May 4, 2023 Columns by Benjamin Hofmeister Fatigue from MS is hard to both explain and understand Everyone’s multiple sclerosis (MS) is unique to them. The different disease types, lesion loads, and lesion locations are a few reasons why our symptoms are so variable. We with MS all live in the same neighborhood, just in different houses. If there were such a thing as…
April 27, 2023 Columns by Benjamin Hofmeister Our treatments for multiple sclerosis aren’t cures, but vital time-buyers Note: This column describes the authorās own experiences with Ocrevus (ocrelizumab). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Tomorrow morning, I’ll have my 13th infusion of Ocrevus (ocrelizumab). I’ve been approved for the fast infusion rate, so…
April 20, 2023 Columns by Benjamin Hofmeister Multiple sclerosis requires a different kind of can-do motivation I’m pretty good at doing what I’m told. You probably think that’s because I was in the Army for 22 years. You might even think it’s because of all the medical authority figures that have come with nine years of multiple sclerosis (MS). Of course, they both factor in,…
April 13, 2023 Columns by Benjamin Hofmeister Multiple sclerosis might be the ‘uncanny valley’ of diseases I recall a conversation I had with an acquaintance soon after my diagnosis. I hadnāt progressed to a wheelchair yet, but my limp was noticeable, and he’d heard talk from mutual friends. “What is it that you have?” he asked. “Multiple sclerosis.” A moment of wide-eyed silence…
April 6, 2023 Columns by Benjamin Hofmeister Being seen is an incredible thing when MS makes you feel invisible The kids had their spring break last week, so we loaded up and drove to Universal Studios in Orlando, Florida. I promise this column won’t be a review of the theme park and its accessibility (which was great, by the way). It won’t offer tips about traveling with…
March 30, 2023 Columns by Benjamin Hofmeister There’s no point in playing the blame game after the disease is diagnosed In a previous column, I wrote about the journey to my diagnosis of multiple sclerosis (MS). In it, I mentioned that the neurologist had praised me for “taking this well.” I suppose I did ā at first. When I eliminated the other possibilities, I was left with an…
March 23, 2023 Columns by Benjamin Hofmeister With multiple sclerosis, itās hard to stop saying ‘I’m sorry,’ but you should Even if I resolved to improve my cardiovascular health by taking the stairs more often, I canāt. Mobility problems brought on by my primary progressive multiple sclerosisĀ force me to use a wheelchair. Using a wheelchair, in turn, means that stairs and I are natural enemies (as are curbs and…
March 16, 2023 Columns by Benjamin Hofmeister When multiple sclerosis invades even my dreams I may not be able to turn in circles like a dog anymore, but I still have a few bedtime routines. Before I had an intrathecal baclofen pump, multiple sclerosis-induced spasticity would wake me up multiple times during the night. Whenever that happened, it was next to…
March 9, 2023 Columns by Benjamin Hofmeister An MS diagnosis can be confusing when it doesn’t fit your lifestyle A little over three years passed between my multiple sclerosis (MS) diagnosis and my medical retirement from the U.S. Army. Even before the diagnosis, I knew something was wrong and had taken a desk job while searching for the reason. Since I was behind a desk in a…
March 2, 2023 Columns by Benjamin Hofmeister The responsibility for raising MS awareness goes both ways Every once in a while, I wake up prepared to swing my legs over the side of the bed and get moving. That sleep-induced forgetfulness evaporates as soon as the reality of multiple sclerosis (MS) reminds me that I canāt swing anything. I suppose I should be grateful that…
February 23, 2023 Columns by Benjamin Hofmeister Learning to love ā and accept ā that person in the photograph We had family portraits made a few days ago. With a family of five, this never goes perfectly, so there was a little pre-photo briefing beforehand. There were some veiled threats, a promise of dinner after as a reward for good behavior, and more than a few hissed admonishments to…
February 16, 2023 Columns by Benjamin Hofmeister Could decluttering your living space improve life with MS? I am not by nature a very neat person. I want to be. I like order, but I lack the discipline to maintain it. People tend to think that time in the military makes you neat and orderly for the rest of your life, but in my case, theyād be…
February 9, 2023 Columns by Benjamin Hofmeister How multiple sclerosis leads to what I call ‘microinjuries’ “scabulous adj. proud of a scar on your body, which is an autograph signed to you by a world grateful for your continued willingness to play with her, even when you donāt feel like it.” ā John Koenig, “The Dictionary of Obscure Sorrows“ I’ve managed to amass quite the…
February 2, 2023 Columns by Benjamin Hofmeister Eating Comfort Food Can Be Uncomfortable With MS Summer is one of the cruelest times of year for people with multiple sclerosis (MS). Thanks to Uhthoffās syndrome, it’s hard to enjoy all the fun that comes with warm temperatures. I donāt seem to sweat anymore (not that it helps much in our high humidity), so I…
January 26, 2023 Columns by Benjamin Hofmeister MS Makes Me Feel Like a Child Again, and Not in a Good Way The other day, my middle child opened the door while I was in the bathroom. If you have children, a surprise visit in what should be a sanctuary isn’t unusual, but in this case, what he said was. He observed me aboard my toilet and shower chair, which progressive…
January 19, 2023 Columns by Benjamin Hofmeister Multiple Sclerosis Memory Issues Force Me to Use New Methods Before multiple sclerosis (MS), I was pretty proud of my memory. For the most part, I still am, but like many others with this disease, I now have trouble recalling information. For me, it’s one of the most irritating, (sometimes even infuriating), cognitive issues associated with MS. I…
January 5, 2023 Columns by Benjamin Hofmeister How I Respond to Typical Questions About MS From Children, Adults As Iāve probably mentioned before, my wife and I have three boys in grade school. This means that between school events, sports, and play dates, Iām around a lot of kids. Considering I use a wheelchair, my multiple sclerosis (MS) isnāt exactly invisible, so I’m often asked…
December 29, 2022 Columns by Benjamin Hofmeister This New Year, I Resolve to Let Myself Hope The new year is just a few days away, so if you haven’t already, you might want to start thinking about resolutions, if you’re so inclined. Although I personally don’t bother these days, about half of American adults do, although that number is declining. One study suggests that…
December 22, 2022 Columns by Benjamin Hofmeister ”Twas the Night Before Christmas’: A Multiple Sclerosis Parody The holiday season is one of my favorite times of year. Multiple sclerosis (MS), of course, has a way of sucking the joy out of anything, but it can’t have my family’s Christmas. I might miss sleeping in, but our three boys have really brought the magic…
December 8, 2022 Columns by Benjamin Hofmeister Being Able to Laugh at Yourself Is Vital When Living With MS I had a glass of wine thrown in my face on the evening of my wedding anniversary. I was taken completely by surprise ā well, maybe not completely. After all, the person who threw it has a reputation for that sort of thing. I was pretty irritated, though, because a…
November 17, 2022 Columns by Benjamin Hofmeister Striking a Balance Between Self-pity and Giving Yourself Grace They say that if you happen upon other people talking about you, you shouldnāt listen in. I have no idea who ātheyā are. Iāve searched for a quote to give someone the proper credit, but have had no luck. The most likely scenario that comes to mind is that I…
November 3, 2022 Columns by Benjamin Hofmeister Relief From Multiple Sclerosis Sleep Disorders Is a Dream Multiple sclerosis (MS) and a good nightās sleep seem to be mutually exclusive. I seriously doubt that anyone with MS will reply in the comments that the disease has blessed them with the best sleep of their lives. Yet I used the word “seem” because when writing about any…
October 20, 2022 Columns by Benjamin Hofmeister Why Do We Turn Into MS Monsters Just Before an Ocrevus Infusion? Something is happening to me. All four limbs have become heavier than usual over the past two weeks. My arms and fingers are stiffer and less responsive, and Iāve somehow managed to effect a shuffling gait in my wheelchair. My eyes tire quickly, to the point it seems like Iām…
October 6, 2022 Columns by Benjamin Hofmeister Don’t Let the Past and Future Be Obstacles While Living With MS While helping me get dressed this morning, my wife handed me a T-shirt from a dresser drawer across the room. It happened to be a shirt commemorating an event from my pre-multiple sclerosis (MS) past. Itās what you might call a ābeen there, done that, got the T-shirtā kind…
September 22, 2022 Columns by Benjamin Hofmeister Uncomfortable Liminal Spaces: When We’re Caught Between Here and There Every time I find myself in a multistory building, I end up on an elevator. Itās not as though Iām too lazy to take the stairs ā well, OK, I am lazy ā but in this case, itās because my wheelchair wonāt climb one, much less a flight of them.
September 8, 2022 Columns by Benjamin Hofmeister My Stubbornness Has Helped and Hindered Me in Life With MS Thereās a slight chance that I might be stubborn. I donāt really see it, but my wife, parents, siblings, relatives, friends, and former teammates all seem to think so. I personally think that theyāre mistaking my drive and strong willpower for stubbornness, but I suppose I respect their opinions enough…
August 18, 2022 Columns by Benjamin Hofmeister My MS Makes Getting Sick With a Viral Infection 10 Times Worse School started last week for our three kids. They got to see friends from the last school year, meet their new teachers, and sit at a new desk in their new classrooms. Per tradition, there was no homework assigned the first week, but they still brought home plenty of papers…
August 4, 2022 Columns by Benjamin Hofmeister How My MS Diagnosis Journey Became My Origin Story If I were a superhero (or a supervillain, for that matter), Iād have an origin story. As it stands, Iām not even a minor hero in real life, and only a mediocre one when appearing in my own stories. Iām just a guy with multiple sclerosis, and all I…
July 21, 2022 Columns by Benjamin Hofmeister A Friend Under the Skin: My Intrathecal Baclofen Pump In my last column, I mentioned that I had an intrathecal baclofen pump. Iād make a bad pun, but I donāt have it in me. Spasticity, spasms, and hyperreflexivity were some of my first symptoms, which steadily got worse as my multiple sclerosis (MS) progressed.
July 7, 2022 Columns by Benjamin Hofmeister The MS Paradox Results in Many Conflicting Feelings āThanks, I hate it.ā Odd way to begin a column, I know. I suppose Iād better explain myself. That phrase regularly appears in memes and other pop culture media as an expression of dislike for an image or tweet. No one seems to know where or from whom it…