Blog

ALS Association
Expanded Access: What is It, and Who’s Eligible?
Expanded Access, or “compassionate use” as it is often referred, allows patients with a terminal diagnosis early access to new therapeutics that show promise – even if the patient is not involved in the ongoing clinical trial – or if the medication has not yet been approved by the FDA.
Blog
ALS Association
Managing Everyday Living Activities and ALS
Occupational therapists are key members of the clinic team for individuals living with ALS. As ALS progresses, most people gradually lose their ability to use their hands and their arms as their muscles weaken. Occupational therapists help to provide expertise and creativity to help patients better manage daily activities for as long as possible.
Blog
ALS Association
Living with ALS: Resources to Help Manage Your Independence
On a recent Connecting ALS podcast episode, Maintaining Mobility, we sat down with Shannon Terrell, Doctor of Physical Therapy at the Kaiser ALS clinic in Colorado to learn more about her experience treating people living with ALS and get her thoughts about how she helps her patients manage their mobility.
Blog
ALS Association
Mindful Mobility
Heidi Tarr Henson, diagnosed with ALS last spring, shares thoughts about her personal journey living with the disease, how she’s managing her personal changes in mobility and how she strives to just live in the moment.
Blog
ALS Association
Living with ALS: Making Sure Your Home Environment is Safe and “Livable”
Home modifications can be permanent or temporary, low­‐tech or extremely sophisticated. To help address the many questions and concerns people and their families often have, The ALS Association has developed a series of educational videos to introduce and explain strategies to remain safe while living with the disease.
Blog
ALS Association
Living with ALS: Maintaining Your Independence as Mobility Declines
Finding ways to remain independent and prevent potential harms caused by everyday living activities can be a challenge for people living with ALS as their disease progresses. To help address the many questions and concerns people and their families often have, The ALS Association has developed a series of educational videos to introduce and explain strategies to remain safe while living with the disease.
Blog
ALS Association
Living with ALS: Planning for Mobility Changes
Decreasing mobility is a challenge faced by every person living with ALS at some point in their disease journey. Finding ways to help people maintain their independence and prevent potential harms caused by everyday living activities is a priority for the ALS community.
Blog
ALS Association
Five Facts to Help Maintain Good Nutrition When Living With ALS
While good nutrition is important for everyone, it can be very challenging for people living with ALS to maintain a healthy diet due to chewing and swallowing difficulties. Improper nutrition can cause people to feel tired, lower their resistance to infection, speed the loss of muscle mass, cause constipation and lead to a host of other health problems. Below are some important facts to know and tips on maintaining good nutrition despite having ALS.
Blog
ALS Association
Sarah Trott: ALS and Handling Grief and Loss
Connecting ALS recently sat down with Sarah Trott to learn more about her experience as an ALS caregiver for her father who recently lost his battle with ALS, and better understand the challenges with grief she has experienced and the steps she is taking to overcome her terrible loss.
Blog
ALS Association
Feeding Tubes: What You Need to Know to Help in Decision Making
In most people’s journey living with ALS, they will be faced with the decision of using a feeding tube to help maintain proper nutrition and enhance their quality of life. The following resources have been developed to provide you with the knowledge you need to help make this decision with the minimum amount of stress and difficulty. 
Blog
ALS Association
Suzanne Schrag, Senior Director of Care Services and ALS Clinic Liaison
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.
Blog
ALS Association
AAN Accepting Public Comments on Updated ALS Quality Measurement Set
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.
Blog
ALS Association
Meet Dr. John Novak, Neurologist and ALS Clinic Medical Director
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.
Blog
ALS Association
Extending Survival for People 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.
Blog
ALS Association
ALS Focus Results Show Benefits to Telehealth Access
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.
Blog
ALS Association
Sharing Advice for My Fellow ALS Caregivers
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.
Blog
ALS Association
ALS Advice from One Caregiver to Another
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?
Blog
ALS Association
Loving and Caregiving for Someone Living with ALS and FTD
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.
Blog