Daily living

In Cold Sassy Tree, the classic novel by Olive Ann Burns, Grandpa Blakeslee tells his grandson Will Tweedy that, “Livin’ is like pourin’ water out of a tumbler into a dang Coca-Cola bottle. If’n you skeered you cain’t do it.” If you don’t speak fluent hick, as I do,…

Several weeks ago I wrote about the benefits of time outdoors and my desire to learn to kayak properly, so  it can be an option when my legs won’t carry me into nature. I recently completed the final of three indoor kayak lessons. The course was actually called “Kayak Roll.”…

I love it when the sun is shining. I spend a lot of time outdoors in the summer, despite the impact of the heat on my multiple sclerosis. I love the warmth and the brightness. So, I lather up with sunscreen and I figure that, at least for me,…

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…

My column, earlier this week, about traveling with a scooter, generated a couple of questions. What do you ride? Where did you get it? How much did it cost? Here are a few answers for the group. Less than a week ago I finally trashed my Pride Sconic, which…

“Round, round, get around. I get around.” I was humming that classic 1960s Beach Boys tune this morning (yes, I’m that old) as I thought about a feature story that I saw on one of the TV networks recently. The story profiled Cory Lee. Cory has spinal muscular…

“I can come over and stab you, if Gramma can’t do it,” read the Facebook post from my oldest son.  “Aw … thanks, kiddo,” I replied. Some things seem more interesting when taken out of context!  Of course, most of you will realize that my son was offering to…

The British government announced on Oct. 31 that a new Personal Support Package will be available for people with health disabilities, such as multiple sclerosis (MS), ensuring they receive personalized health and employment support. A Green Paper – a government document for consultation – is available online to open…

The National Disability Institute manages the website www.ablenrc.org that has good information. I watched all the “webinars” and found them informative. A new one is going to be broadcast Nov. 15, 1:00-2:30 CST  (event number 660 742 928),  and likely will be archived with the rest of the webinars…

ABLE Accounts and Amendments In my previous column, I introduced the exciting new program for people with disabilities, called the ABLE Act (Achieving a Better Life Experience Act). The final bill, signed into law in 2014, deviated substantially from the original proposal and that needs to…

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…

Fall is here and things are a little more slick. Walking for most of us with multiple sclerosis involves weakened legs and lack of balance. We have daily challenges getting around in good weather, let alone bad. Add a little rain, a few gusts of wind, and some bone-chilling cold and…

Using a computer mouse can be difficult for people with the many diseases or injuries that affect muscular control, including those with multiple sclerosis (MS).  So a company called Perceptive Devices has designed a way around that problem, and recently released a new version of its Smyle Mouse, a device that tracks facial…

I work full time in public health, and some days are spent ‘out in the field’ visiting clients in their homes. It requires careful planning to ensure that I have adequate water, food, medications, and layers of clothing for homes that are too hot or too cold.  I research…

Disability from multiple sclerosis develops, on average, within 10 years of diagnosis. Financial catastrophe was often the consequence, until Congress passed the Achieving a Better Life Experience Act (ABLE Act) — signed into law on Dec. 19, 2014, by President Obama. This act allows you or anyone to…

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,…

Osteoporosis (fragile bones) is only a women’s problem, right? Wrong, especially if you have multiple sclerosis — as I’ve discovered. Osteoporosis causes bones to become weak and brittle.  A fall that probably wouldn’t harm a healthy person can easily break the bone of someone with osteoporosis.  When the…

It’s definitely autumn here in the Pacific Northwest. Misty, gray mornings give way to breezy sunshine in the afternoon … for a couple of hours anyway, until the evening rain arrives. This is the time of year that the weather forecasters compete to see who can come up with…

It was while catching up with friends  at a favorite Thai restaurant Saturday night when my fresh spring roll reminded me of something: I had signed up for a Beginning Kayak Roll course as the next of my series of outdoor activities with MS. “Why don’t you just take…

I hate to admit it, but I’m getting kind of old. That’s not to say that 68 is really old, but I’m probably older than a lot of you who are reading this. I’m also 36 years old in “MS years.” I was diagnosed the month that Ronald Reagan…

Continuing to live in your own home when you can no longer look after yourself is an ideal many people seek to aspire to – but it’s not easy. Outside help is often needed. Alex Camarillo is one perfect example of this. He is 35 years old, has severe…

My children will be the first to tell you that I struggle with new technology. In fact, I’ve just returned home from dropping off my youngest son at college and realize that I forgot to have him write instructions for the television. Netflix may come in handy now that…

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…

When my physiatrist diagnosed my MS “foot drop,” she wrote a prescription for vehicle hand controls. I was both elated and terrified. Could I drive long distances again? Arrive pain-free, able to do a short hike? Could I regain the freedom of knowing I would not have to…

Thinking has become my second job. Never have I had to put so much effort into gathering my thoughts or comprehending the world around me as I do with MS. To say MS has changed my life in so many ways is an understatement! Of all of my MS…

Many people voiced their concerns to me about anyone with MS moving to live in a sunny climate. That worry is understandable. With a disease that includes heat sensitivity, where even a hot shower can make you worse, how can any MS patient move to live in an area where…

Even before my 2010 Primary Progressive MS diagnosis, I was influenced by my inner voice. Way too many times I’ve given into my insecurities and visions of all the terrible scenarios that could occur. Everyone has that little voice. The one that will whisper, “you can’t do that,” or, “why bother?…

A new video series for multiple sclerosis patients in the U.S. looks to help them better understand the complex legal and planning issues they face. The series, put together by the National Academy of Elder Law Attorneys (NAELA) and Stetson University College of Law, in consultation with the National Multiple Sclerosis Society, is…

Editor’s Note: MS Patient Specialist and Columnist Judy Lynn writes from her unique and engaging perspective as an MS patient reflecting on the challenges that the disease presents and how to cope with them in her daily life. In her debut article for her new Column “You’ve Got Some Nerves,”…