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.
The recent ruling by the Supreme Court to overturn Roe v. Wade is a wakeup call for all of us who care about the rights of people being able to make decisions about their own healthcare. No matter your political perspective or leanings, any erosion of the rights for individuals and their loved ones to set the course for their own treatment in consultation with their medical professionals is of great concern.
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.
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.
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.