Each member of the team at an ALS multidisciplinary clinic plays an important role in delivering critical care for people living with ALS and their families. Association-wide liaisons work closely with ALS clinics nationwide, ensuring each patient’s unique needs and wishes are being addressed throughout their journey living with ALS. We recently spoke with Suzanne Schrag, senior director of care services for The ALS Association Rocky Mountain Chapter, and clinic liaison to ALS multidisciplinary clinics across Colorado and Utah.
The American Academy of Neurology ALS quality measures provide guidance and recommendations to health care providers, to ensure the most current information is available to provide the highest standard of care for individuals living with ALS. AAN has published draft updates to the ALS Quality Measurement Set and is now accepting public comments to help inform the final updates.
While there are many moving parts within an ALS multidisciplinary clinic, each team member plays an important role in delivering critical care for people living with ALS and their families. The leader of the team is the medical director, providing the professional guidance and support necessary to meet the unique needs of each patient throughout their journey living with ALS.
The multidisciplinary care model brings together a team of health care professionals specially trained to address the needs of people living with ALS, allowing them to receive care from each discipline they need during a single visit. The ALS Association collaborates with experienced ALS clinicians across the country to help ensure people living with ALS have access to this type of specialized care.
People with ALS and their caregivers who participated in a recent ALS Focus survey said that telehealth appointments improved their quality of life by saving them time and money, and that the appointments are just as good as in-person health care visits.
Connecting ALS recently sat down with Ann Larson to learn more about her experience as an ALS caregiver for her beloved husband Dave, and better understand the challenges she encountered during their three-year journey with the disease.
My husband’s ALS journey is not unique. It started with weakness in his left leg, and a few other puzzling issues which he began to note around 2010. We didn’t do anything about it until October 2012, when things got more puzzling.
When your loved one receives a diagnosis of ALS, you transition into a new role as a caregiver. This may happen gradually over time, or quickly, catching you off guard and possibly unprepared. Regardless of where you are in your caregiving journey, who better to accept advice, guidance and emotional support from than other families and caregivers who are living through similar experiences?
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 ALS Association believes that upon diagnosis, people living with ALS/MND and their families must have the right to access genetic counseling and testing, current education about clinical genetics in ALS/MND and safeguards against genetic discrimination. Thanks to a sponsorship from Biogen, the diagnostic company Invitae is offering genetic testing and post-test counseling to people with ALS and their families at no charge.
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.
Over a year ago, Sophia Harding became a volunteer for The ALS Association, a fourth-generation member of the Barnett family to join the fight against ALS. In the midst of the COVID-19 pandemic, she moved to Florida and joined the team at The ALS Association Florida Chapter as a Phone Friend Volunteer.
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.
Thanks to the tireless work of ALS advocates, people diagnosed with ALS who already qualify to receive SSDI benefits are immediately eligible for Medicare as well. That makes Medicare open enrollment an important window of time for the ALS community.
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.
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.
The physical impact of living with ALS presents multiple challenges for those diagnosed and their families as the disease progresses. With the help of innovative technologies, some facilities around the country are finding creative ways to do whatever it takes to make ALS a livable disease.