living with MS

And so the good news is that if you have MS, then you can get an enhanced annuity in the United Kingdom. That is a higher payment for the rest of your life than if you were well. That’s because our illness may reduce life expectancy. A recent survey…

The past two weekends found me venturing off on my own for some mini-road trips. Two weeks ago, I volunteered at Bike MS a hundred miles away from my house. I interacted with others during the day and then returned alone and happy to a quiet, peaceful hotel room.

This is a story about sports. It’s not really about MS, it’s about playing football. But, then again, it is about MS. Stick with me and you’ll see. The story is about a young man named Jake Olson. Olson is a student at the University of Southern California,…

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…

Probiotics Consumption May Improve Certain Disease Parameters in MS Patients, Study Suggests Probiotics (bacteria that help move food through your gut) have been used for years to help treat stomach disorders such as irritable bowel syndrome, inflammatory bowel disease, and some types of diarrhea. More recently, researchers have…

I posted this meme on social media last week with the caption “Current Life Status,” hoping a laugh might help matters. I’m sorry to say things didn’t improve afterward. I’m not a Debbie Downer or a Sad Sack by nature, and I don’t often write about my struggles here…

Another of those things I was never warned about. Maybe if I’d been assigned a local MS nurse at the beginning of my diagnosis, then eruptions out of my pants could have been averted instead of finding out the wet way. I only discovered my local MS nurse…

Back in May, when I updated everyone about my Lemtrada treatment at six months post-infusion, I began with a question my wife asked: “Do you think you’re walking better?” And, I thought I was. Maybe. Just a little. I was walking a bit more smoothly, my left foot…

Probiotics may improve the health of people with multiple sclerosis (MS) by reducing disability and improving inflammatory and metabolic parameters, an Iranian study shows. Live microorganisms linked to health benefits, known as probiotics, have long been known to help chronic disease patients. In a previous study of people with major depressive disorder, probiotics treatment for eight weeks improved patients’ depression and metabolic parameters. More recently, authors investigated the impact of probiotics on a group of MS patients, looking not only at mental health and metabolic indicators, but also disability scores. Researchers at Tehran's Shahid Beheshti Hospital recruited 60 MS patients, divided them in half, and assigned 30 to take a probiotic capsule and 30 a placebo once a day for 12 weeks. The probiotic contained the healthy bacteria Lactobacillus acidophilus, Lactobacillus casei, Bifidobacterium bifidum and Lactobacillus fermentum. Researchers measured patients’ health parameters and disability scores at baseline and after treatment. The results showed that probiotic intake after 12 weeks improved MS patients' disability scores (assessed by the expanded disability status scale, EDSS) when compared to placebo controls. Although this improvement was statistically significant, it was not clinically significant — which is defined as a change of 1.0 point or more at EDSS levels less than 5.5, or 0.5 point or more at EDSS levels greater than 5.5). Moreover, benefits were also detected in several mental health parameters – Beck Depression Inventory, general health questionnaire-28 (GHQ-28), depression anxiety and stress scale. Consuming probiotic capsules also significantly decreased insulin levels and high-density lipoprotein (HDL) cholesterol in circulation, researchers also found. It also lowered certain markers of inflammation and oxidative stress, such as serum high-sensitivity C-reactive protein (hs-CRP) and malondialdehyde (MDA).

The Patient-Centered Outcomes Research Institute has awarded $38 million in grants for five projects that compare the effectiveness of different multiple sclerosis treatment strategies. A key aim of the research is to improve knowledge about the therapies to help doctors and patients choose the healthcare option that best meets patients’ needs. The…

(Editor’s note: Tamara Sellman continues her occasional series on the MS alphabet with this column about terms starting with the letter H.) Symptoms of MS Hemiparesis (and hemiplegia) When someone with MS experiences weakness along one entire side of the body, they…

I find it funny when people ask how and why I am so positive and happy. Am I supposed to be sad and negative just because I have multiple sclerosis? There are certainly days when the pain and/or side effects get me down, but gratefully, these are exceptions…

How many hours do the pharmaceutical companies think we have in our day? I ask because almost all of them have come up with very slick tools to use, particularly mobile apps, to help us improve our daily lives with MS. Not coincidentally, these apps also provide their…

Courage is a recurring theme in my column. Many of us are familiar with the cowardly lion from the Wizard Of Oz. The lion itself is an animal known for its strength, beauty and valor. Thus, to think of a lion as a coward appears to be a…

It’s 7 in the morning, and it’s raining cats and dogs. I need to walk our dog and the thought of it is not very appealing. We live in a condo, so this activity requires getting dressed, squatting down to feed Joey, squatting again to get him hooked…

I had always envisioned that I would be an active and healthy grandparent when the time came — not one with a disability. I was diagnosed with primary progressive multiple sclerosis (PPMS) in the summer of 2010, which also happened to be the same year my first grandchild…

Older Women with MS Age Better Than Their Male Counterparts, Canadian Survey Finds I have to say that, as a 69 year old man with MS, this report is a bit depressing. In fact, one of its findings is that older men are depressed while older women…

Laughter really is among the best medicines when it comes to multiple sclerosis, says Yvonne deSousa, an MS patient, humorist and author who plans to share her tips on integrating humor into daily living, in a free webinar organized by GeneFo. The webinar, which will also discuss research into laughter therapy for MS, will take place Sept. 13 at 1 pm EST (6 pm in the United Kingdom). Scientists are increasingly aware that emotions play a crucial role in determine progression rates and outcomes of chronic diseases. This has led researchers to study how therapies including humor and laughter might contribute to improve patient's well-being. DeSousa, a native of Cape Cod, Massachusetts, has been nominated for a WEGO Health Hilarious Patient Leader Award. She promises to offer hands-on advice on how to “find the funny, de-stress, and enjoy a good laugh” despite the reality of living with a chronic and debilitating condition such as MS. The online lecture will also focus on the biology of how laughter can improve patient outcomes. Research shows that laughing affects immune and endocrinological processes, while increasing tolerance to pain. Laughter also counteracts anxiety and depression. These factors, deSousa pointed out, are all crucial in MS, and she should know. The comic has taken a humorous approach to her own illness from the start, and now runs a blog that recently made the Top 50 MS Blog list. She's also written a book — called MS Madness — on the topic. The webinar will also introduce a research project led by Dr. Theodore Brown that now seeks MS patients for a study of how laughter therapy affects mood, stress and self-efficacy. Researchers hope these types of studies will encourage doctors to incorporate humor-based practices into common care protocols for MS. Details of the research program will be shared with webinar attendees. Those wishing to participate in the free webinar — and receive a video recording by email later — can register by following this link.

I was going to write about something else this week and then … I got STONED! Those aren’t words I thought I’d ever write. I’d been a kid during the 1960s, but later on had duly done my literary homage by mainlining Jack Kerouac (yes, I know that…

Am I having an MS relapse? I saw that question asked the other day on one of the social sites I follow. At first, I thought, “Gee, doesn’t everyone with MS know when they’re having a relapse?” Then I realized that for several years after I was diagnosed, I…

I have always had the travel bug, and I’ve been to a myriad of countries and cities around the world. From far-away foreign cities to exotic beach locales, I find great pleasure in refining my cultural literacy. That refinement took a back seat after my diagnosis and subsequent…

What better time of year to talk about getting good sleep than heading into the fall season, which is followed by the dark days of winter? Although we are not furry creatures who curl up in a cave to sleep through the winter, many of us wish we could do…

Grief can cut like a knife and pierce a hole in your heart that never fully heals. I’ve heard people say they prepare themselves after learning about a loved one’s terminal diagnosis, but how? How do you prepare to say a final goodbye? You can brace…

The role that diet and lifestyle have on the course of MS is a matter of debate. There is a great deal of conflicting information on the topic, and patients may need to look beyond their neurologist or primary care physician to create a dietary approach to MS.

“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…

Older men with multiple sclerosis (MS) have more harmful lifestyles than older women with the disease, concludes the Canadian Survey of Health, Lifestyle and Aging with Multiple Sclerosis. Treatment for depression could go a long way to promoting more healthy lifestyles for all older MS patients, authors suggest. The study, “…

Dignity Medical Solutions and Quest Specialty Products will jointly market the “Timo Solution” – a novel technology to manage urinary incontinence (UI), a condition that frequently affects patients with multiple sclerosis (MS). Such patients report two main types of UI: urge incontinence, caused by nerve damage in the part of the…

We celebrated my dear friend’s pastoral anniversary on Sunday, and the service was dynamic. Although I do not want to make this column a religious sermon, I hope to use the message from the guest speaker to inspire you. It does not matter what faith, color, or creed that…

The Multiple Sclerosis Society of Canada — with input from both experts and patients — has developed a "wellness toolbox" with strategies to help multiple sclerosis (MS) patients cope with their disease. Wellness is becoming a big area of research, particularly in patients with chronic diseases such as MS. With an estimated 291 cases per 100,000 inhabitants in 2013, according to the Multiple Sclerosis International Foundation, Canada has the world's highest incidence of MS. While pharmaceutical and scientific research are advancing in the therapeutic area, studies are also underway to determine the contribution of wellness factors such as nutrition, physical activity and emotional well-being -- to quality of life for MS patients. With that in mind, the Toronto-based MS Society of Canada conducted a Wellness Survey, which led to the launch of the Hermès Canada | MS Society Wellness Research Innovation Grant. These grants are awarded to scientists conducting research on MS and wellness factors. The University of Saskatchewan, which received one such grant in 2016, investigated the effect of Pilates in people with MS. The study recruited 30 MS patients. Half took Pilates classes twice a week and massage therapy once a week, while the other half only did once-a-week massage therapy. Results showed that patients who took Pilates classes saw an improvement in their overall condition, compared to patients in the control group. To create its wellness toolbox, the MS Society of Canada received input from MS patients about strategies that have helped them manage the disease and live a full life.

It was a government letter; I opened it with due trepidation. A call for jury service, so not bad news and a chance to do my civic duty. But at this point I was stumbling to the toilet nearly every 15 minutes. This and needing a cab to get…