Living with MS Archives - Page 2 of 23

MS Awareness Month book special!

Posted on March 4, 2024March 2, 2024

March is MS Awareness Month…what better time for me to drop the price of the paperback version of my book, “The Multiple Sclerosis Toolbox,” to just the cost of printing and shipping. “The Multiple Sclerosis Toolbox” combines my experiences living with MS for four decades with detailed information about treatments, tests, diagnostic criteria, mobility aids, travel, talking with your neurologist, and more. It’s designed for folks who are newly diagnosed…Continue Reading

Is it time to end your MS DMT?

Posted on February 26, 2024February 25, 2024

Is there a time when multiple sclerosis (MS) is finished attacking the nervous system – when it just “burns out” and there’s no longer any need to continue using a disease-modifying therapy (DMT)? A 2017 review by researchers at the University of British Columbia notes that disease activity declines as people with MS grow older. It suggests that those who are 55 years or older and have had no relapses,…Continue Reading

Five things I’m thankful for despite my MS

Posted on November 27, 2023November 24, 2023

It wasn’t a good morning. I was dragging my cement-pillar legs around the kitchen and grew frustrated as I lurched from the refrigerator to the counter to feed the cat and the dog. I’d propped my two canes against the counter, but they’d slid to the floor — not once, but twice. When I bent down to put a bowl of water on the floor, it spilled. Then I wanted…Continue Reading

A better bladder means better sleep

Posted on November 6, 2023November 5, 2023

I slept through the night last night. Recently, I’ve managed to do that on most nights. No 4 a.m. bathroom trips for me! That’s a big deal. There was a time when I’d get up two or even three times during the night for a bladder run. Sleeping seven or eight hours straight is huge. I’ve been troubled by bladder frequency and urgency for many years during the four decades…Continue Reading

My MS does better in the Sunshine State

Posted on October 31, 2023October 30, 2023

I’m back in my happy place. My wife, Laura, and I, along with our Yorkie-poo and our Maine Coon cat, have made it back to our Florida home after 16 hours and about 1,000 miles of driving over two days. There were no traffic jams, we had a comfortable motel bed, my multiple sclerosis bladder problems were pretty much under control, and Laura and I didn’t kill each other. So…Continue Reading

Susie uses music to muse over her MS

Posted on October 23, 2023October 22, 2023

“I’m so tiredThe hammer’s coming down againI’m hardwiredAll the signals cross and double backBroken insideThere’s no fixing anythingHow do i explainI’m fighting every day to do the simple things?” The lyrics to “Hammer,” written by Susie Ulrey of the band Pohgoh, probably ring true for most everyone with multiple sclerosis. Ulrey’s story is similar to many of ours. Double-vision three days before her wedding in 2000. A visit to a…Continue Reading

Health equality should include disability

Posted on October 9, 2023October 19, 2023

You’d think that people with multiple sclerosis or another disability would have easy access to healthcare services. That’s not always so. A small study in the journal Health Affairs that I wrote about last year said many physicians “expressed explicit bias toward people with disabilities and described strategies for discharging them from their practices.” Now, at the urging of people with disabilities and others, the U.S. National Institutes of Health has…Continue Reading

A good MS neurologist can be hard to find

Posted on September 25, 2023September 24, 2023

A question that’s been bothering me lately is this: It seems that more than a few neurologists have a less than optimal understanding of multiple sclerosis. Why is that? In my four decades of living with MS, and during the several years I’ve written about my illness, I’ve regularly heard complaints from people with MS that the neurologist they’re seeing just doesn’t seem to have the right stuff. A Reddit…Continue Reading

Lightening, stress and my MS

Posted on September 18, 2023September 18, 2023

Lightning struck at 3 a.m. the other night. The alarm system in my apartment blared — beeep, beeep, beeep — for hours. The dog was barking, the cat was zooming, and I wasn’t sleeping. My stress meter was off the scale. We know that stress can trigger MS symptoms, yet it rarely, if ever, has directly triggered mine. I spent over 40 years in the news media covering breaking news.…Continue Reading

Caverns, grandkids, my scooter and me. Does trouble lurk?

Posted on August 28, 2023August 27, 2023

My wife, Laura, thought it would be fun to take our grandkids, ages 7 and 9, to spend a few hours exploring a giant cave. I wasn’t so sure. Ten minutes into the excursion, I was wondering which one of the adults would be hauled out in an ambulance. Luray Caverns in Virginia bills itself as the largest caverns in the eastern United States. The pictures of stalactites and stalagmites…Continue Reading

"People newly diagnosed with MS will truly benefit from this book, while those of us who’ve lived with MS for a while will wish we’d had it ourselves!…Neurologists should consider keeping a copy of this book in their waiting room because their patients are going to need it." - Tamara K. Sellman, reviewing for Multiple Sclerosis.net.

The Multiple Sclerosis Toolbox is designed for MS "newbies" but it's great info for everyone. I combine more than 40 years of living with MS with some easy to understand info about diagnosis, treatments, visiting the neuro, relationships, mobility aids, travel and more…a lot of what you get in this blog. A paperback and an e-book are available on Amazon.