November 1st marks the beginning of National Family Caregivers Month, a time to recognize and honor the tremendous contributions of family caregivers. Caregiving for someone with ALS has a broad and lasting impact, in both daily life and long-term well-being.
It can be difficult to plan for the future when you are focusing on living in the present. But giving thought to what lies ahead can help you live your best life now and provide you, and your family members, with peace of mind going forward.
One of the common symptoms of ALS is a gradual weakening and loss of control of the muscles in the mouth and throat. These muscles are known as “bulbar muscles,” and some of the “bulbar symptoms” of ALS include difficulty speaking or swallowing. Learn more about managing speaking and swallowing when living with ALS.
I put it off as long as I could. I buried myself in friends’ lives, picked at frivolous problems and attended an excessive amount of events. I traveled for three weeks straight. I caught up on every T.V. show I’ve ever enjoyed. I cleaned and organized my entire home. And I sorted through every piece of clothing my children own, which took a full three days in and of itself.
This is a rapidly evolving situation and The ALS Association will continue to update you on how we are serving the ALS community throughout COVID-19. For the most recent information about COVID-19, The ALS Association recommends visiting the CDC and the World Health Organization (WHO) websites.
ALS advocates are pursuing an aggressive set of public policy priorities for people living with ALS and their families. These priorities include increased federal funding for ALS research, creating new pathways for expedited approval of promising treatments including the Promising Pathway Act and ACT for ALS, making permanent expanded access to telehealth, and increasing access to high-quality health care and veteran's benefits.
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.