caregivers

The University of British Columbia (UBC) and the VGH & UBC Hospital Foundation have received a CA$33.8 million ($25.24 million) donation to establish a multiple sclerosis (MS) research network focused on developing next-generation cell-based treatments. This private donation, by an unnamed British Columbia-based philanthropist, is thought to be the…

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…

Last weekend was a busy one. On Friday, I had to drop my eldest son at school at 5:30 a.m. for a field trip and then pick him up at 11 p.m. A nap wasn’t in the cards, I’m sad to say, and at some point in the evening, I…

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…

The number of nurses in the U.K. with a specialty in multiple sclerosis (MS) care rose significantly between 2018 and 2021, but these specialists on average carry a patient caseload that’s 50% higher than recommended, as a pronounced rise in MS cases was also noted, the MS Trust reports.

Photo courtesy of Laurie Lambert Day 4 of 31 This is Laurie Lambert’s story: The first thing I did was worry. When my friend told me of her MS diagnosis, I thought: she has always been the sharpest member of our circle — the one with the most expansive…

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…

The psychological distress of a parent whose child is found to have multiple sclerosis (MS) may directly impact the quality of life of the child. That’s according to a new study that revealed a worse health-related quality of life (HRQoL) in MS children after their diagnosis. These findings support…

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,…

Well, there’s a new carer at home, actually, but town sounds so much cooler. Like an old-time Western sheriff! My dear wife, Jane, has taken a few days off to attend an ayurvedic yoga retreat, so I’m without the care of She Who Really Must Be Obeyed. (I’ve…

It’s been a decade since the opening of the UK MS Register, which sought to gain a better understanding of how multiple sclerosis (MS) affects patients’ everyday lives, with a goal, according to its website, toward fueling campaigns for “fair, relevant policy and improved health care.” Now, the…

The COVID-19 pandemic brought extra strain to already-stretched neurology services across the U.K., markedly affecting multiple sclerosis (MS) care and patients’ health, according to a report from the MS Society. These findings were consistent with those of a 2020 report from U.K.’s Neurological Alliance showing that the pandemic…

The Adira Foundation received nearly $750,000 from the Bristol Myers Squibb Foundation to improve care and access for the roughly 5,000 multiple sclerosis (MS) patients living in rural areas of Maryland, North Carolina, Virginia, and West Virginia. Intended to enhance the access and delivery of specialized care to…

The Adira Foundation is inviting people with neurodegenerative diseases and their caregivers to join a grant proposal review committee. A nonprofit foundation, its mission is to unite people affected by some of most common neurodegenerative diseases — namely, multiple sclerosis, amyotrophic lateral sclerosis, Alzheimer’s disease, Huntington’s disease, and…

More than half of people with multiple sclerosis (MS) who require an informal caregiver have experienced abuse or mistreatment by that caregiver, according to a study conducted in California. The study, “Validity and Reliability of the Scale to Report Emotional Stress Signs–Multiple Sclerosis (STRESS-MS) in Assessing…

She held me in a fierce hug. It had been a year since I had held my mother so closely. I rested my chin on her shoulder and silently thanked God. As I looked up, my eyes met hers. I knew what question was coming, along with the weight of…

One of the conditions of being released from the hospital a couple of weeks ago was that I had carers come to my home four times a day for six weeks. I realized it was for the best of intentions, but it still felt, albeit deep down, that these…

The Christopher & Dana Reeve Foundation has launched virtual support groups for people living with paralysis — either due to multiple sclerosis (MS) or other conditions — and their caregivers. Paralysis in some or all limbs occurs in MS and other neurological disorders, often exacerbating feelings of social isolation,…

Day 15 of 31 This is Angela Griffin’s story: I was with my daughter-in-law when she was first diagnosed with MS. I watched the doctors perform a lumbar puncture. As soon as I saw their faces, I knew what they would be telling her. Those precious few…

Rising average temperatures may lead to a worsening of symptoms in people with multiple sclerosis (MS) and a greater need for hospital care, according to a preliminary study by researchers in the U.S. Its findings will be presented at the virtual annual meeting of the American Academy of Neurology,…

The National Multiple Sclerosis Society was among 56 nonprofit organizations chosen by Bristol Myers Squibb to share an $11 million award supporting projects that promote health equity and access to better care across ethnically and racially diverse and underserved communities in the U.S. Other awarded projects aim to promote diversity…

This is disturbing and, unfortunately, not surprising. More than 50% of people with advanced multiple sclerosis reported they’ve been mistreated by a family member or friend who cares for them, according to the results of a survey published last September by researchers at the University of California, Riverside. Much…

Multiple Sclerosis News Today is excited to announce a new initiative called “31 Days of MS,” in recognition of Multiple Sclerosis Awareness Month in March. We will feature a range of stories from people in the MS community, from patients to caregivers to family members.  The…

The recently launched BRAINTEASER project focuses on the use of artificial intelligence (AI) technology to improve the care of patients with multiple sclerosis (MS) and amyotrophic lateral sclerosis (ALS). An initiative of a European consortium, BRAINTEASER could benefit patients, caregivers, and clinicians by enhancing the ability to predict,…

A $25,000 contest is inviting entrepreneurs who have multiple sclerosis (MS), or take care of someone with MS, to pitch their non-therapeutic solutions for people with the neurodegenerative disorder. The virtual Innovation Challenge, which takes place in March 2021, is part of a collaboration between patient-powered platform Lyfebulb…

Majority of MS Patients in US Report Mistreatment by Caregivers in Survey This is a serious issue, but it’s not as pervasive as this headline makes it appear. The survey looked only at the treatment of people with advanced MS, the 30% of people with MS who need help…