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…

“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…

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…

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…

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…

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…

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…

There is a more heavyweight subject I could inflict on you lot, but let’s put our feet up this week. Even I can do it with the one leg. My wife, Jane, and I celebrated our 30th wedding anniversary last Friday. You’d have thought we’d have planned a big…

For the few of you lot lucky enough not to know about intermittent catheterization, it’s shoving a thin bit of plastic up the old (in my case) urethra so that you can pee. I am well aware of how bad plastic is for the planet, but in my open-and-shut…

Before anyone in the U.S. asks who this Jeremy Clarkson fella is, know that petrol heads in your country know exactly who he is. Indeed, the Brit motoring show “Top Gear,” at its height a few years ago, made him and his fellow presenters stars the world over. It…

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…

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…

Multiple sclerosis and its associated fatigue negatively affect school performance, mental health, and physical and social functioning in children and adolescents with the disease, according to a review study. Pediatric-onset multiple sclerosis (POMS) also was associated with negative effects on social functioning, mental health, and quality of life in…

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…

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…

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…

Like many comic book geeks, I’ve been sitting shiva for the last few days, mourning the passing of Stan Lee. I never met the man in person, but I know many people who have. They said he was warm, open, and enthusiastic. He was a passionate and tireless creator…

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…

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…

When a progressively debilitating disease like multiple sclerosis (MS) causes a patient to feel physically “wiped out” after a simple daily activity, such as a shower, it is of utmost importance for these individuals and the people in their support system to understand how they can maintain independence for…

Christmas is just around the corner, and that’s why many people are on the fruitless quest for Fingerlings or hocking an organ to buy the new iPhone. Both might be the “hot” presents of the season, but neither of them holds a candle to the great gifts we…

The MS load we carry is heavy. Some of us, unfortunately, must carry it alone. But many of us are fortunate to have someone with whom we can share the weight. It’s National Family Caregivers Month and a new survey shows just how heavy that load can…

Spasticity in multiple sclerosis patients can be eased through a combination of botulinum toxin type A (BoNT-A) injections and rehabilitation. However, caregiver support is required to keep patients on this treatment, according to results of a retrospective analysis. Spasticity, a muscle control disorder characterized by tight or stiff muscles, is a major MS symptom. The condition is significantly detrimental to patients’ quality of life, affecting their general mobility and balance. Several oral anti-spasticity drugs are available. However, “treatment of spasticity in MS is frequently challenging because of the complex clinical picture and the undesired effects associated with oral therapy, such as fatigue, dizziness, and hypotension,” the researchers wrote. Previous studies show that BoNT-A, a toxin that blocks nerve activity in muscles, is an effective therapy for the management of MS-related spasticity. The long-term effectiveness and persistence of BoNT-A use in patients with MS-related spasticity, however, remains poorly investigated. The research team in Italy proposed “to investigate the long-term persistence to treatment with BoNT-A for MS-related spasticity and the determinants of BoNT-A discontinuation in daily clinical setting.” In total, the researchers reviewed data from 185 patients, out of which 121 were considered in their final analysis. They observed that, at the end of the follow-up period, 44% of the patients in the analysis were still being treated with BoNT-A, but 56% had discontinued treatment. Overall, these results “confirm the beneficial effect of combining BoNT-A injections with rehabilitation and highlights the crucial role of caregivers for achieving better long-term outcomes in people with MS suffering from spasticity,” the team concluded.

Most people who care for multiple sclerosis (MS) patients are happy to be caregivers, but they admit that their own emotional and physical health — as well as their financial security — suffer as a result. That’s according to the online vsMS Survey, supported by Sanofi Genzyme, which assesses the physical…

“Coping with Caregiver Burnout When Caring for A Person with Neurodegenerative Disease: A Guide for Caregivers,” published in the April 2017 issue of the Archives for Physical Medicine and Rehabilitation, is intended to give better insight into caregiver burnout, and what might be…

While few of us choose to become caregivers, many of us are faced with the task if a loved one is diagnosed with a chronic disease. The transition is a strange time for everyone involved, as the nature of the relationship changes for both the caregiver and patient. However, it is…

A new randomized and controlled trial is recruiting multiple sclerosis (MS) patients to investigate the effect of a mindfulness-based telemedicine intervention program on patients and their caregivers. The clinical study’s protocol was recently published in the journal Trials, titled “A telemedicine meditation intervention for people with multiple sclerosis…