Daily living

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…

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…

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…

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…

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…

Footwear and shoes and journeys have been in my info stream (and on my mind) a lot lately. First, I stumbled onto a very fine column about shoes and MS written by Jennifer Powell (Exchanging a Sole for a Soul). Her essay resonated…

Believe me, I enjoy being active. As I’m sitting in a chair or a wheelchair, it may not appear that way, but I do. I have multiple sclerosis, and the fatigue and difficulty of moving can make it extremely laborious to be active. The thought of going on…

Reading some social media posts the other day, I found myself humming a line from a late 1960s Arlo Guthrie song: “I don’t want a pickle. Just want to ride on my motor-sickle.” I didn’t think it was possible for someone with MS to ride a “motor-sickle.” It…

Myobuddy Products has enlisted a rising fitness star to help it publicize its new Myobuddy Massager Pro, a massaging device that can help anyone from an elite athlete to a person with a muscle condition such as multiple sclerosis. Dakota Rager, who qualified for the national Reebok CrossFit Games competition, is a former Army diver who beat out more than 200,000 men in several regional competitions this year. CrossFit is a workout regimen aimed at improving the body's normal functional movements. The Massager Pro takes a multi-pronged massaging approach, including vibration, heat and percussion therapy, or applying tension to the body. The device's benefits including soothing sore muscles and helping relax tight fascia, or connective tissue surrounding muscles. Myobuddy started an MS Support Program in May to encourage MS patients to try massage therapy and to advance research on the approach. The company said some MS patients report that the Massage Pro helps them sleep better by alleviating their restless leg syndrome. They also report that it relieves muscle tension and fatigue, it added. Myobuddy's website includes information on how to use the Massage Pro for any muscle group. Those with questions can get answers by emailing [email protected] or calling (844) 696-2833. Rager (@ragerdakota), who at 5’4’’ and 169 lbs. is built like a fireplug, said he uses everything he can to give him an edge in competitions. If a massage therapy device is powerful enough to help MS patients, then it can help him, too, he has decided. "I really love the Myobuddy Massager, and have been using it throughout my training," he said in a press release. "It has the perfect combination of vibration and power and really goes deep to soothe my sore muscles and relax my tight ones after rigorous workouts. I highly recommend it for anyone who wants their muscles to feel and perform their very best." At only 25, Rager is already ranked as one of the top 100 CrossFit competitors worldwide. He was just one of 40 men to participate in the Reebok CrossFit Games in Madison, Wisconsin, Aug. 3-6. "We've had a lot of highly influential people in the sports and fitness world deliver organic endorsements for the Myobuddy, and we're extremely grateful for that," said Lillo Furca, Myobuddy's founder and CEO. "We've spent so much time and energy perfecting our massager to ensure that it delivers optimal results. The testimonies are a testament to our team and to our product." The company loves to "hear about how we're helping people who put their bodies in extreme situations on a regular basis," he added.

Accessible housing is not optional for people with disabilities. Poverty and disability too often combine for too many people. It is one thing to know this double whammy exists intellectually. To see the impact in a person packs a visceral punch that cannot be denied. Think of how profoundly…

In my youth, I hitchhiked the breadth of North America ― Canada, from east to west. I had 16 first cousins in the country and only my parents back at home. My quest was to meet them all. Which I duly did. I traversed the whole of the Trans-Canada…

It's Wimbledon fortnight. The tennis signifies it's the height of the British summer. You usually can tell it's an English summer because it rains for two weeks. Not this time. It's baking hot and the hallowed grass can't handle it! If U.S. President Donald Trump is right and there is no such thing as climate change, the least he could do is supply the All England Tennis and Croquet Club with the formula for his resilient head of hair. Everything thrown at him does seem to just bounce off. It would make the perfect surface for these changing times. And what has this to do with MS? Well, it seems I've turned into Maria Sharapova. And, no, it has nothing to do with drugs or a penchant for wearing ultra short skirts! John Connor & Sean Meo having a smashing time. A friend was over who hadn't seen me in my natural habitat, i.e., at home, for a long while. "Is all that noise normal?" she asked my wife, "Is John in any trouble?" "No," my wife tersely explained, "That's what he's like these days!" I've found that heaving my lumpen carcass around is aided by a cacophony of grunts and groans. I can hear that it's not pleasant, but it is completely involuntary. I could move without making noise, but the sheer concentration needed would take mental resources away from maintaining balance. All pride goes before falling over! I live just a few miles from Wimbledon, but the only advantage this usually gives me is the knowledge if it's raining here, it's about to rain there. As a tennis nut, I can then get on with something else rather than watch it on TV. Getting tickets, unless you're willing to camp out in a queue for days, is nigh impossible. That is, it was, until I entered the wheelchair tennis fraternity. Somehow, I ended up on a database that puts me in a regular ballot for tickets. Don't get to go every year, but, hey, that's a lot better than not going at all! And last week, I was fortunate to get Centre Court tickets. If it had rained, unlike the other courts, it has a sliding roof, so the tennis rolls on unabated. Instead, it was a blistering day. Luckily, the wheelchair section is right at the top. The view is still excellent, but we were sheltered from the sun by the court's permanent roof. Previously, I've been on No. 1 Court, where the wheelchair area is superb. But I'd have been in direct sunlight. Five hours of that and I'd have wilted like a vampire. The added bonus at Centre Court was a disabled toilet only a few yards away and a concessions area nearby. We could get as many Pimm's cocktails as we wanted without queuing and missing game after game. The downside is that you are now fully aware of the exorbitant cost of the things: 8.50 pounds a go! We sipped, rather than guzzled, our way through the afternoon. My carer for the day was Sean Meo, a comic with whom I've worked for some 20 years. He is the most enthusiastic tennis fan I know. He also is a fitness fanatic and correctly has a low opinion of sugar. So, yes, I had to get my own ice cream! It was cheering to be physically close enough to get to the concessions area so that I could. The real bonus came at the beginning of the day. To get into Centre Court with a wheelchair, we had to go via the players entrance. The guard on the door said we had to wait five minutes because an "old lady" was coming down in the lift. It was Thursday of the first week; it couldn't be the Queen. We were only feet away from the "old lady" when she emerged, and she's aged well. It was Roger Federer.

I live in the best place in the U.S. during the summer — the Pacific Northwest, with its temperate climate and easy access to nature and culture. Rarely do we experience heatwaves, and humidity levels run lower than in most places. We may joke that “it rains…

“O-cree-VUS,” I said, clearly and naturally into the headset. I had recently purchased the device for use with the voice-to-text software I need to type (MS, right-hand weakness, loss of finger dexterity and motor skills). “Okra bus” slowly appeared on my computer screen. It was late March, and I was working on my first column for Multiple Sclerosis News Today. The Food and Drug Administration (FDA) had just approved Ocrevus (ocrelizumab) for use in the United States, making it the only drug to receive the agency's blessing for treating primary progressive multiple sclerosis. It was a big deal — so big that even my friends and family were aware of the announcement. Naturally, I wanted to write about it. I tried again. “Oh-CREV-us,” I repeated. Clearly, yet naturally. I use Dragon for Mac speech-recognition software to write \. “Clearly and naturally” is part of the software’s mantra. “O Christmas.” “Ohhhh-creeee-VUUUS,” I said. Very. Clearly. Very. Naturally. “Okra vest.” The weakness in my right foot that led to foot drop began in the early 2000s. The weakness in my right hand didn’t present itself until late 2015. At first, I tried using Apple’s Scribe feature, largely because it was already installed on the Mac I had purchased that year, and also because Mac and Apple products are easy to use and intuitive … most of the time. Scribe seemed clunky, and the lag time between saying a word and Microsoft Word recognizing it and “typing” it was significant. At one time, I had written 5,000-word feature stories, time-consuming projects that demanded long hours of composition, editing, typing, and writing. I’ve written for so long that writing and typing and my fingers were woven together, a symbiotic relationship that I couldn’t fathom ending. Yet, it became clear that this was going to be a new hurdle (foolishly, one I hadn’t anticipated) and would require a different way of thinking about writing, of what I “do” in life, and in that way, of who I was versus who I am. By spring of 2016, it was obvious that my typing days were coming to an end, and I began using Dragon for Mac. (Full transparency: The folks at Dragon provided a review copy for me to try for free.) But I didn’t want to read the instructions for using Dragon. And I didn’t want to practice. I just wanted it to work, and I just wanted to be the “me” I remembered. As long as I was only writing short emails and could live with sketchy grammar, it was awesome. Drunk from my regained capacity, I began writing and sending emails to everyone for everything. The sobering reality that came with writing anything of substance or craft — hands-free — was equally spectacular. Slowly, I came to understand that Dragon (and all such software and, frankly, all such assistance for better managing my MS and helping myself) was no better than the effort I put into making it work. The people at Dragon asked if I’d write a review of the product, which you’ll find here. The short story is that Dragon is a dictation “robot.” It can format, and cut and paste, and carry out so many of the functions that we take for granted, or at least, once did. With time, commitment, and effort, Dragon learns users’ voices, and within reason, can get the job done even for longer, more complex composition. It even offers a “custom word bank” in which users may add frequently used words, like Ocrevus or ocrelizumab. But I hadn’t made the effort. “Oh-KRA-liz-ooh-MAB” I said, switching it up and hoping Dragon would finally recognize the word. “Oak Grove Missoula lab.” My deadline was looming and I could hear the clock ticking. Clearly and naturally, I screamed “OCREVUS!” into the headset. “Oh crap this.” At that moment I realized how valuable the software was and is. No, it didn’t get the spelling correct, but it did help make that first column possible and it did help me hang on to something I still find very valuable. And, in its own way, Dragon seemed to understand not just the word but also the context. “Oh crap this indeed,” I thought, smiling. And then Dragon and I finished my column.

It has been a busy few weeks. Well, when I think about it, every week is busy. There is always something that must be done. Just when I think things will slow down, my schedule lengthens. Admittedly, I am not a technology expert, so I rely on the…

One of the earliest symptoms that appeared before my multiple sclerosis (MS) diagnosis was imbalance. I remember turning my head to look at something and feeling slightly off-balance. I didn’t think much of it at the time, but that wobbly sensation gradually increased through the years. Occasionally, I…

I’ve been considering writing about the fun, fun world of catheters. As this column is morphing into some sort of diary, let’s deal with this week’s medical procedural drama. Welcome to UTI (urinary tract infection) week. Anyone who uses a catheter is prone to a higher incidence of…

So, I recently signed up to join a new and much closer exercise class. The previous drive of nearly an hour each way had proved to be beyond my range. Actually doing exercise when I got there seemed bonkers! But I haven’t been there as of yet ― my…

Earlier this year, I visited a physical therapist I’d seen way back in my running days to devise a home workout routine that could help me address not only foot drop-related issues, but also a routine I’d actually do. One of the challenges I have with PT is doing…

Catheterization training in the hospital did not prepare me for how to manage on a daily basis. In my last column, I described how I ended up in the hospital unable to urinate at all. In this column, I will cover more details about what I learned along…

Catheterization was one of my biggest fears when first officially diagnosed with MS in 1994. As the years went by I thought I might be one of the few patients who do not experience malfunction in the urinary system. Then, in 2012, something changed. I went from having to…

A few weeks ago, I wrote about some of the invisible costs of living with MS. Writing that column really got my mind thinking about all the ways that my MS costs me money. In fact, I couldn’t stop thinking about it! In the days that followed, I…

Like so many people with MS, Mariska Breland remembers the disease’s onset as a combination of strange, seemingly disparate maladies that included tingling in her left thigh, numb feet, skin that felt “too thick” around her toes, foot drop, and double vision. One left her…

Many people with MS experience symptoms related to digestion. According to the Pittsburgh Institute for MS Care and Research, “Nearly two-thirds of MS patients have at least one GI symptom that persists for 6 months or more.” Some of the most common problems are dysphagia (trouble swallowing), heartburn, nausea,…

What makes housing accessible? I thought I knew all of the features that would make a dwelling accessible. Turns out I didn’t. The Department of Housing and Urban Development report on housing stock in America has a table that covers an extensive range of…