Living with MS

So, where off Earth have I been? Nothing as adventurous as a space flight, I’m afraid, but a more prosaic litany of mishaps. First, I did crash, but that was from a vicious steroid withdrawal. My body went limp. Later, it would become even limper. A small wound on…

Photo courtesy of @JackieHicksFondMemories Day 26 of 31 This is Stacy Barton’s story: I’m Stacy Barton, and this is my story: In 2005, I was married with two children, including an autistic daughter, and working on Capitol Hill.  I had grown accustomed to walking around…

Last updated April 25, 2023 Expectations equal resentment. It’s simple logic, yet profoundly true. Each time I set an expectation for myself or someone else, I set myself up for a potential letdown. Resentment happens as a byproduct of disappointment, despite the best intentions. As my multiple sclerosis (MS)…

Photo courtesy of Colin Hirst Day 25 of 31 This is Colin Hirst’s story: Hello, I’m Colin and I have relapsing-remitting MS. Simply put, MS is an auto-immune disease that makes your body’s own cells break down the myelin around your nerves because it believes they are…

Photo courtesy of Matthew Embry Day 24 of 31 This is Matthew Embry’s story: Hi! My name is Mathew Embry, and I was diagnosed with multiple sclerosis in 1995. More than 25 years later, I am living symptom-free and making the best of…

“Is this the real life? Is this just fantasy?” The other night I watched the movie “Bohemian Rhapsody,” and seeing the portrayal of the late Queen frontman Freddie Mercury as he faced an HIV/AIDS diagnosis brought my own MS diagnosis…

Photo courtesy of Dawn Morgan Day 23 of 31 This is Dawn Morgan’s story: Hi! I’m Dawn Morgan. I have been living with relapsing-remitting MS since 2000, when I was 25. It was a complete shock. At the time, I was just beginning my professional career as…

Pilates, done regularly, can significantly improve balance and posture in men with multiple sclerosis (MS), helping them to avoid falls and the injuries they can bring, a small randomized trial in Iran reports. The study, “Effect of Twelve weeks Pilates training on functional balance of male patients…

Photo courtesy of Caroline Gellatly Day 22 of 31 This is Marissa Green’s story: I am Marissa, a fundraiser, drama therapist, and mental health practitioner who loves the outdoors, cooking, music, and any excuse for a party. My original diagnosis, Balo’s concentric sclerosis, happened in…

The National Multiple Sclerosis Society (NMSS) is helping Pack Health, a patient engagement platform, to optimize and expand its digital health coaching program to assist people living with multiple sclerosis (MS). Building on what it has learned through work with the NMSS, Pack Health aims to bring its patient-centered and…

Most patients with relapsing and progressive forms of multiple sclerosis (MS) are encouraged to get vaccinated against COVID-19 — and any vaccine of three authorized for use in the U.S. is safe to receive — according to recent guidance from the National MS Society. Despite mounting evidence that…

Photo courtesy of Rebecca Anton Day 21 of 31 This is Rosani Christy’s story: My name is Rosani Christy, and I have been living with MS for over 20 years.  I have always been a class clown. Making those around me laugh gave me a high, and…

Photos courtesy of Esme Robinson Day 20 of 31 This is Bron Webster’s story: Multiple sclerosis is unpredictable and volatile.  I got my diagnosis in 1996. I adapted. I gave up my 20-year financial services career in 2008 to focus on my daughter. I retrained…

For a week, I’ve spent my afternoons painting our enclosed garden. When we built it last spring, the wood was new and lovely, but rain and sun have taken a toll on everything, leaving it dingy and dull. And now that we have a custom-built white shed (courtesy of my…

Lately, I’ve seen a lot of incorrect information on social media about how multiple sclerosis affects our immune system. Some of it seems to be prompted by concerns that MS makes someone more susceptible to COVID-19, or confusion about whether people with MS can safely receive a COVID-19 vaccine.

Photo courtesy of Conor Devine Day 19 of 31 This is Conor Devine’s story: I have been living with MS now for more than 15 years, which I would summarize as follows: 2006–2011. The first five years were horrendous. I gave up, felt awful most…

Concerns about COVID-19 caused people with multiple sclerosis (MS) to postpone or deviate from recommended care — including appointments, imaging scans, and laboratory tests, a survey found. But notably, while most patients perceived their disease-modifying therapies as an added risk factor…

I failed the complaint challenge. The goal was to go 24 hours without complaining — no complaining about anything. Yet while the objective is commendable, a win is nearly impossible. I’m not much of a complainer, and I still fell short. I’d venture to say that many others would, too,…

Photo courtesy of Amy Thompson Day 18 of 31 This is Amy Thompson’s story: In April 2018, just after my 21st birthday, I was diagnosed with relapsing-remitting MS. My whole world was turned upside down and I couldn’t find anyone I could relate to. That…

Photo courtesy of Jess Faulds Day 17 of 31 This is Jess Faulds’ story: My name is Jess, and I am a 28-year-old woman from Alberta, Canada. Ask anyone who knows me and the two things in life that I am most passionate about are food and…

Photos courtesy of Daana Townsend Day 16 of 31 This is Daana Townsend’s story: My name is Daana Townsend, and I was diagnosed with RRMS in March 2004. I was 23. My mother and aunt also have MS. My treatment journey started with Avonex…

I glanced at the clock: 15:51. I was relieved. For some reason, I’ve been obsessed with time lately. I’m not sure if it’s due to lockdown anxiety or the ups and downs of my multiple sclerosis, but time has…

Day 15 of 31 This is Angela Griffin’s story: I was with my daughter-in-law when she was first diagnosed with MS. I watched the doctors perform a lumbar puncture. As soon as I saw their faces, I knew what they would be telling her. Those precious few…

Day 14 of 31 This is Dr. Conor Kerley’s story: My name is Conor Kerley. When I was first diagnosed with MS at age 15, my first question was: will I still be able to play sports? I was diagnosed after three major relapses in eight months…

Day 13 of 31 This is Susan Carey’s story: My name is Susan Carey, and I was diagnosed with MS in 2004 at age 14. As you can imagine, it came as a surprise to me and others. Having to go through puberty with a chronic illness…

Day 12 of 31 Dr. Gretchen Hawley is a physical therapist who specializes in treating people with MS. These are her words: There are five principles that, if integrated into your routine, will provide a bigger bang for your buck when it comes to strengthening and improving your mobility.

Researchers in the U.K. are seeking patients who found it difficult to return to work or school after a diagnosis of multiple sclerosis (MS) or COVID-19 to participate in a survey that aims to gather more data on the physical and mental health of individuals with these conditions.

Day 11 of 31 This is Shane Stanley’s story: My name is Shane and I am 29, living with MS since 2011. In the beginning, I experienced mild symptoms until they progressed in 2018. From that time, I have realized that MS is a gift. It has taught me…

Day 10 of 31 This is Trishna Bharadia’s story: I’m Trishna Bharadia, I live in Buckinghamshire in the U.K., and I have MS. I was diagnosed in 2008, age 28, after several years of vague symptoms, like feeling pins and needles, losing the strength in my hands, losing the…

Cheryl Hile and her husband, Brian. Photo courtesy of Michael Moberly Day 9 of 31 This is Cheryl Hile’s story: My husband jokes he knew I was a real runner when I asked him at a 10K, “Is the course accurate?” I was running fast and having…