One day, you’re full of energy, doing chores around the house, running errands, and spending time with loved ones. The next, you’re laying down with your feet up, heating pad across your abdomen, asking your friend or family member to bring you an easily digestible, diary and gluten-free meal and if they would switch the… Continue reading Your Illness Does Not Make You a Burden
Tag: caregiver
Signs of Caregiver Burnout and How to Prevent It
When a loved one is suffering from a chronic illness or disability, it can be difficult to navigate their care as well as your own. If you’re one of 40 million caregivers in the United States providing care to adults over the age of 18, you may be experiencing an increased demand of your time,… Continue reading Signs of Caregiver Burnout and How to Prevent It
“I feel it needs to be told”: Member Cathy shares a memory
Last year, we spoke with Cathy (Catrin) about her experience transitioning into a caregiver role for her husband, Fred, who was living with bulbar onset ALS. Shortly after that, Fred passed away, and to mark the year of his passing, Cathy recently shared the following memory. Here’s what she had to say… “I have been… Continue reading “I feel it needs to be told”: Member Cathy shares a memory
“Hope makes us strong.” Cathy opens up for National Family Caregivers Month
Are you a caregiver or do you know someone who cares for a loved one? For National Family Caregivers Month, we caught up with Cathy (Catrin), who became a caregiver for her husband after he was diagnosed with bulbar onset ALS in January of 2015. As she learns to manage the dual roles of wife… Continue reading “Hope makes us strong.” Cathy opens up for National Family Caregivers Month
Steve Saling’s patient-conceived ALS project
Steve Saling (SmoothS), a longtime ALS member of PatientsLikeMe, has made it his mission since diagnosis to help other pALS live a better quality of life. He’s founded the ALS Residence Initiative, which has grown from the first fully-automated, vent-ready ALS Residence in Chelsea, Mass., at the Leonard Florence Center for Living, to multiple residences across the… Continue reading Steve Saling’s patient-conceived ALS project
Patients as Partners: Gus and Maria talk partnering with your caregiver
The 2015-2016 Team of Advisors recently introduced the Partnership Principles. They’ve been sharing personal stories about these principles in action to kick-off conversations on partnering with all sorts of people — medical students, clinical trial coordinators, and “normals.” Today, Team of Advisors member Gus along with his wife and caregiver, Maria, share about their special relationship and how… Continue reading Patients as Partners: Gus and Maria talk partnering with your caregiver
2016 National Compassionate Caregiver of the Year Award now accepting nominations
A warm smile. An assuring word. A difficult message delivered with empathy. Has a doctor or other healthcare professional ever made a difference in your life? If you know someone who embodies compassionate care, our partners at The Schwartz Center for Compassionate Healthcare want to hear about it. Their National Compassionate Caregiver of the Year (NCCY) Award… Continue reading 2016 National Compassionate Caregiver of the Year Award now accepting nominations
ALS Blog: “Hope makes us strong.” – An interview with ALS caregiver Cathy
Meet Cathy (Catrin), who became a caregiver for her husband after he was diagnosed with bulbar onset ALS in January of 2015. As she learns to manage the dual roles of wife and caregiver, she has turned to the PatientsLikeMe community for help, encouragement and hope. We took time to connect with her recently and… Continue reading ALS Blog: “Hope makes us strong.” – An interview with ALS caregiver Cathy
Natalie shares her story as caregiver for her mother with Alzheimer’s disease
When was your mom diagnosed with early-onset Alzheimer’s disease? What was your mom’s diagnosis process like for you, for your mom, and for the rest of your family and friends? My mother, Maxine, was diagnosed with early-onset Alzheimer’s disease in April of 2010. She had been living on her own for about one year, following her… Continue reading Natalie shares her story as caregiver for her mother with Alzheimer’s disease
Joining the effort to find answers from brain diseases and injuries
In honor of Veterans Day, we wanted to share two stories from our partner, One Mind. First, the story of retired Colonel Gregory Gadson, who was wounded during his military service and was living with post-traumatic stress (PTS). PTS affects more than 7.7 million Americans each year. The second video shares the story of Roxana… Continue reading Joining the effort to find answers from brain diseases and injuries