked with Dr. Marion Sommers-Spijkerman, postdoctoral fellow from the Netherlands, to learn more about her research focused on developing and evaluating a guided web-based self-compassion intervention aimed at reducing self-stigma in people living with ALS and their primary caregivers.
Navigating the world of healthcare and insurance, especially Medicare, can be very complicated and overwhelming. It's important to make the right decisions when it comes to health insurance plans and to understand the available options that could impact the critical care you need.
Adequate nutrition helps maintain energy stores, supports a strong immune system, and reduces the risk of chronic diseases. But the demands of caregiving can put healthy meals on the backburner. Here are some tactics to simplify mealtimes while still eating healthy.
When my husband Tom was diagnosed with ALS, we were embraced by the ALS community. But as his health declined, I didn’t really feel ALS was what was stealing my husband from me. I felt more connected to people losing loved ones to frontotemporal dementia, also known as FTD. I did lose my husband to ALS… a particularly cruel and nasty form of ALS that includes FTD.
October 1st marks the first day of National Physical Therapy Month, a time to raise awareness of the key role that physical therapists play in helping people improve mobility, find relief from pain, and live healthier, more physically able lives.
We recently spoke with JoCarolyn Chambers, care services manager at The ALS Association, to learn more about her experience in the field of grief counseling, how to handle these difficult and sensitive conversations about loss and the advice she has for people impacted by ALS.
Throughout September we have highlighted some of this year’s scholarship recipients, sharing their personal stories about the impact ALS has had on their lives. We recently talked with Elita Schmidt to learn a little more about her connection to ALS, what receiving the scholarship means to her, and her future plans in healthcare.
Unlike most Medicare recipients who need extensive home care and rehabilitative services, people with ALS do not improve, and the intensity of their service needs increase over time. That means standard Medicare cost control approaches don’t work well. I will discuss two examples.
Telehealth has been an important element in U.S. health care for decades, but the COVID-19 public health emergency has put a spotlight on the need to maintain and expand access to telehealth to ensure everyone can receive appropriate care when and where they need it.
We recently talked with Kaiden Anderson to learn a little more about his personal connection to ALS, what receiving the scholarship means to him, and his future plans in healthcare.
There is a lot to do, and this grounded focus of making ALS livable helps us hold everyone—ourselves, the FDA, and the research community—accountable to real impacts on real people with ALS and the time it takes to deliver those impacts. This week has been a big step forward for the ALS community, and we will continue urgently working to keep the momentum going.
We recently talked with Emma Thompson, one of this year’s award recipients, to learn a little more about her personal connection to ALS, what receiving the scholarship means to her, and her future plans in nursing.
We recently talked with Ally Halverson, one of this year’s award recipients, to learn a little more about her personal connection to ALS, what receiving the scholarship means to her, and what her future plans are in healthcare.
Dr. Jeffrey Rothstein, professor of neurology and neuroscience and the founding director of the Robert Packard Center for ALS Research at Johns Hopkins University School of Medicine, and Dr. Alyssa Coyne, a postdoctoral fellow at Johns Hopkins, discuss their recent publication of research identifying a cellular defect common in ALS and what it means for research into the disease going forward.
Taking the time to understand the disease’s progression and make plans to deal with the physical impact can help ease the burdens faced by people living with ALS and their caregivers, helping them live longer, stronger, more independent lives.
