So many of us are affected by disabilities, and day-to-day we strive to live our lives the best we can. The struggles due to these disabilities can consume a lot of our precious and sparse energy. Anything that can be modified in the home, at businesses, or anywhere we choose…
accessibility
My knee was jerking the other day. It wasn’t my MS, it was my knee-jerk reaction to the passage in the U.S. House of Representatives of a bill called the ADA Education and Reform Act of 2017 (HR 620). Before the vote, people with disabilities demonstrated inside the…
It’s nice when a negative experience can be turned into one that’s positive. I think that’s the result for a wheelchair-using MS patient following a problem she had at the Mall of America a few days before the Super Bowl. For those not familiar with the Mall of America,…
A Wheelchair that Drives Itself
I never thought I’d find a subject for this MS column in the technology magazine Wired. But, what do you know? A recent article suggested that the same technology being used to create self-driving cars could (and should) be used to create self-driving wheelchairs. Artist and…
Though I don’t always use it, I take my cane with me every time we go shopping. I can still shuffle to the cart pickup and drop-off without it and the cart doubles as my walker. Canes can be clunky, aren’t easily stored, and I simply…
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…
Get Me (with My MS) to the Beach
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…
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…
“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…
African- and Hispanic-Americans are less likely than whites to receive care for neurological diseases such as multiple sclerosis in a doctor’s office or clinic, according to a study. Many of them end up in a hospital emergency room after failing to obtain treatment that could have helped them avoid an…
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…
People with multiple sclerosis (MS) and others with spinal cord injuries and disorders will speak at the United Spinal Association’s upcoming 6th Annual Roll on Capitol Hill, which takes place June 11-14 in Washington, D.C. Andrea Dalzell, Ms. Wheelchair New York 2015, will be among those advocating for greater access to complex rehabilitation technology.
Have you ever been on a New York City subway? I grew up in the Big Apple, and I used to love riding the subway as a kid. I’d travel all over the city without a problem. Not so today. Not so since MS changed my track.
You might think that the Fair Housing Act required multifamily buildings to have elevators, but no, it doesn’t. A multifamily dwelling of four units that does not have an elevator is not required to have one. However, the ground floor units must be fully…
Being disabled by MS does not have many advantages. One — free city street parking in California — is likely to end soon. In the rush to garner parking revenue, though, the lack of concurrent discussion about providing dedicated handicapped parking (DHP) is troubling. The widespread abuse…
Riding and other activities with horses can help adults and children with the balance, gait, and psychomotor disorders that are hallmarks of multiple sclerosis, according to review of 16 studies. The review, “Therapeutic Effects of Horseback Riding Interventions: A Systematic Review and Meta-analysis,” was published in the …
Lost in the delights of the library; 10 minutes over meter limit Yes, they chalk-marked the tires and I got a ticket. I was furious. Once again,…
My first encounter with “Why bother?” was in 2011. My whole family had met in Maui to celebrate my daughter Amber’s wedding. It also was my first travel since my 2010 primary progressive multiple sclerosis diagnosis, and my first trip with a wheelchair. I didn’t realize when you fly…
B-Temia announced the launch of its “b-Klinic Mobility” business unit, offering clinical services, information, training, and ongoing support to patients and healthcare professionals who use the company’s Keeogo walking assistive device. Keeogo is B-Temia’s first product in the class of dermoskeletons, designed to assist persons with mobility-related challenges that limit…
Getting in the Front Door
It’s happened to us all. You arrive at a business and discover there are steps at the entrance. A few years ago my wife and I arrived to check-in to a 4-star hotel near The Wheel in London, and discovered that there were a dozen steps at both of…
The U.S. Food and Drug Administration (FDA) approved for marketing Adapta Medical’s PerfIC Cath, an intermittent and easy-to-use urinary catheter that was designed for patients with limited dexterity by a doctor who is also a quadriplegic. Urinary tract symptoms can trouble people with multiple sclerosis (MS). In fact, according to the National MS Society,…
The National Multiple Sclerosis Society has launched an initiative, called Make MS Medications Accessible, calling for change in the pricing of multiple sclerosis (MS) medications in the U.S., which the group said need to be more affordable, and ways of acquiring them more simple and transparent. The initiative asks leaders of all…
The U.S. Department of Health and Human Services (HHS) recently announced policy changes designed to make information about clinical trials of investigational drugs, biologics and products more widely available to the public, issuing amended rules that specify the requirements for registering clinical trials and for submitting summary results to its ClinicalTrials.gov website. The…
You don’t see people with disabilities very often in television ads. And when you do, the person with the handicap is usually playing a secondary role or the ad uses the disabled person for an emotional appeal. It’s not real-life. It’s not us. So, a tip of my hat to…
Transcutaneous electrical nerve stimulation (TENS) might be an option to treat spasticity, one of the more common symptoms of multiple sclerosis (MS), according to a literature review conducted by researchers from Universidad de Castilla la Mancha, Toledo and Hospital Nacional de Parapléjicos de Toledo, in Spain.
Do you remember when you applied for a handicapped license plate? I put it off for quite a while after I was diagnosed. After all, I could walk several city blocks fairly easily. I could still play a little tennis. Why did I need to park in a…
The use of assistive devices is ineffective for multiple sclerosis (MS) patients, a study recently presented at the Consortium of Multiple Sclerosis Centers (CMSC) 2016 Annual Meeting concluded. But physical training using such devices can help improve mobility and the result is usually accompanied by a lower level of signaling…
ReWalk Robotics, Ltd., announced it is partnering with the Wyss Institute for Biologically Inspired Engineering at Harvard University to further develop and test lightweight exoskeleton systems for people with disabilities affecting their lower limbs, including those with multiple sclerosis (MS). “This is a very exciting day for the soft suit technology,” Conor Walsh, a…
The Multiple Sclerosis Association of America (MSAA) has updated its smartphone app My MS Manager with several new features. My MS Manager, a first-of-its kind mobile phone app supporting both Apple’s iPhone (iOS 7.0 or later) and Android mobile devices (also works with iPads, iPod touch, and Android…