caregivers

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…

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…

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…

Just before a deployment, all the teams in my military unit received a large supply of medical gear that included two medical backpacks, or aid bags. As the team’s medic, I elected not to bring them, because I already had a bag that I liked, and the new ones looked…

“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 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…

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…

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…

This morning, at an unholy hour, our family awoke to the sound of alarm bells. Well, not bells, but rather the gentle yet insistent sound of one of Alexa’s alarms. Actually, we changed the name of our bedroom device to Ziggy, so we can’t simply roll over, still…

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…

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.

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…

Ah, after living the majority of the last three years of my life indoors, I do tend to spark conversation with my carers. But if I keep quiet, they’re more than happy to do so, too, as they repetitively deal with the rigmarole of getting me ready every morning. It’s…

Living with multiple sclerosis (MS) is hard. I know this is hardly a revelation, especially to those of us who struggle with it on the daily, but I felt like it needed to be said. I was scanning through articles on this site recently, seeing what my fellow…

Rexall Care Network, a nonprofit organization that is part of the Rexall Pharmacy Group, has launched a campaign to bolster the MS Society of Canada‘s initiatives to support caregivers of people living with multiple sclerosis (MS). The Bubble Campaign, which began March 27 and runs through April 30,…

You might be wondering why a Yank like me is writing about multiple sclerosis care in the United Kingdom. It’s because a survey caught my eye the other day that I think deserves a closer look. The survey, conducted by the MS Trust and reported by MS News…

Photo courtesy of Manuela Lama Day 1 of 31 This is Manuela Lama’s (@manuela.p) story: Caring for someone with multiple sclerosis can be challenging, exhausting, and stressful. As a single mother of a daughter with MS, I have been not only physically tired, but, even more…

In truth, my long, bad Friday started on Thursday afternoon at 5 p.m., although it seems wrong in the middle of a black, midwinter night to still call it afternoon. Still, if you live in Alaska, summer nights never even start! (OK, I’ll stop musing about the vagaries of Earth’s…

Leaders of the International Progressive MS Alliance have proposed a global research strategy to find better ways to care for people with progressive forms of multiple sclerosis (MS). They detailed their proposal in the paper, “Charting a global research strategy for progressive MS—An international progressive MS…

I’ve been meaning to do this for a while. My wife, Jane, who’s also my primary MS carer, went away for a few days last week, and with absence making the heart grow fonder and all that, I thought I’d strike — if she came back! Fortunately, she did,…