caregivers

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…

Complementing its nationwide network of multiple sclerosis (MS) research and clinical services centers, the U.S. Department of Veterans Affairs (VA) has teamed up with the National Multiple Sclerosis Society (NMSS) to improve care for the veterans it serves and their families. The VA and the NMSS partnership was formalized…

MS Patient Groups React Favorably to Mayzent Approval, But Question Therapy’s Price Tag The approval of this medication is very good news. However, as the headline indicates, it comes with a relatively hefty cost. It’s approved for active secondary progressive multiple sclerosis (SPMS), and many of us have SPMS…

Caring for a loved one with multiple sclerosis (MS) can be exhausting, resulting in crankiness, sleepless nights, and excessive sadness, but many resources are available to help deal with the daily challenges of caregiving, said social worker, therapist, and wellness educator Lara Krawchuk. “Care partner fatigue is a normal and…

People who take care of their own needs while caring for a loved one with multiple sclerosis (MS) are more likely to be successful, and enjoy a mutually rewarding relationship. And the best way to ensure that partners’ needs are met is for them to communicate openly and often.

In recognition of March as Multiple Sclerosis (MS) Awareness Month, the Multiple Sclerosis Association of America (MSAA) is calling attention to the disease’s impact on families. More specifically, the nonprofit organization is focusing its awareness campaign on the topics “Relationships and MS” and “Spotlighting Care Partner Needs,” according…

Healthcare specialists for multiple sclerosis patients in the U.K. with advanced disease and challenging needs are getting support and recognition through a new program from the MS Trust. Called the Advanced MS Champions Programme, it will recognize six MS specialist “champions” working with people with advanced MS, and their families…

Nurses who specialize in treating multiple sclerosis (MS) patients in the U.K. are handling heavier caseloads than recommended or preferred, resulting in patients going without the necessary care and support they deserve, the MS Trust reports. Particularly, the 2018 report notes that newer treatments require more complex and careful monitoring. However, it…

To more widely recognize and help those caring for people with multiple sclerosis (MS) and other chronic diseases, Merck KGaA (known in the U.S. and Canada as EMD Serono) is expanding its global Embracing Carers program to include Brazil and possibly China. “Caregivers are a hidden pillar within the…

EMD Serono has launched MS On My Mind with a goal of making people more aware of the emotional toll that multiple sclerosis (MS) can have on patients and caregivers. Patients are invited under the initiative to go to the MSIsOnMyMind.com website and finish the sentence “MS is on my…

Can Do Multiple Sclerosis and Embracing Carers are collaborating to help caregivers better understand the effects of multiple sclerosis (MS), and to help them take better care of themselves. The collaboration enlisted Can Do MS, which delivers health and wellness education programs to families living with MS, to…