Caregivers are the unsung heroes of ALS. Often, they're so busy supporting their loved one, their own physical or mental health takes a back seat. That’s why ensuring caregivers in the ALS community receive the support and assistance they need is critical.
We know finding ways to optimize treatments and care, and increasing access to care, helps people with ALS live the way they want with a better quality of life. That’s where multidisciplinary care comes in.
Dr. Ileana Howard is the Medical Co-Director of VA Puget Sound, an ALS Association Certified Treatment Center of Excellence, and will be joining us at our ALS Nexus conference to share her insights while exploring actionable steps to dismantle barriers to access, from advocating for policy changes to fostering community partnerships, to ensure everyone living with ALS has access to state-of-the-art care.
ALS presents its own set of nutritional challenges that must be addressed when considering what makes up a healthy diet, and these challenges change as the disease progresses. As we approach the end of National Nutrition Month, we wanted to take a look at some of the many nutritional needs for people living with ALS and how they are sometimes different.
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.
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.
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.
"I feel the more people that use their voices, the more attention we will bring to ALS, and the closer we will be to finding treatments and one day at a cure." Katie Adams is an advocate for people living with ALS, like herself.
For people living with ALS and their families, the holiday season can bring its own set of challenges, both physical and emotional. But the season can still be a time of togetherness, peace and joy. Here are some suggestions to help manage changes and enjoy this holiday season.
No two cases of ALS are the same, nor are any two ALS caregiver experiences. While there is no one-size-fits-all answer to every caregiver question, there is often much to be learned from people who are, or who have been, a caregiver for someone with ALS. As National Family Caregivers Month comes to a close, we wanted to take a moment to highlight some of the advice, resources, and support available for ALS caregivers all year long.
When Tony got diagnosed with ALS, he and his wife Karen turned to each other to figure out their path forward, and they found they were better when they could face it together. The role of ALS caregiver wasn’t what Karen had planned, but together with Tony and their family, they set about figuring out this “new normal.”
For someone facing the challenge of becoming an ALS caregiver, there are many paths to gaining the knowledge and experiences they need to care for someone with the disease. Finding accurate and timely information can play a key role in equipping those impacted by an ALS diagnosis with the skills they need to provide the best possible quality care.
While veterans with ALS are entitled to benefits, they don't always receive them. But Earnest Hill, former member of the U.S. Air Force, is dedicating his life to changing that.
Over the past years we’ve had many conversations and interviews with ALS caregivers, and while no two experiences are ever alike, there are often similarities and storylines throughout. In recognition of National Family Caregivers Month, we thought we would share some of these caregiver stories and advice we’ve collected along the way.
For National Family Caregivers Month, we are featuring David and Laura DuBois. David is living with ALS, and his wife Laura is his primary caregiver. As simple as it might sound, their conscious decision to truly LIVE with ALS is what has allowed them to face each challenge and each day, together.
November 1 marks the beginning of National Family Caregivers Month. There are many ways to help caregivers and families impacted by ALS. The ALS Association put together a list of ten ways to make a difference in the lives of family caregivers.
For National Respiratory Care Week, The ALS Association has compiled a list of the wide variety of free, reliable information and resources for everyone affected by ALS.
We recently launched Nationwide Connect, monthly online support groups for both male and female ALS caregivers designed with one thing in mind—enhancing quality of life and supporting families impacted by ALS regardless of where they live. They follow support group best practices and join people together who are dealing with similar experiences.
Medicare open enrollment begins Sunday, October 15, the annual period when individuals may add, drop, or make changes to their health insurance coverage, with selections remaining in effect for the next full year. After the open enrollment window closes on December 7, plan changes can only be made after a qualifying life event.