Investigators at Emory University School of Medicine reviewed 23 years of data from 1997-2020 for patients seen at the Emory ALS Center. To allow for adequate analysis of disease survival time, researchers included all patients who self-reported their race as Black or White and symptom onset was before January 1, 2017. A total of 1,298 patients were included in the study, 203 of whom were Black, and 1,095 of whom were White.
Recent changes to Medicare will enable people with ALS to receive services from speech language pathologists via telehealth through the end of the COVID-19 pandemic. These services include clinical care for swallowing and speech-generating devices - many challenges people living with ALS are faced with every day.
Recent changes at the Centers for Medicare & Medicaid Services (CMS) will enable people with ALS to receive critical services provided by speech therapists, normally provided at in-person visits, via telehealth during the pandemic. These services include clinical care for swallowing and speech-generating devices - many challenges people living with ALS are faced with every day.
People living with ALS will likely experience complications related to the disease that warrant a visit to the hospital at some point in their journey. At the same time, they are not immune from other injuries or medical issues—people with ALS can still get sick or possibly hurt themselves in ways unrelated to the disease. Making the conscious choice to be prepared can make all the difference.
As Feeding Tube Awareness Week comes to a close, we spoke with Brenda and Kelly Kraft and asked them to share their family’s story about their personal experience with making this difficult decision, and the relief they felt once they had made it.
Through word of mouth, Stuart and his wife Marcia found five or six families in their community who were also dealing with the impact of an ALS diagnosis. They started an informal support group. The group started working with the chapter relations team at The ALS Association and formed The ALS Association Alabama Chapter.
Once ALS takes away a person’s ability to swallow safely, maintaining adequate nutrition can become a challenge for people living with ALS and their caregivers. And finding delicious family friendly recipes for all to enjoy during the holidays can be difficult.
You may know the old saying “ship shape.” In many ways, that old reference to order and fitness defined Yvette Wilson’s life. She joined the United States Navy immediately after high school and the discipline that experience gave her has shaped her life in many ways. Even after she left the Navy, she lived an orderly life, blessed with good health and a loving family in Albuquerque, New Mexico.
All signs pointed to a wonderful future, until one day she started experiencing a heaviness in her feet.
I am the legacy of Oscar Aukschun, who was a wood pattern maker and first generation American and a resident of Cleveland, Ohio who developed weakness of his hands and arms in 1943 around the age of 43 years. He was a hard-working father who provided for his wife and three children.
November 1st marks the beginning of National Family Caregivers Month, a time to recognize and honor the tremendous contributions of family caregivers. Caregiving for someone with ALS has a broad and lasting impact, in both daily life and long-term well-being.
The ALS Association collaborates with some of the best ALS physicians and clinics across the United States to help ensure that people living with ALS have access to the specialized care they need, based on best practices. Disrupted by the pandemic this year and the ability to see patients in person due to quarantines and safety issues, providing care in a clinic setting took on the challenges of major change, but ALS doesn’t stop and neither do we.
Navigating the world of health care, insurance, and especially Medicare, can be very complicated and overwhelming. Making the right decisions when it comes to healthcare and understanding all of your options is critical for everyone, but even more so for people living with ALS.
We spoke with Renée Hetzler, physical therapist at the University of Rochester Medical Center’s multidisciplinary ALS and Huntington Disease Clinics, who shared her thoughts and experiences with patients and insights about the importance of physical therapy for people living with ALS.
People with ALS and their caregivers face a substantial burden accessing and understanding insurance coverage and paying for medical treatments and services, causing high stress, added work burden and debt for the ALS community.
Increased access to telehealth has long been a priority for The ALS Association and its advocates, as many people living with the disease have difficulty traveling to multidisciplinary clinics. In fact, many of the policy changes the Association pursued long before the pandemic have been enacted in response to the COVID-19 public health crisis. It is now critical that we fight to make those changes permanent.
Social distancing measures put in place in response to the COVID-19 pandemic created a unique dilemma for chapter staff who teach caregivers how to use critical assistive living devices that enhance the quality of life for their loved ones living with ALS.
For people living with ALS, reduced physical mobility and the ability to communicate often cause “Smart” homes – in which household items become connected and are controllable with the use of technology – can greatly improve accessibility and be life-changing for people living with the disease.
Emergencies and disasters can strike quickly and without warning. For the thousands of Americans living with ALS, emergencies such as fires, floods and acts of nature present a real challenge. June 1 marks the official start of hurricane season and with the coronavirus pandemic, it’s more important than ever to make sure you are prepared.