MS Connection Blog

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Mindfully Tuning out the Tyranny of the Active

Blog Summary

Have you ever seen social media accounts of people who are super-busy, who seem to be moving, networking and taking pics of every glorious moment of every day? As I scroll through Instagram, Facebook and Twitter, I often wonder when our culture decided that being perpetually on-the-go and always clutching a long to-do list are quintessentially American values.

It doesn’t seem to matter what form this flurry of activity takes. It can be anything from a gym workout, a 20-mile bike ride on a lovely trail, a hiking or kayaking excursion amid vivid scenery, images taken from the stands at a children’s event or game, attending a Pinterest-perfect party, or visiting the new, artisanal, farm-to-table restaurant during its opening week. The pressure is on to keep yourself busy, busy, busy...

Can Someone with MS Exercise?

Blog Summary

“I can’t do that I have MS” “I would never manage it” “I’d love to do it but I just couldn’t” “I’m too tired to exercise”   This is what I used to say to myself for at least 5 years after my diagnosis...

The Wheelchair

Blog Summary

It first started with a limp while carrying my one-year-old daughter on a hike to Calf Creek Falls in southern Utah in 2000. After years of searching for an answer as to why my walking and fatigue were getting steadily worse, in 2015, I received a diagnosis of primary progressive multiple sclerosis (PPMS). Wow, finally I had an answer. Today, I am no longer able to walk on my own, and I utilize a wheelchair much of the time.   My progression is most likely very familiar to many with PPMS. It started with that limp, then went on to needing one cane, then two canes, then a walker, then a rollator, and finally, the wheelchair. Ah, the wheelchair. That’s what I most want to talk about. For years I resisted it even as my ability to enjoy the things I love to do and people I like to see faded into a past life. My wife would say, “Steve, use a wheelchair if you need to. It would make things so much easier.” But pride got in the way. Finally, I gave in. And what a difference it has made...

Dizziness

Blog Summary

Dizziness is the bane of my existence. It’s my most persistent and irritating MS symptom. It’s led to a long list of restricted activities: amusement park rides, drinking caffeine or alcohol, cartwheels, reading on a road trip, certain yoga positions. Obviously, none of these activities are essential. But even with strict adherence to my self-imposed “dizziness avoidance rules,” I still have those days when I can’t escape that woozy, cloudy feeling that I call “dizziness” (because nothing else describes it quite as well)...

The Importance of Preventive Care

Blog Summary

MS had really taken a toll on my new patient. Or so I thought… She came to see me one afternoon in my family medicine clinic. Her son pushed her into my exam room, and I moved my stool to make way for her wheelchair. One of her arms was rigid, useless. Her speech was slurred, and she reported terrible back pain. As an MS patient myself, I was disturbed to see her, knowing that my fate could be similar...

Five Ways MS Has Changed the Past Five Years

Blog Summary

There was no celebrating on the fifth anniversary of my diagnosis of relapsing remitting multiple sclerosis. Instead, I did some reflecting. After the reflecting was over, I made a list of the five ways—one for each year of the disease—MS changed the ways in which I move through and deal with the world...

Supermarkets and Other Chores

Blog Summary

In my opinion, the number one most annoying thing about life? Cleaning.   I used to love cleaning. I remember when I got my first apartment at 19, I’d get up early every Saturday morning to clean and scrub every inch! I’d feel ridiculously house-proud and like a proper “adult” for the first time in my life...

Depression and MS

Blog Summary

We’re always saddened when a favorite celebrity dies. But somehow the death by suicide of actor/comedian Robin Williams has felt like a sucker-punch to the gut. How could someone so seemingly full of life, someone who lit up so many other lives, have arrived at such a dark place that he’d take his own life?Depression.In the aftermath of Williams’ death we’ve been reminded that he long struggled with depression. We’ve been bombarded with messages urging us to be more aware of mental illness in general and depression in particular, and social media have been replete with videos of people telling us how we might help those in our lives who suffer from this insidious disease...

Finding Solace Between Two Covers

Blog Summary

Sometimes I just need to relate.   I need to see my experiences, my struggles confirmed instead of negated and misunderstood. I need to remind myself that I am not alone in my fatigue, in bouts of cognitive fuzziness, in my hair-pulling frustration...

Mish Mosh Life

Blog Summary

I was diagnosed with relapsing-remitting MS back in 2014 when the left side of my body lost all mobility, and I was experiencing consistent diplopia in both eyes. After a solid week of Solu Medrol steroids administered via IV, months of pushing forward, and the discovery of nutrition and exercise, I got most of my mobility back. Fast foward 4½ years later, I have been blessed to be relapse-free ever since… until now. For the last month or so, I have been experiencing new symptoms; more consistent chronic pain, numbness in my hands I didn’t notice until I realized I was using boiling water to wash the dishes, and something a bit scarier. I haven’t been able to formulate complete sentences without tripping over my words for weeks. As someone who works in corporate professionally and just barely gets by thanks to my words, this has been earth shattering...

Summer is Coming

Blog Summary

The sounds of birds singing, children playing and crickets chirping. The smell of barbeque, freshly cut grass or the beach. Sweaters have been replaced by t-shirts, pants with shorts, and shoes turn into flip-flops. It can only mean one thing...