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.
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.
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.
ALS is a very different disease. Therefore physical therapy treatment has to be different than what you would consider typical physical therapy. You can't fight it off or beat it with exercising. In fact, the wrong kind of exercising can actually make things worse.
In recognition of National Volunteer Week, we are shining a spotlight on some of The ALS Association’s amazing, dedicated volunteers, and highlighting the incredible work they are doing to support our mission.
The YCare youth caregiving training program was developed to meet the needs of young caregivers who care for the adult in their life living with ALS. At the International Alliance of ALS/MND Association meeting in late 2022, the creators of the YCare program and a team of local experts presented on how they are translating the YCare program, in some cases quite literally, for use in South Africa.
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.
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.
Connecting ALS recently sat down with Sarah Trott to learn more about her experience as an ALS caregiver for her father who recently lost his battle with ALS, and better understand the challenges with grief she has experienced and the steps she is taking to overcome her terrible loss.
We recently spoke with Joan and Tony Nolting about their personal experience living with ALS and attending an ALS Association Certified Center of Excellence. After experiencing mild breathing symptoms and slurred speech, Tony was diagnosed with bulbar onset ALS in September of 2020, just five days after his 63rd birthday.
Connecting ALS recently sat down with Ann Larson to learn more about her experience as an ALS caregiver for her beloved husband Dave, and better understand the challenges she encountered during their three-year journey with the disease.
My husband’s ALS journey is not unique. It started with weakness in his left leg, and a few other puzzling issues which he began to note around 2010. We didn’t do anything about it until October 2012, when things got more puzzling.
When your loved one receives a diagnosis of ALS, you transition into a new role as a caregiver. This may happen gradually over time, or quickly, catching you off guard and possibly unprepared. Regardless of where you are in your caregiving journey, who better to accept advice, guidance and emotional support from than other families and caregivers who are living through similar experiences?
My husband's ALS diagnosis didn’t explain the symptoms I was seeing. I searched the internet late at night and concluded that he also had Frontotemporal Dementia (FTD). Symptoms of FTD include a loss of empathy and executive function, an increase in inappropriate actions, a lack of judgement and inhibition.
