The MS Wire

News, info and tips for living with multiple sclerosis

Category: Living with MS

Things I Wish I’d Known Before My MS

Things I wish I'd known about my MS

A recent article in The New York Times hit the nail on the head when it comes to describing some things I wish I’d known about living with MS before I started living with MS. But the article isn’t about MS. The Times‘ Tessa Miller writes about Crohn’s disease, a type of inflammatory bowel disorder. Like MS, Crohn’s is an autoimmune disease. Instead of attacking the central nervous system, however, it…Continue Reading

I’d Rather Live With My MS Than Battle It

MS battle

A former colleague recently asked me, “How are you doing in your battle with MS?” It was a legitimate question, not one of those throwaway lines of mock concern that we often hear. We were discussing the death of a former colleague who had been diagnosed with MS in 1996. She was just 59 years old when she left us earlier this month.” Annie’s death and the “how are you…Continue Reading

Debating Whether to Stop Your MS Medication

Thinking about changing your M S medication

I see a lot of reasons why people stop, or refuse to start, an MS medication. “Thinking of stopping the…meds. Sick of the shots and how they hurt to take them” “I stopped all of them….all multiple times. It takes too long for an appointment and I tapered off “ “Half the s**t will kill you” “My body and my choice” “The side effects are worse than the disease” Forty…Continue Reading

Mindfulness: Attacking Your MS With Your Mind

Mindfulness

Can you use your mind to attack your MS, just as you use things such as medications and physical therapy? Some people who believe in the benefits of mindfulness think you can, at least to some extent. Mindfulness is defined as “the basic human ability to be fully present, aware of where we are and what we’re doing, and not overly reactive or overwhelmed by what’s going on around us,”…Continue Reading

Accessible Living With MS – A New Idea

Wheel Pad accessible room

When my wife and I were remodeling our two-story home many years ago, we made a few accessibility changes with my MS in mind. For example, we enlarged a first-floor half-bath to include a roll-in, accessible shower. We also installed a higher toilet and made sure there was space to fit a wheelchair next to it. If it became necessary, I could turn our first-floor den into my bedroom. It…Continue Reading

Doctors Need to Walk the Walk

doctor

Patients want to be more involved in their healthcare, but it’s not an easy process. I’ve written before about the hurdles we have to overcome to get some healthcare providers to communicate with us, to listen to what we have to say about our medical problems, and even to return our phone calls. The problems extend from the top down to the receptionist and other non-medical office staff. A group…Continue Reading

Worrying About MS Treatment Side-effects?

MS treatment

Over the past few of weeks, warnings have been issued about side effects of two MS treatments. First, the U.S. Food and Drug Administration warned about a “slight” risk of seriously worsening MS symptoms if someone who is using the disease-modifying therapy Gilenya (fingolimod) stops using it. The FDA’s alert said the worsening symptoms could “result in permanent disability,” but the alert failed to provide details about how rare these…Continue Reading

You’ve Gotta Go but There’s No Bathroom in Sight

Public loo

We’ve all been there. That “uh-oh” feeling hits and you know you’ll be in trouble if you can’t find a public bathroom, fast. You hope the clerk in the store with the “Bathrooms for Customers Only” sign will make an exception if you tell her it’s about to run down your leg. There’s got to be a better way than that. And maybe there is. (Screenshot from the “Just Can’t…Continue Reading