March is National Nutrition Month, and since maintaining proper nutrition is so important for people living with ALS, we wanted to highlight the critical role of one member of the ALS care team: the registered dietitian (RD).
For many people living with ALS, the decision to have a feeding tube placed, if or when it’s needed, is an important one, and as with many decisions that must be made during an ALS journey, it’s not of the one-size-fits-all variety. In recognition of Feeding Tube Awareness Week, we wanted to share some common concerns and misconceptions about them as well as some resources to help.
As no two cases of ALS are the same, nor are any two ALS caregivers. There is no one-size-fits-all answer to each caregiver question, but that is not to say there isn’t much to be gleaned from the experiences of others.
For someone facing the daunting 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. Regardless of how you prefer to learn, one thing everyone can benefit from is a reliable source of information, which can be found in the new ALS Association Caregiver Education Course.
Kristina met Lamar Woody in high school, although it wasn’t until college when they really found their true connection. Lamar loves to tell everyone Kristina was the prettiest girl in school. Little did she know then she would not only become his wife and mother of their beautiful daughter, Natalie, but she would also become his ALS caregiver.
Only those living through the experience first-hand truly understand the challenges of being a full-time caregiver, particularly for someone living with ALS. The ability to complete basic daily tasks can be overwhelming and the need for help is great. Finding ways to help and show support for the caregiver in your life can make a huge difference for them, and for you.
Medicare open enrollment begins this Saturday, the period when individuals may add, drop, or make changes to their health insurance coverage, with selections remaining in effect for the next full year. Understanding exactly what’s available will help you make the critical decisions you need.
October is National Physical Therapy Month, a time to shine a spotlight on the work physical therapists do and recognize the vital role they play in helping their patients manage challenges with mobility. And for people living with ALS, a physical therapist (PT) is a critical member of the multidisciplinary care team providing the specialized care they need.
As ALS progresses, the challenges of maintaining good nutrition as well as avoiding malnutrition change. With the support of caregivers and a multidisciplinary care team, these challenges can be managed to provide both the best nutrition and best quality of life at all stages.
The urge to support, or be supported, is often accentuated at times of great challenge, or uncertainty. As anyone living with ALS or being an ALS caregiver knows, this disease can bring plenty of both. That’s why The ALS Association provides support groups in every state.
In some way, shape or form, we are all list people. Some people are of the pen and paper list variety, others have taken to keeping notes on their phone or online calendar. And even those who would claim to not keep lists probably have an idea of some “to dos” they keep in their head. For ALS caregivers, far too often the last thing on their lists is themselves. So, here’s a list of ALS caregiver “to dos” for their own self-care and wellness.
Making a concerted effort to keep your mind healthy is just as important as keeping your body healthy, particularly for people living with ALS and their caregivers.
We spoke with Dr. Melinda Kavanaugh, clinical social worker and associate professor at the University of Wisconsin-Milwaukee, to understand more about young caregivers and the potential harms caused by the lack of quality of sleep they receive and what can we do about it.
Multidisciplinary care has been proven to extend life, helping people living with ALS maintain independence longer and enjoy improved quality of life when provided with options for symptom management, assistive technology, adaptive equipment, education, care services and emotional support.
Decreased mobility is a challenge faced by every person living with ALS, and helping people improve their mobility is a key to making the disease livable. It’s also a key to empowering people to live their lives as they want while reducing or preventing physical, emotional and financial burdens, and to enjoy the leisure activities that enrich their lives.
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.
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.
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.
