Daily living

Photo courtesy of Jennifer Conway Day 29 of 31 This is Jennifer Conway’s (@jenzconway) story: I was 24 when I was diagnosed with relapsing-remitting MS in 1998. Over the years, I’ve learned so much about how to manage daily life with MS and all that comes with…

Photo courtesy of Roy Padilla Day 28 of 31 This is Roy Padilla’s (@royale_padilla) story: My journey with MS began around fall 2008 (allegedly). One morning, I woke up with a small headache, that day by day got worse. It became so bad I couldn’t keep my balance.

Photo courtesy of Julie Tovar Day 27 of 31 This is Julie Tovar’s (@theadventuresofsamandjulie) story: My journey started in December 2019, as I was planning my February 2020 wedding. I had developed a limp and was experiencing unusual symptoms along with lots of pain. I was…

The dull throbbing always hits a crescendo “in the wee small hours,” as Mr. Sinatra — or rather his songwriters — so aptly put it. I’m referring to a wound that’s been with me for over a year now. True, it disappeared for a teeny while, when my heel…

Photo courtesy of Marie Pontini Day 25 of 31 This is Marie Pontini’s (@mariepontini) story: The page on the previous chapter of my life had turned. It was pointless to wonder why, hang on to my past expectations of the future, or worry. My accomplishments, education, and knowledge were…

My week is never exactly easy, but it’s much harder for my family. Not only do they have to deal physically with my ever-enlarging lump of flesh, there’s also my verbal diarrhea to contend with. Then last Tuesday, it wasn’t just the verbal kind. Turns out my bowels began to…

Photo courtesy of Tiffany Wilcher Day 18 of 31 This is Tiffany Wilcher’s (@tmwilcher) story: My name is Dr. Tiffany Wilcher, and I was diagnosed with multiple sclerosis at the age of 22 while serving my country in the U.S. Army as a combat medic. I had no…

Photo courtesy of Tyler Campbell Day 11 of 31 This is Tyler Campbell’s (@tcspeaks32 ) story: At 22, I was suffering from paralysis and even erectile dysfunction. I felt so lost and yearned to be found. I needed a friend, someone to lean on who wouldn’t judge…

There I was, swinging away in my hoist at 9 p.m., though my swinging London of the 2020s wasn’t only 60 years later, it was also a lot, lot grimmer. My carer and maybe still wife, Jane, stood below in a controlled fury. If nothing else, she might…

In truth, my long, bad Friday started on Thursday afternoon at 5 p.m., although it seems wrong in the middle of a black, midwinter night to still call it afternoon. Still, if you live in Alaska, summer nights never even start! (OK, I’ll stop musing about the vagaries of Earth’s…

Reservations at a base lodge have been made, and a starting date is circled on her calendar. MS hiker April Hester is ready to start up the Appalachian Trail in the eastern U.S. It’s always an uphill hike for April, even when the trail is flat. She was diagnosed with…

I don’t know why, but for some reason, two people in my family decided to get me puzzles for Christmas this year. Granted, one is a rad picture of 30 or so classic book covers, and the other is covered in cats. But still, it’s weird. When I returned home…

As I glance over at the lonesome wheelchair skulking in the shadows of my living room, I recall its arrival like it was yesterday, though it’s been more than four years. My husband, and then carer, had paraded it through the house as if it were a savior, there to…

I thought I finally had this bladder thing licked. After years of urinary urgency and frequency, I’d been doing much better. I was sleeping at least seven hours a night without having to go to the bathroom, and bathroom trips were less frequent in the daytime, too. When traveling…

I don’t know about you, but last week passed in a blur. I typically enjoy Thanksgiving, but this year, things were a little wonky. My husband’s grandfather passed away a month or so ago, so we weren’t about to ask his grandmother to prepare anything. My mother-in-law and I decided…

So, where was I last week? I was in the midst of writing this column when I was felled overnight by my long-term nemesis: a urinary tract infection (UTI). As usual, I had no idea I had one — but hey, I was ill. I’m sure I’ve banged on…

My wife, Jane, woke me up at 9 a.m., announcing, “Welcome to Groundhog Day!” Every day starts the same. Yes, I know the day always started at 6 a.m. in the film, but even 9 a.m. is a terrific shock to my system. Never in my life have I…

I was tryin’ to find lots of things to do while being trapped at my desk because of a wheelchair mishap. Apologies for my adaption of Bing Crosby’s rendition of that happy-go-lucky song “Busy Doing Nothing.” I was trapped because at 8 p.m. last Friday night, the wire that…

Bladder and bowel problems, which affect more than half of multiple sclerosis (MS) patients, should be assessed and monitored regularly to better adapt treatment plans and ultimately improve patients’ quality of life. That is among recommendations of Jane Young and Joan Bradley, two nurses with experience in MS care and…

I wish I could walk a mile in my shoes, but even with a new pair, that’s not going to happen. My MS limits me to about 100 steps while using two canes and a functional electrical stimulation device strapped under my left knee. Because walking is so difficult,…

I’ve had pee problems for as long as I’ve had multiple sclerosis. Many folks with MS have issues, including urinary urgency, frequency, or both, bladders that don’t empty completely, or streams that don’t start when you need to go. There are medications to treat these problems. The best known…

It’s all happening at once. Yesterday, a box turned up with my new lymphedema wraps, which use compression to help reverse my lymphedema symptoms. I’ve been waiting for the wraps for nearly a month. It turns out I’m such an unusual size that they had to be imported from…

This year, I’ve been acutely aware that my body isn’t perfect. Sometimes it doesn’t move well. Sometimes it cuts off sensation in my limbs without notice. Sometimes it gets wiped out from fatigue. Sometimes it’s like MS shakes up my head so hard, like a can of soda, that I…

Any British comedy aficionados among you will know “He’s fallen in the water” is the most famous of all the innumerable catchphrases of “The Goon Show.” That show was the root of Monty Python and every bit of the new wave of comedy that swept through our country.

“Do you need help?” The question came from a 30-something woman after I’d finished loading some cartons into the back of my SUV. I automatically replied, “No thanks, all done.” But lifting and loading isn’t an easy job for me. My upper body strength is good, but my legs are…

I sit amid the flood of carpet stain remover. My left leg is elongated as my right leg is at a jackknife. The cool of the fluid penetrates my sweats. Shock dissipates into pain. I try to move, but pain sears down toward my tailbone. I sit in the dark…

I have a weird secret. I’m sure it’s not the norm for someone with a chronic illness to enjoy this as much as I do, but it always occupies my free time: I love medical dramas. They leave me enthralled with their technical and medical jargon, and their portrayal of…

My grandson, John, turned 5 in May, and my granddaughter, Hayden, turned 7 in June. I love being their Poppy, but I wish their Poppy didn’t have MS. I was diagnosed with MS in 1980, just over a year after our son, Geoff, was born. He and our grandkids have…

“Sorry, the brakes are terrible!” my husband complained, grabbing the wheelchair’s handles as I slowly started rolling down the hill. He jammed his foot in front of the wheel in a desperate attempt to get the chair to stay in place. We recently got away for the weekend to Blackpool…

If you have multiple sclerosis, no matter how long you’ve lived with it, you likely know it can be unpredictable. It can hit in weird ways you’re not expecting, even after years of learning how to deal with it. For instance, last Saturday, my family of four and some friends…