News, info and tips for living with multiple sclerosis

But doctor, I can’t afford the cost of that MS drug

Picture of empty pockets due to health costs

Have you checked the cost, recently, of MS drugs or of drug insurance premiums?  Reuters, using data compiled by the health care research firm 3 Axis Advisors, has reported that price boosts were expected on more than 140 brands of drugs early this year – more than 500 if you include different doses and formulations. It’s probably not a coincidence that the monthly cost of my AARP Medicare Part D…Continue Reading

MS Awareness Month book special!

The Multiple Sclerosis Toolbox cover

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?

Yes/no sign for DMT age decision

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

Travel, stress, and my MS

Travel in airport with boarding pass

Travel with my multiple sclerosis can mean super-size stress. But some advance planning can smooth the ride. I’ve always taken pride in my ability to travel the world using my little scooter, but this trip – flying from Florida to Washington, DC and back over the Christmas holidays – worried me. My wife and I hadn’t flown in five or six years and, since our last flight, Laura had begun…Continue Reading

The MS Wire is shifting gears

Gear shift

As some of you may know, after more than seven years of writing the MS Wire column for MS News Today I am no longer writing for that website. As I admitted in my final column last Friday, “writing a couple of columns almost every week, under a deadline, has taken its toll on my energy, and sometimes on my mood. It’s time to back off a bit.” Much of…Continue Reading

A better bladder means better sleep

Bladder incontinence

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

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

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

A busted scooter leaves me in the lurch

My mobility scooter

My mobility scooter quit on me the other day. I can walk 100 feet or so using a pair of canes, but my wheels are usually my legs. So when I turned the key and discovered those “legs” were powerless, I was stuck. This breakdown couldn’t have happened at a worse time. My wife, Laura, had been prepping for a medical procedure, the one where the prep is worse than…Continue Reading