There are a lot of things that I’m afraid of. That seems to come with the territory when you have a chronic disease like multiple sclerosis (MS), or when you’re a parent. At the same time, I don’t have any phobias that I’m aware of. To date, I…

This headline is a bit of a cheat. OK, it’s a big cheat. When you’ve been writing a column for five years, there’s immense satisfaction when you’ve finished it each week. There’s even more when it’s passed through the editing process. Sometimes this can get somewhat tricky. The trouble is…

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,…

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,…

So, yes, I’ve been away for four weeks. Anybody miss me? Well not away as such. There are places with hoists — even a specialist camper van you can hire here in the United Kingdom — but matching that with a profiling bed makes for quite the elusive Venn…

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…

Marriage is hard. It is also the most beautiful, sacred, and honest of all my experiences. Our vulnerable reality is a far cry from the blissful naivete of our wedding day. We had no idea how trying our future would become or how deeply our devotion would grow. I credit…

Even at a low level of disability, people with multiple sclerosis (MS) have substantial indirect and informal caregiving costs due to disease progression — with unemployment markedly adding to the economic burden, a Spanish study reports. The study, “Economic burden of multiple sclerosis in a population with low physical disability,” was published in the journal BMC Public Health. MS has significant impact on health-related quality of life, with disability and fatigue — two hallmarks of the disease — hindering patients' ability to work or study. This often results in early unemployment. As MS progresses, many individuals often need the support of caregivers to perform daily life activities. Limited information is available on MS-associated economic burden imposed on patients by the costs of informal care and loss of employment. To fill this gap, Spanish researchers evaluated the cost burden of indirect and informal care for 199 people with MS. Participants (mean age 43.9 years, and 60% females) were followed at 19 MS clinical units across Spain. Among the participants, 172 (86.4%) had relapsing-remitting MS, and 27 (13.6%) had primary progressive MS. The Expanded Disability Status Scale (EDDS) was used to determine each individual’s level of disability. EDDS scoring is done by a trained neurologist, who quantifies a patient’s disability on a scale of zero to 10, in 0.5 increments.  EDDS also is used to monitor changes in disability levels through the course of MS. The greater the EDDS score, the higher the disability level. The team used the 23-item MS Work difficulties questionnaire (MSWDQ-23) to assess the level of hardships participants experienced at their workplace. A patient-reported survey, the questionnaire highlights the extent of psychological and cognitive, physical, and other external difficulties experienced at work by people with the disease. MSWDQ-23 scores range from zero to 100, with a higher score correlating to more significant workplace difficulties. The study population had a median EDDS score of 2, and a median MSWDQ-23 score of 31.5, indicating an overall low level of physical disability. Despite this, MS was found to have a marked impact on the individuals’ work and academic activity. At the time of MS diagnosis, 70.6% of the participants were employed. However, at the start of this study, 9.6 years later, the employment rate among the participants had dropped to 47.2%. The retirement rate increased from zero at the time of diagnosis to 23.6% at the time of study visit. Most participants retired at a mean age of 43.6 years — and 95.7% of them cited MS progression as the reason for retirement. Among the student population, 90.9% reported absenteeism in the year before the study visit. During the same time period, 30.9% of employed participants were absent from work. Overall, 10.1% of all participants took sick leaves during the prior year. Being absent from work, and early retirement, impose several indirect costs in this study population, the researchers found. Sick leave due to MS resulted in a mean annual cost of €416.6 (US$473.59), while work absenteeism accounted for €763.4 (US$867.83) yearly. Early retirement due to MS added an additional mean annual cost burden of €5,810.1 (US$6,604.92). The annual costs per patient due to premature work disability or pension increased to €1,816.8 (US$2,065.34). Caregivers accompanied 72% of the patients for the study visit. The researchers noted that participants' spouses reportedly spent a minimum of more than 200 hours annually in providing care — more than a full-time job. A total 28.1% of participants required paid professional support for their daily activities, such as person to do housework and a physiotherapist. Patients also reported the use of assistive devices and adaptations. Crutch or walking stick use was reported by 10.6% of participants, while 8% had some home adaptation to help in their daily activities. Use of non-reimbursable devices was reported by 21.6%. The mean annual cost of informal caregiving, including activities by professional staff, was €1,328.7 (US$1,510.46). Use of assistive devices added an additional €736.6 (US$ 837.37) yearly. “MS is responsible for a substantial economic burden due to indirect and informal care costs, even in a population with low physical disability,” the researchers said. “Effective therapeutic interventions to improve the management of early symptoms as well as implementing workplace strategies focused on job retention may be essential to decrease the high economic burden of MS,” they concluded.

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.

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…

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…

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…

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…

Family Caregiver Month is observed each November, and it is estimated there are more than 90 million family members in the U.S. giving full-time care to people who have complex needs. In recognition of the work of the multiple sclerosis caregiver community, pharmaceutical company Genentech, a subsidiary of Roche,…

Palliative care helps to ease the symptoms of serious illnesses, providing people with cancer and those with other life-altering diseases, like multiple sclerosis (MS) or cystic fibrosis, a better quality of life, according to a study published in the Journal of the American Medical Association (JAMA). In the study, “Association Between Palliative Care And Patient…

A new study from France delves further into the life of multiple sclerosis (MS) caregivers and how they are perceived by MS patients, physicians, and the caregivers themselves. The report, “EVASEP: A Noninterventional Study Describing the Perception of Neurologists, Patients, and Caregivers on Caregivers’ Role in the Support…

Caregivers of people with multiple sclerosis (MS) are often burdened by fatigue and depression, even anger, all of which can unwittingly reduce the quality of care given — although they remain quite empathetic, according to a study. The research team at the University of Manitoba in Canada suggested that tending to the needs of people caring for…