Daily living

Well, 460.75 miles (741.5 km), to be exact. When I wrote about April Hester in late September, the headline on my column was “She Has MS and She’s Planning to Hike 500 Miles.” Well, she did it, hiking the Palmetto Trail from Walhalla, in the South…

Thanksgiving is just a few days away, so I thought it would be a good time to repeat a few of my airline travel tips and add a few new ones. Get the wait-time app Needless to say, you need to get to the airport early on busy travel…

The weekend should have started on Friday. My sister-in-law is over from France and there was the first gathering of the clan in a local hostelry. I took the sensible option of staying in as there was an even bigger do at our place on Saturday night. My…

Are you ready for a disaster? Wildfires in the wine country of Northern California exploded so quickly that survivors say they didn’t know they were threatened until flames were nearly at their doors. Hurricane Harvey forced more than 9,000 people into Houston’s main evacuation shelter. It…

I love photographs and have them strewn about and framed throughout the house. From grandchildren and goldens, holidays and travels, each holds a cherished memory. I am happiest taking photos and have cultivated somewhat of a hobby doing so. As I have gotten older, I have (gratefully) discarded the…

Some months ago my wife and I went out for dinner at our favorite sushi place. As is frequently the custom at sushi restaurants, the table setting included chopsticks. No forks. I’ll be painfully honest here: We are both woefully unskilled at using…

Maintaining friendships can be challenging for those with a chronic illness. It may be difficult for friends to understand the changes that take place because of MS. Some changes are quite sudden and visible, others sneak in slowly. Increased fatigue or pain, I find, are most difficult for friends…

  About 10 years ago, in the days before my MS, I had a whole raft of self-imposed jobs. As a new age man, one of these was doing the washing. Yes, this combated the usual bloke’s role in a heterosexual household, but to counter this, I was very…

Some days are easier than others, and some days are just not easy at all. Today I find myself in the latter of the two. It’s Monday morning, and my Sunday was insane: insanely busy, insanely fun, and insanely difficult. While…

For those of us in the workforce, our MS can sometimes make a workday challenging. The Americans with Disabilities Act allows for an employee to request reasonable accommodations from their employer. Included in the act are three broad accommodation categories. One focuses on the hiring process, and…

It looks like a dog’s leash, but it isn’t. I put in “dog’s lead” and “disabled apparatus” into my first Google search and fittingly was taken down into a rabbit’s warren of equipment for psychically challenged dogs. Who knew? It’s a nifty bit of kit for moving your leg…

I am an avid dog lover and very involved in volunteering with the golden retriever rescue here in Southern California. On any given day, you will find my 8-year-old rescue, Abby, here along with two to three other happy golden retrievers. I may have  rescued Abby physically, but there…

When talking about MS research, we tend to focus on drug development because improved therapies, and even the cure for MS, will come from pharmaceuticals. But what do we know about other MS research that doesn’t involve taking a pill or enduring an injection? I’m talking about those…

I was going to write about something else, then my MS got in the way. Intellectually, I know MS is very up-and-down, but often when the down hits, I think the worst has happened. I went to my exercise class this week and struggled. Got home and recovered.

April Hester has MS. She was diagnosed in 1996, just after she turned 20 years old. Like many of us, April has balance and fatigue issues. Her legs can become tired, her foot sometimes drops and she falls a lot. But unlike many of us, April and her…

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…

Today is Falls Prevention Awareness Day, an annual campaign that occurs every Sept. 22 to encourage multiple sclerosis patients and others prone to falls to give a little extra thought on how to identify factors for falls. The event, coordinated by the National Council on Aging, will be the 10th in an annual series that has taken place since 2007. The National Multiple Sclerosis Society is contributing to the event by presenting research into MS-related falls, as well as resources to identify risk factors of falling. Research shows that 50 to 70 percent of MS patients report falling at least once over a six-month period, with about 30 percent falling several times. Many people with MS also get injured when they fall, adding significantly to the burden of MS. Studies show that typical MS symptoms, such as poor gait and balance, or the loss of proprioception — the perception of where body parts are in a space — contribute to falls in MS, which typically occur while doing everyday activities at home. To better understand why people with MS fall, and how to best prevent it, current research focuses on better detection of falls. One approach is to use automatic fall detection devices, which patients can wear. A 2015 symposium on gait and balance in MS focused specifically on falls. The meeting concluded that although knowledge and prevention strategies have improved, much remains to be done. In that regard, the International MS Fall Prevention Research Network helps researchers collaborate on falls research. But neurological symptoms are not the only factors at play. Psychological issues make up another area in the risk spectrum, says the NMSS. Fear of falling or overconfidence both contribute, as does inactivity. Besides the guide, the NMSS has also developed the Free From Falls program, containing eight modules with webinars, downloadable educational material and video-guided exercises. These materials teach patients about biological, behavioral and environmental risk factors for falling, while also offering tips and strategies that may reduce the risk of falls.

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,…

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…

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…

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…

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 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…

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…

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…

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…

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…