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Tips for Having an Enjoyable Holiday Season
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.
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Chanel Hobbs: Living with ALS, In Her Own Words
Chanel Hobbs is a vibrant 54-year-old residing in Chester, Virginia, with her husband and high school sweetheart, Lamont. Together, with their daughters Angel, 24, and Deja, 23, they’ve cultivated a beautiful life filled with love and shared adventures, despite her ALS diagnosis. Determined to spread awareness of what it’s like to live with the disease, she is sharing her family’s personal journey in her own words.
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Learning From Others: ALS Caregiver Resources and Support
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.
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“She’s Crazy Strong Inside”—A Young Woman’s ALS Caregiver Journey
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.”
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Education and Training for ALS Caregivers
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.
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Helpful Advice from One Caregiver to Another
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.
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“I’ll Do This for You”—A Caregiver Story
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.
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10 Ways to Help a Family Impacted by ALS
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.
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Using the Power of Partnership to Save Money for People Living with ALS
Reducing the financial burdens of ALS is part of our commitment to making ALS a livable disease until we can cure it for everyone. We are working hard to mitigate the economic impacts of ALS in a variety of ways. For complex financial or insurance issues, we sometimes turn to our partnership with the Patient Advocate Foundation (PAF).
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Finding Help and Support for ALS Caregivers Nationwide
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.
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Engaging the Whole World to End ALS
Cathy Cummings, executive director of the International Alliance of ALS/MND Associations, believes someday we’ll see a world free of ALS/MND. She also believes we won’t see that day unless we stay committed to working together—everywhere—to make it happen. "We'll never solve ALS until we include the whole world,” she says. “A strong partnership among all organizations dedicated to fighting ALS can move the needle on finding a cure and in making ALS livable."
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Breaking Down Barriers for ALS: On the Quest for a Cure
In order to make ALS a livable disease and ultimately find a cure, we need to increase the number of clinical trials and make it easier for more people to participate in those trials. No one knows this better than Dr. Merit Cudkowicz, Director of the Sean M. Healey & AMG Center for ALS and Chief of Neurology at Massachusetts General Hospital.
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Perspectives on Physical Therapy from a Person Living with ALS
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.
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The Power of Partnership and ALS Care
Dr. Tawfiq Al-Lahham is a neurologist with a subspeciality in neuromuscular medicine. We discuss with Dr. Al-Lahham how expanding multidisciplinary care is helping to make ALS a livable disease for everyone, everywhere until a cure is found.
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A Focus on Proper Nutrition While Living with ALS
This week is Malnutrition Awareness Week, an opportunity to remind everyone of the role proper nutrition plays in a person’s health and the importance of early detection, intervention and treatment of malnutrition for people living with ALS and their caregivers.
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