caregivers

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…

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,…

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 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…

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…

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…

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,…

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…

In a nationwide survey of caregiver abuse and neglect among Americans with advanced multiple sclerosis (MS), more than half of respondents reported some form of mistreatment, with psychological and financial abuse being the most common. Having a caregiver with a mental illness was the greatest risk factor for mistreatment, the survey…

Access to mental health services for children with a rare disease or other medical or mental health disorder is the focus of an online survey by therapists at Children’s Friend, an affiliate of the Seven Hills Foundation. The foundation, based in Worcester, Massachusetts, runs a variety of programs through…

I like my husband. I like his generous heart, his humility, and his penchant for Tommy Bahama shorts, T-shirts, and flip-flops. Sure, I love him. Yet our love has changed throughout our 23-year marriage. We have traded passion for patience and lust for loyalty. While each exists, they are…

Last updated April 25, 2023 In June, the U.K. marks Carers Week, which got me thinking about how a chronic illness diagnosis often affects a patient’s entire family.  Most often, patients are the focus of a diagnosis, and the people around them are almost forgotten. The…

It was 4 a.m. and a crisis was brewing. I knew that this time, I’d be a nincompoop if I tried to deal with the situation myself, as I’d faced spectacular failures recently with the poop bit. I was still groggy from having taken diazepam to deal with my…

Belong.Life has launched a free and anonymous social network app to offer support for people with multiple sclerosis (MS), their caregivers, and healthcare professionals. The app is called BelongMS and is now available…

Caring for children with multiple sclerosis (MS) can affect the mental health of their mothers over the long term, a study has found. The study, “Increased mental health care use by mothers of children with multiple sclerosis,” was published in the journal Neurology. People with…

People with multiple sclerosis (MS) and their caregivers appear to be just as satisfied with a video evaluation given by a neurologist using telemedicine as they have been with those done through an in-person visit, a review from the American Academy of Neurology reports. The review, “Teleneurology is neurology,”…

Cognitive and neuropsychiatric problems caused by relapsing-remitting multiple sclerosis (RRMS) — such as memory and processing issues, depression, and irritability — are the main source of strain among life partners of MS patients with mild disability, a study finds. The study, “Caregiver strain among life partners…