The MS Wire

News, info and tips for living with multiple sclerosis

Category: Living with MS

Susie uses music to muse over her MS

music notes

“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

Equality symbol

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

Searching for a great MS neurologist

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

Lightening, stress and my ms

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?

Luray caverns

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

Is your MS able to deal with disaster?

Disaster symbols

I’m sure you’ve seen the pictures of the wildfires that charred Maui, Hawaii. As I write this, more than ten days after the blaze, at least 111 people are known to have been killed. Some neighborhoods are gone. People literally ran from the flames. This past weekend thousands of people were fleeing a wildfire in Yellowstone, the capitol of Canada’s Northwest Territories. But my multiple sclerosis makes running impossible, and…Continue Reading

MS pain can be ubiquitous

Aaargh pain graphic

Multiple sclerosis is a pain in my butt — and other places, too. It hasn’t always been that way. For many years post-diagnosis, I didn’t notice much pain. But of the 43 years I’ve lived with MS, it’s hurt for the past 15. Usually, it’s just a dull ache in my lower back. I can also have a similar pain in my hips and butt. Once in a while, I…Continue Reading

A Big Birthday and Another MS Anniversary

birthday cake

“Will you still need me, will you still feed me, when I’m 64?” Could Paul McCartney have imagined what life would be like at 64 when he wrote that iconic lyric as a teenager, or when the Beatles recorded it in their early 20s? I never could’ve imagined it when I was a teen, or even when I was 40. Later this week I’ll be 75, more than a decade…Continue Reading

Bottoms up: Drinking for my MS

Water glass for drinkinig

I’m drinking again, more than I have in years. It’s not the hard stuff, though; not even beer or wine. It’s just plain water. That may sound crazy for someone like me who has bladder problems due to multiple sclerosis. For many of us with MS, we think that water is something to avoid — mostly so we can reduce those gotta-go, gotta-go moments that have us sprinting for a…Continue Reading

Another MS checkup is in the chart

medical record

“What can Dr. Crayton help you with today?” I was starting my annual multiple sclerosis checkup with my neurologist, and before I met with her, I got this question from her MS nurse. I was stumped. I’d never been asked that before. I think most people with MS would have a list of things they could rattle off — help me with my bladder problems, suggest a treatment that will…Continue Reading