living with MS

July was unusually hot in much of the Northern Hemisphere. So, pull out your electric fan and use it to help your multiple sclerosis (MS) beat that heat and humidity, right? Maybe not. A study recently published in the Annals of Internal Medicine reports that using a fan to…

An ongoing experiment at the International Space Station may help identify triggers for multiple sclerosis (MS) and Parkinson’s disease by studying how nerve cells and immune cells interact when exposed to microgravity. Using patient-derived cells, researchers will study the way nerve cells grow, survive, and change their gene…

Over the past several weeks, I’ve been using an app called Floodlight to track my ability to live with my multiple sclerosis (MS). It measures things such as my balance, finger dexterity, walking speed, and cognitive ability. It even knows if I’m keeping myself shuttered in my apartment or…

Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “Multiple Sclerosis-related Vertigo: What Can You Do?” from Nov. 23,…

I recently saw a greeting card that read, “You never know how strong you are until being strong is your only choice.” No truer words. While I am grateful for my strength, there are moments when I would like another choice. Maybe it is a mind game. Perhaps I would…

After a week of temperatures at 95 degrees or more making it too hot to swim, today was comfortable enough for me to get back into our condo’s pool. The water temperature was perfect and cool enough to keep me refreshed. I had the best workout I’ve had this season:…

Neuronal Circuit Likely Behind Chronic Itch in MS and Other Diseases Identified I often read posts on multiple sclerosis social media groups complaining about chronic itching. This mouse study may have found a reason for that symptom. The researchers hope that finding the cause will eventually lead to a…

Living with MS can sometimes feel like you’re performing a one-woman (or man) show. Think about it. How many times have you pretended to be OK when you didn’t feel so hot? Have you ever shown your loved ones a brave face instead of upsetting them? Ever caught yourself acting…

It’s 1 p.m. in the U.K., and it’s 90 degrees Fahrenheit. I can hardly move due to the heat. My left hand is typing this. The rest of my body has shut down. Tomorrow is forecast to be the hottest July day in recorded history in the U.K. I had set…

Living with multiple sclerosis (MS) is a process of loss — of mobility, brain function, and independence. We can lose relationships and jobs. For most of us, these losses are forever. A woman who commented today on a column I wrote a few weeks ago said that she is…

Celgene and the Multiple Sclerosis Association of America (MSAA) are working together to bring the “MS MindShift: A New View of MS” campaign, which is raising awareness about the importance of brain health in multiple sclerosis (MS), to the 37th Annual QuickChek New Jersey Festival of Ballooning in Readington,…

Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “How Occupational Therapy Is Improving My MS Home Life” from April 15, 2018.

People whose advanced progressive multiple sclerosis (MS) limits their mobility can strengthen their lower limbs and improve life quality by engaging in regular standing exercises in their homes, a U.K. study into physiotherapy programs for this patient group reports. The study, “Assessment…

Urinary tract infections (UTIs) are a problem for a significant number of people with multiple sclerosis (MS). As many as three in 10 may wind up needing treatment for one. So, I was concerned when I read a New York Times article reporting that UTIs are becoming harder…

Have you ever read something and thought, “This is me, this is my MS”? It happened to me today as I read a post by Rachel Horne on the BartsMS blog. Horne writes about how some of us adapt to our MS diagnosis better, or at least differently, than…

Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “How I Manage Stress With MS” from July 10, 2018. Whether physical, psychological, or…

There is nothing worse than being diagnosed with a disorder that you know nothing about. While it was extremely difficult for me to take in, my parents also were affected. I had never thought about how my parents felt about my multiple sclerosis (MS) diagnosis and what I have…

Does your doctor consider what you’ll have to pay when prescribing your medications? A few months ago, I wrote that some people are skipping doses of their meds because they can’t afford their out-of-pocket costs. In that column, one of the suggested solutions was to talk to your doctor…

Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forums. This week’s question is inspired by the forum topic “Do Noise and Crowds Tend to Negatively Affect You More with MS?”…

The glow of the fireworks bathes the surrounding trees. A kaleidoscope of blue, yellow, and red illuminates the night sky. It is a day of picnics, parades, and pyrotechnics. It is the Fourth of July, when Americans celebrate gaining their independence from Great Britain. I can relate to celebrating…

I love to travel and see new sights, but my multiple sclerosis (MS) mobility problems present particular challenges. Over time I have accumulated my own set of travel tips. Perhaps some of the following might make your next trip easier. Airline travel My trips almost always involve airline…

This summer marks three years since the Multiple Sclerosis Association of America (MSAA) launched its free online forum, designed to support, inform, and uplift members of the multiple sclerosis community. The organization encourages all affected by MS to make use of this resource. Called My MSAA Community, the platform…

Last night in bed, my calf muscles started cramping. Again. Usually, it’s just my left leg, but last night it was both. The pain wouldn’t ease with my usual stretching routine so I reached for my little bottle of cannabidiol (CBD) oil. I’ve been experimenting with CBD oil on and…

Legos, it seems, are more than just a kids’ toy. People with some neurological conditions, including multiple sclerosis (MS), are using those little, colored building blocks to build better lives for themselves. An article in the latest issue of Brain & Life uses Kathleen Jordan as one example. Jordan,…

Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic, “How Chiropractic Therapy Can Help Multiple Sclerosis Patients,” from June 1, 2018.

I am frequently commended for my demeanor. For my strength amid pain and adversity. For my optimism and happy disposition. For making the most of my circumstances. I love my steadfast faith. I love my fierce determination. I love my decision to combat pain and adversity with hope. I love…

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.

I’ve been living with MS for nearly 39 years and I’ve never seen the notes my neurologist has written during my office visits. My neuro did hand me a thick folder of notes several years ago. It had material dating back to my diagnosis in 1980, but when we…

I’ve used an electric scooter for nearly 20 years. At first, I only used it when I knew I’d be walking a lot. Now, it’s every day. I used a cane for several years before the scooter. I resisted using both, however, and I’ll bet that many of you who…

Multiple sclerosis (MS) is a chronic illness accompanied by various symptoms. Depression is one of the most common. Depression is a shape-shifter and affects one’s life in different ways. The dark hole Imagine one week everything is fine. You’re known for being a social butterfly…