Paying attention to the big moments of life, while not forgetting to pay attention to the little things, is what palliative care is all about. By definition, palliative care is a whole-person approach to care that focuses on quality of life, relief from pain and symptoms, and reducing emotional distress for a person living with a serious illness or disease like ALS.
On behalf of everyone living with ALS and their families, the ALS Association sent a letter this week to members of the House and Senate demonstrating our support for the passing of the ALS Better Care Act which will increase access to multidisciplinary care clinics for people living with ALS.
In most people’s journey with ALS, they will be confronted with the decision of using a feeding tube to help maintain proper nutrition and enhance their quality of life. As part of the ALS care planning process, people with ALS should discuss the various options with their multidisciplinary care team, weigh the pros and cons, and understand how their decision may impact their overall health.
We know multidisciplinary care for people living with ALS and their families is proven to extend survival and improve quality of life. At the ALS Association, we work with the best ALS physicians and clinics across the U.S. to make sure people living with ALS have access to the best specialized care no matter where they live. Our Certified Treatment Centers of Excellence™ and Recognized Treatment Centers™ provide people with ALS compassionate care in a supportive, family-oriented atmosphere.
To help educate the public and raise awareness of the growing issues people with ALS and their families struggle with, ALS Association CEO Calaneet Balas recently shared her views about insurance denials in an op-ed published by the International Business Times, specifically relating to the use of ventilators and assistive technology.
The type of care that people with ALS receive affects survival and quality of life. That is why the ALS Association is committing nearly $2 million over the next two years to support research focused on optimizing the effectiveness, efficiency, and accessibility of ALS care. These funds, granted through the new Quality of Care Research Awards, will be distributed across five projects that focus on the health and care for people living with the disease.
People with ALS already experience stiff muscles in their hands, arm, legs and feet, and winter temperatures can make this situation worse. Cold weather causes muscles to contract and become tight, which can be painful. However, people living with ALS can still enjoy this time of year. Here are some tips on dealing with cold weather for people affected by ALS.
Even as they face ALS, Tim and Deanna Trausch try to live by message on the ornament that hangs on their bathroom mirror: “Today is a good day to have a good day.”
For people with ALS and their families, traveling presents challenges beyond the typical concerns about weather, delays, and traffic jams. But with some planning and patience, you can ensure everyone is able to make it to their destination safely. Here are some tips to help make the trip as smooth as possible.
Wendy Wilson shares the story of her husband, Michael: his ALS diagnosis and how their family loves, laughs together and supports each other through this journey.