Daily living

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…

My parents taught me at an early age not to judge others based on appearance. My mother would gently admonish me if I would stare or point at someone in a wheelchair or who had an obvious physical malady. While these basic manners…

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…

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…

  I was diagnosed at a time when no approved medications for MS existed and there was no internet to search for information about the disease. I was in my late 20s, dating the man I’d eventually marry and wondering how this new normal would affect my life. I’ve…

Earlier this month, I was fortunate to enjoy a beautiful cruise through the inside passage of Alaska. Having done my due diligence (see “Cruising Solutions“), I was prepared with an over-the-counter medication, as well as some extra baclofen. Both were recommended by my pharmacist to help curb…

My multiple sclerosis (MS) brings fatigue, pain, and instability into my life, but surprisingly, it also makes me more aware of my life and surroundings. For me, that means being more aware in the present moment and focusing on the good in my life right now. Living in…

After 10-odd ― indeed, increasingly odd ― years, I presumed I’d become something of a gnarled hand at MS. If you read about something on practically a daily basis, you begin to think you’ve got pretty comprehensive knowledge of a subject. Sure, in the past, events happened that I…

A silver lining is the hopeful side of a situation that might seem gloomy on the surface. A metaphor for optimism, this accurately describes who I am. This is not to say that I don’t experience the inevitable darkness that accompanies those trying days living with progressive multiple sclerosis, I…

I was watching my son’s baseball game in the early 1990s when suddenly, my left eye went blurry and blocked my vision. It was a startling incident that lasted about two hours, and then it was gone. That was my introduction into the unpredictable world of multiple sclerosis…

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.

My disability rights activism includes housing issues. Affordable housing gets a lot of attention (no solutions, but attention, at least). Accessible housing, not so much. Like the invisible symptoms of multiple sclerosis, the need for affordable ACCESSIBLE housing remains hidden. Accessibility needs to be part of the dialogue I…

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…

About a year ago, I first learned about something called an Ogo. It was just in the development phase then, but it was the neatest thing I’d ever seen for getting around when your legs can’t do the job. You don’t need to use your arms, either.

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…

I don’t normally go in for trends. For example, I don’t own a single pair of skinny jeans. I’ve never tried a Unicorn Frappuccino. I’m not on Instagram or Snapchat. I didn’t participate in the Ice Bucket Challenge. And I refuse to use the words “doggo,” “pupper,”…

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…

Last week, I shared details of Everyday Matters, a program by the National Multiple Sclerosis Society. This self-directed, multi-week program uses the principles of positive psychology. The readings, lessons, and exercises need not be completed in a particular order, but I am going to start my exploration of…

Though my first brush with MS came in 2000 or so, I wasn’t diagnosed until December 2013 with primary progressive MS. Shortly after the diagnosis, I began scouring the internet for information about the disease and how to live with it. Sound familiar? I found…

The Multiple Sclerosis Association of America (MSAA) has released three new resources for people with multiple sclerosis (MS), available for free as both printed and online versions on MSAA’s website. According to a press release, the three new resources are: A cover story in the latest edition of MSAA’s…

Many years ago, not long after my MS diagnosis, my cousin gave me a “gratitude journal.” At that time, I was all too aware of what I was not grateful for. The thought of giving thanks was daunting. But the journal suggested writing down just three things a…

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…

I just spent a week in Boston at an industry conference. I realized I’ve mastered the art of preparing for long-distance excursions since my last flare-up four years ago. Business trips used to be so intimidating to me. Now, I’m much better at packing,…

I have had the privilege of watching several children grow into adulthood, and witnessing their transformation has been priceless. I have experienced extreme joy, sorrow, pride, and disappointment; all of the many emotions associated with life itself. However, what I find truly amazing is the innocence and determination of…

The National Multiple Sclerosis Society and a dozen other advocacy groups have banded together to support the Air Carrier Access Amendments Act of 2017, a bill seeking to strengthen the rights of airline passengers and close service gaps often faced by patients with disabilities, including those with multiple sclerosis (MS).