caregivers

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…

Cassandra Jefferson of Chattanooga, Tennessee, didn’t want to put her mother, who has multiple sclerosis, in a nursing home, but she had begun to realize that she might have no choice. The required care was getting to be too much for Jefferson, who worked long hours before rushing home to…

The journey of chronic illness has taught me that our families are greatly affected by our illnesses. Spouses, parents, siblings, and many others can attest to their personal stories of loving someone who is chronically ill. My inspiration for this week’s column was a discussion I recently had with…

In the first year after being diagnosed with multiple sclerosis (MS) in 1997, Ann Borsellino basically withdrew from life, rarely even leaving her bedroom. Knowing little about the disease, she assumed its relapses would soon rob her of any control over her body. They didn’t, and now Borsellino is involved with…

Can Do MS has launched an MS Path 2 Care initiative that aims to help people affected by MS  be more active partners in their healthcare experience. A national non-profit organization based in Avon, Colorado, Can Do MS delivers health and wellness education programs focused on exercise, nutrition, symptom…

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…

There’s a difference between being lucky and being blessed. I learned that difference in 1992, after giving birth to our son. Once the doctors counted 10 toes, 10 fingers and we heard the baby’s first cry, I remarked to my husband how lucky we were.

I pride myself on never lending power to my limitations, but when I became the primary caretaker for my husband after he underwent hip replacement surgery, my limitations were reached. Ten days later, I am slowly emerging as a somewhat functioning individual. As with most challenges, I tend…

“I’m sorry, these files take forever to copy,” the woman at the registration desk says, breaking the silence that had settled between us while she uploaded MRI scans from the CD I gave her moments earlier. “I know it can be a…

As patients, we deserve the best care for our MS and we should accept nothing less. I have had many years of difficulty trying to find adequate MS care since my diagnosis in 2010. I have gone from neurologist to neurologist, even before I knew my symptoms pointed to MS. My…

“What else is going on?” Matt, our family doctor of more than 15 years, asked. It was at the end of a mid-August appointment, one I’d made due to pain in my right shoulder, elbow, and hand. I wasn’t sure if it was related to MS…

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.

The plastic mustard bottle hurtles toward the kitchen floor. Like a statue I stand, mouth agape, as it somersaults in slow-motion through space. Only seconds before, I’d removed the top of the bottle to scrape one final dollop from it onto the sandwich…

The stress of caring for a family member with multiple sclerosis (MS) or another neurodegenerative disease may directly affect the quality of care, according to a study showing that poor caregiver mental health causes higher mortality rates among the patients they care for. The study, published in the journal Proceedings…

How can you care for your MS when a loved one is ill? You want to be able to care for others despite your own daily struggles. As unpredictable as MS is, what is predictable is that your life will be touched by the…

Father’s Day is Sunday, June 18, in the U.S. There are a lot of good fathers out there, but one I wanted to tell you about is my friend Jason Clark. He is a caring husband to his wife, Jenny, and an amazing father to his four children.

I am making the transition from multiple sclerosis patient to cancer caregiver. On May 11 my family’s world turned upside down when my husband of 41 years was diagnosed with advanced  pancreatic cancer. My caring husband, who has always loved and protected me, is now the one in…

To honor World MS Day, May 31, EMD Serono launched a multiple sclerosis care partner survey in collaboration with the International Alliance of Carer Organizations (IACO). The new survey comes after the initial results from a Merck study showed that the highest number of MS care partners are aged 18-34, and that…

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…

Genentech has rolled out a website to connect multiple sclerosis (MS) patients and caregivers with resources that can help them. The company unveiled GatherMS at the annual meeting of the Consortium for Multiple Sclerosis Centers in New Orleans. The event started May 24 and will end May 27. Genentech created GatherMS…