living with MS

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…

You’ve just “biked for MS” or your friends have just “walked for MS” and they’ve collected a lot of pledges. Maybe you sent out letters to your friends asking them to donate a little cash to help find a cure for this disease that has impacted our lives.

I love getting together with family and friends, volunteering at the golden retriever rescue, attending events and keeping my calendar full. It is fulfilling to make plans, but as many of you with MS know, it is a paradox. The very plans that bring hope and happiness also…

Many of you are considering making the switch to Ocrevus (ocrelizumab) as your disease-modifying therapy for multiple sclerosis. This is a switch I made recently. There are so many questions and unknowns about how this treatment might help me, and I’m trying to…

It took two years and many doctors to finally receive my MS diagnosis. Frequent painful sensations, such as burning, itching, stabbing, and tingling in my arm and shoulder, led my providers and me on a wild-goose chase in search of other problems. When my speech and balance were…

I live at the beach, but I can’t get onto the beach — not easily, anyway. My MS means that I need to use a beach buggy; sort of an electric wheelchair with super-big tires, to get around on the sand. For others who are not as fortunate as…

Horseback Riding Plus Standard Care Can Help MS Patients Improve Balance, Other Symptoms Absolutely, it can. I don’t need to read this study to know that because I’ve been there, done that. About five years ago, at 64, I got back on a horse for the first…

Beth Kantor, 42, now knows what it really means to get down in the dirt. For the past four years, she’s volunteered as a first-aid assistant at the annual Twin Cities MuckFest, a fundraising event that the National Multiple Sclerosis Society organized in suburban Minneapolis. But this year, Kantor decided it…

Our bodies are amazing creations, lovingly handcrafted by an infinitely powerful and creative God, and I never get tired of learning facts about how they work. For instance, did you know that 25 percent of adult bones are in the feet? Or that more bacteria are found…

Having not stood on a stage and attempted stand-up for some 30 years, I’m not in the habit of writing jokes for myself. Obviously, these days, I’d be a sit-down comic anyway, but I think my opening line would be a doozy: “As I self-catheterize, I’m probably the…

I’ve just added an app to my iPhone that’s designed to track how I’m doing day-to-day with my MS. Not only can the data it collects be useful to me and to researchers, the app also is fun to use. The app is called elevateMS. It’s…

In this chaotic world in which we live, it is hard to be still, to sit with nothing but our thoughts. There is always something to worry about or preoccupy our minds that never allows us to rest in the present. As I sit on the patio and write,…

Advocacy comes in many forms, and recently I wrote about what advocacy by individuals might look like. The other type of advocacy we have going for those of us with multiple sclerosis is the work done on our behalf by a large number of nonprofit organizations. Let…