caregivers

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…

Have you ever been touched by the actions of one of your doctors? I hope we all have experienced special moments with our care providers because these times break down the authoritarian nature of medicine and allow us to interact as people rather than patients. A heartwarming moment took…

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…

As an advocate for the multiple sclerosis community, people often ask me what it’s like being a mother while living with MS. My quick response is, “Joyous!” But I understand the questioner is looking for something more. They want to know how to…

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…

My journey in life has allowed me to connect with and meet people from all over the world. For this, I am blessed. I’ve met many diagnosed with MS and other chronic illnesses. All of our experiences are different and we have varying levels of support. A little while…

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…

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…

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…

Editor’s note: Patient columnist Laura Kolaczkowski attended the 31st annual Consortium of Multiple Sclerosis Centers conference in New Orleans. We’re facing a major problem in the near future due to a shortage of researchers for multiple sclerosis, according to Jerry Wolinsky, MD, Bartels Family and Opal…

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…

I couldn’t help but smile when I saw “MS Comprehensive Care: A Team Sport“ listed as the title of the John F. Kurtzke Memorial Lecture at the opening of the Consortium of MS Centers 2017 Annual Meeting. Kurtzke, according to the program, was a strong advocate of the…

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…

“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…

I am well aware of the importance of a mother, or a mother figure, and the significant role she has in the lives of her children and community. I am blessed to have an awesome mother who has profoundly shaped my life. It is her love, guidance, patience…

Caleb Taylor, a second-year University of Kentucky Law School student, has chosen a challenging way to raise awareness and raise funds for multiple sclerosis, a disease that changed his family’s life forever when it struck his mother. Taylor will pedal across America as part of the Bike the US for…

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…

As the challenge of living with multiple sclerosis (MS) often leaves patients feeling isolated and depressed, the biopharmaceutical firm EMD Serono has launched an online storytelling platform called My Story. The platform is designed to be an empowering and therapeutic support resource for patients and caregivers in their struggles with MS.

Caregivers are in the spotlight during MS Awareness Month and, as it draws to a close, one man with multiple sclerosis is calling for everyone with the disease to recognize them. Dan Melfi, who lives in the…

A number of multiple sclerosis organizations have joined Biogen in the second year of the #MySupportHero initiative. The social media campaign is a way for people with multiple sclerosis (MS)  to thank those who give them the care,  encouragement, attention, and strength they need. The initiative runs through the end of March, which…

Thoughts of love were brought to the forefront of many people’s minds on Valentine’s Day, which is widely celebrated by couples both young and not so young. They usually buy cards and enjoy romantic dinners. In our…