Like a lot of people disabled by a chronic disease, I don’t do well with unsolicited advice. The kind that suggests there is something I can do about my disease, that I’m not doing enough, not looking hard enough for a solution, that they would do better. I’d prefer they…
caregivers
I’ve been blessed with extraordinary caregivers and people who have made my journey with multiple sclerosis (MS) profoundly different. When I was diagnosed, my world collapsed. Everything I knew about myself, my body, and my future became uncertain. I had fatigue and strange sensations — my body…
When Jill Blackburn’s daughter, Sierra, was diagnosed with pediatric multiple sclerosis (MS) at the age of 15, Blackburn had trouble finding sufficient support and resources. She eventually joined a relevant Facebook group, which she evolved into a nonprofit organization, the Pediatric Multiple Sclerosis Alliance. She now serves as…
Experts are calling for tailored strategies to enhance the diagnosis, treatment, and monitoring of older people with multiple sclerosis (MS). As people with MS live longer, age-related biological changes increasingly complicate diagnosing and managing the disease in older adults. No universal framework currently guides how to address these unique…
Four Canadian nurses are among the 11 recipients of this year’s International Nightingale Awards, which support innovative projects aimed at improving care for people with multiple sclerosis (MS). Presented annually by the International Organization of Multiple Sclerosis Nurses (IOMSN), the awards are open to MS nurses living…
Sheila Hofmeister and her husband, Rick, stand behind the wheelchair of their son Ben Hofmeister, whose three sons, Sterling, Jule, and Monte, are pictured from left to right. (Photos courtesy of Ben Hofmeister) Day 30 of 31 This is Sheila Hofmeister’s story: Note: Multiple Sclerosis News Today columnist…
“Caregiving,” a two-hour documentary film centered on the daily experiences of six family and professional caregivers in the U.S. will premiere on PBS and its media outlets in June. Executive produced by Bradley Cooper, the documentary is inspired by his own experience caring for his father, who was diagnosed…
The law firm Kalfus & Nachman will host a special event to raise funds for multiple sclerosis (MS) research, patient care, advocacy, and increasing disease awareness. The fundraising will be held Friday, March 28, at 1:00 p.m., in the back parking lot of Kalfus & Nachman’s building, 870…
A young Michael Lama Jr. poses with his sister, Desiree Lama, at Christmastime years ago. (Photos courtesy of Michael Lama Jr.) Day 3 of 31 This is Michael Lama Jr.’s story: Growing up, my sister Desiree and I used to play video games and sports in our grandma’s backyard.
A new website aims to provide support to caregivers of people with multiple sclerosis (MS). The site, MS Care Partner Connection, brings together information on how caregivers can care for themselves while tending to those living with the disease, how to navigate the healthcare system, and how to…
I was diagnosed with relapsing-remitting multiple sclerosis at 17 years old, during my senior year of high school. At that time, the diagnosis was the least of my worries because my top priorities were senior year activities and college preparation. The truth, however, was that I didn’t comprehend what…
I was diagnosed with multiple sclerosis (MS) in 2014. Over the past 10 years, my MS has been managed by five healthcare providers. That’s not how I envisioned my MS care. I’ve had the same primary care provider for almost 20 years, and I naively thought I’d be…
Can Do Multiple Sclerosis is putting together a two-day program to help newly or recently diagnosed patients and their caregivers learn more about multiple sclerosis (MS), meet others with the disease, and find strategies to adapt to a new lifestyle. Called Take Charge, the free program will…
My mom always wished for a son and a daughter. Ten years after I was born, her dream became a reality with the arrival of my baby brother, Michael. Because I was the only child for so long, I had never considered becoming a big sister, nor did I understand…
Almost all of the nearly 700 people with multiple sclerosis (MS) in Italy who responded to a patient survey reported at least one unmet MS care need — ranging from insufficient access to primary care, social interactions, assistance, doctor-patient relationships, and information about the neurodegenerative disease. More than half…
A Kessler Foundation research scientist will use a multiyear, $704,054 federal grant to study care barriers, cardiovascular risk factors, and accelerated brain aging in Latino multiple sclerosis (MS) patients, the nonprofit healthcare organization announced in a press release. Cristina A. F. Román, PhD, an investigator with Kessler’s Rocco…
Remote coaching sessions to support the mental and emotional health of informal multiple sclerosis (MS) caregivers, coupled with online information, showed significant benefits after four months, according to a pilot study. These coaching sessions — known as psychoeducation — focused on information, support, and strategies for caring and planning…
Welcome to “MS News Notes,” a column where I comment on multiple sclerosis (MS) news stories that caught my eye last week. Here’s a look at some of what’s been happening: A good report for Vumerity Final results are in from the EVOLVE-MS-1 clinical trial for patients with…
The National Multiple Sclerosis Society (NMSS) again has certified Hackensack Meridian Neuroscience Institute’s Center for Multiple Sclerosis and Related Diseases at Hackensack University Medical Center as a multiple sclerosis (MS) comprehensive care center. In addition to meeting the NMSS’ core requirements, the certification’s renewal also recognizes…
iConquerMS, a research initiative where people affected by multiple sclerosis (MS) contribute their health data and ideas, is expanding its research program to include caregivers of people with MS. Established in 2014 by the Accelerated Cure Project (ACP), iConquerMS has launched a new website and research…
There are a lot of things that I’m afraid of. That seems to come with the territory when you have a chronic disease like multiple sclerosis (MS), or when you’re a parent. At the same time, I don’t have any phobias that I’m aware of. To date, I…
Octave Bioscience has raised $30 million in financing to help accelerate commercialization efforts for its precision care program for people with multiple sclerosis (MS). “We have made significant progress in deploying our solution for multiple sclerosis patients,” William Hagstrom, founder and CEO of Octave, said in a…
I’ve always liked the phrase “go with what you know.” I suppose I understood it to mean “stick to what you’re good at” or simply, “stay in your lane.” Recently, though, I stumbled on a slightly different meaning that I like even better. “Use knowledge you already have as a…
Guest columnist Lori Lebson completed her PhD in neuroimmunology at the University of South Florida. After completing her doctorate, she continued her education as a National Multiple Sclerosis Society Neuroimmunology Postdoctoral Fellow at Johns Hopkins. Lebson has more than 10 years of pharmaceutical experience and serves as the head of…
The online platform DrTalks is offering a free virtual summit this summer aimed at helping multiple sclerosis (MS) patients and their caregivers better manage daily life with the progressive neurodegenerative condition. The event is slated for July 5-11, and has more than four dozen speakers lined up. Talks…
Cariloop has teamed up with Walgreens to provide support services at select neurology-specialty pharmacies to people with multiple sclerosis (MS) and their caregivers. Through its caregiver platform, Cariloop offers services such as professional counseling and cloud-based tools to help families manage challenges and plan for caregiving-associated activities.
Dr. April Bee’s mother taught her, through words and actions, to embrace people for who they are. (Courtesy of Dr. April Bee) Day 25 of 31 This is Dr. April Bee’s story: Mama was bold and audacious. She cried with me when I cried. She laughed at things I…
It’s been a couple weeks since my last column, and things with my mother have proven more challenging than we expected. She’s had another minor procedure to stop fluid from building up in her chest, but she is progressing with her rehab and continues to gain strength. Hopefully, we’ll…
The National Multiple Sclerosis Society‘s (NMSS) Partners in MS Care program has designated the multiple sclerosis center at Hackensack Meridian Jersey Shore University Medical Center as a Center for Comprehensive MS Care. With the designation, New Jersey now has two Comprehensive MS Care centers serving multiple sclerosis…
In this installment of our “Expert Voices” series, Multiple Sclerosis News Today asked psychologist Amy MB Sullivan to answer some of your questions related to implementing integrative medicine in multiple sclerosis care. Sullivan is a board-certified staff clinical health psychologist and the director of behavioral medicine at the Mellen…