Jen LeVasseur’s caregiver journey began while she was still a newlywed. Her husband, Noel, was diagnosed with ALS just 17 months after their wedding. Noel has two daughters from a previous marriage, Jen two sons. (They embrace the Brady Bunch, blended family analogy.) We sat down with Jen earlier this year to talk about caregiving and how ALS impacts the holidays.
Lynn Hogan became a caregiver early in her relationship her fiancé, Steve Ziegler. “On our first date we went out and he was sitting next to me and he said, ‘You might notice -- don't get weirded out or anything -- but you might notice some twitching, weird stuff going on with my arms. We don't know what it is yet. But one of the things it could be is ALS,’” she recalled.
The Greater New York Chapter of The ALS Association has commemorated a pivotal caregiver from ALS history with a luncheon named in honor of Eleanor Gehrig, the wife of famed baseball hero Lou Gehrig.
Maya Bulmer was thrust into the role of caregiver at a young age. Like many seniors in high school, Maya spent the 2018-2019 school year filling out college applications, readying for the next chapter in her life.
November is National Family Caregivers Month. Join The ALS Association in honoring caregivers throughout the month. “Being a caregiver of someone with ALS is incredibly challenging, and my role hasn't even begun to be that physical yet,” said Jen LeVasseur. Her husband, Noel, was diagnosed with ALS in 2017, just over a year after they were married.
National Malnutrition Awareness Week kicks off today. The ALS Association has resources available to help make sure people living with ALS do not struggle with malnutrition as the disease progresses.
The ALS Association is pleased to share results from our recent community survey. We were interested in hearing about programs and services that people reported as being important, reasons why people were not accessing some programs, major challenges, and issues around medications. Information gained from the survey will be incorporated in to care services planning activities and will be used to inform strategic planning, priority setting, program outcomes, and program improvements.
Even though ALS is a disease that has its own health implications, people with ALS are not immune from other injuries or medical issues. Individuals with ALS can still get sick or hurt themselves in ways unrelated to the disease. Or, people with ALS might have complications directly related to the disease that warrants a visit to the hospital.
ALS can be confusing, scary, embarrassing, and overwhelming – for people living with the disease as well as for the youth within their families. Young people need age-appropriate details about ALS to help reduce some of the fear and uncertainty surrounding the disease.
This is the fifth in a series of posts from people living with ALS who are featured in our #VoiceYourLove campaign. Lorene composed this message using assistive communication technology with a visual-tracking system. She typed the words, one letter at a time, using her eyes.
I was diagnosed with ALS in January 2014, at the age of 53. I was an oncology nurse for 32 years and had just completed my master’s degree in nursing and passed the boards to become a nurse practitioner when I was diagnosed. Being a nurse practitioner had always been a dream of mine, but I was unable to use my master’s degree at all because of ALS.
People living with ALS come first in everything we do. We’re dedicated to providing people fighting ALS and their families and friends with the critical information, support, and resources they need to live full lives and better meet daily challenges.
There’s no sugarcoating it. ALS is terrible. Unlike many fathers this Halloween, I couldn’t carve a pumpkin with my kids. I also couldn’t help them put on their costumes or take them trick-or-treating.
This weekend, people across the country will pause to reflect on and celebrate the economic and social value of American workers. And on Monday, many of them will enjoy a paid holiday off from work.
For people living with ALS and their caregivers and family, every day adds up. ALS is a journey that begins months, even years, before a diagnosis. Because there’s no definitive test for ALS, doctors must run through a battery of tests, ruling out other potential syndromes, conditions, and diseases before making a diagnosis of ALS.
Dr. Rahul Desikan is incredible. He’s a prominent researcher of neurodegenerative diseases, including ALS, as well as a loyal husband, father, son, and friend. And on February 17, 2017, in a cruel twist of fate, he became a person with ALS.
A diagnosis of ALS takes its toll in many ways. The person living with ALS eventually loses the ability to move, eat, speak, and breathe. But the effects of this disease don’t end there. Witnessing a loved one’s experience and being a caregiver have profound effects on family members and children, too.
Erin Brady Worsham, an award-winning artist based in Nashville who has lived with ALS for more than 24 years, takes her philosophy about life from golf.
Bad things happen to good people every day. That’s just the nature of life. But it doesn’t mean we stop living and loving. My ALS story officially started on a warm fall afternoon in September 2001. I had been having difficulties with speaking and swallowing for several months. After more than two months of seeing about a dozen different medical professionals, and having more tests than one can imagine, I sat in the small examination room of a local neurologist.
