“Self-advocacy” sounds so empowering and clean when you say it out loud. A neat, controlled, confident phrase. It makes you feel like the kind of person who knows exactly what they need and is not afraid to ask for it.
Living with MS and working in the MS space has taught me it is rarely that simple.
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Featuring Barry A. Hendin, MD
MSAA’s Chief Medical Officer
Question: What types of visual disorders may be caused by MS, and are any types of visual issues not typically associated with MS?
Answer: Visual signs and symptoms are common in multiple sclerosis and ultimately affect the majority of people with MS at some time in their lives. Problems occur when there is demyelination of the optic nerve or the brain stem centers that control eye movements.
Continue readingBy Dr. Eva Jackson
For many years, my health declined, and I found myself searching desperately for answers. I reached out to my healthcare team, at times pleading for their help to uncover what was causing my condition to worsen. Initially, I was diagnosed with dystonia, not multiple sclerosis (MS). As I sought second opinions, it became clear to me that many people struggle to advocate for themselves within the healthcare system. I also realized that healthcare professionals may feel threatened when patients seek external advice or opinions.
Continue readingBy Stacie Prada
Lately, I’ve been pausing periodically throughout each day to ask myself, “How do I want to show up today?”
It only takes a moment, just enough time for a brief inhale and exhale. It allows me to shake loose whatever thoughts are running through my mind and start fresh. I like to imagine I’m shaking a marked-up Etch-A-Sketch toy to create a clean surface ready for whatever I want to draw.
Continue readingFor the average person, catching a cold is a minor inconvenience—a few days of tissues and cough syrup before bouncing back to work. But for those of us living with multiple sclerosis (MS), the narrative is often drastically different. We know that a “simple” bug can feel like a seismic event. As one community member vividly shared, “mundane ailments can knock us down for the count.” What might be a fleeting annoyance for our friends and family can hit us with the force of a freight train, leaving us drained and vulnerable.
Continue readingWhen living with a chronic illness like multiple sclerosis, building a community for yourself of people who truly get it is incredibly valuable. Having a support network in your life of people who are there for you in easy times and hard can make all the difference. A support network can be made up of neighbors, friends, and family members you see regularly. And, with the variety of digital options, your support network can easily be found in virtual forums, like MSAA’s My MSAA Community.
By: Dr. Eva Jackson
For the past 15 years, members of my community have routinely organized vision board parties toward the end of the year or at the start of the new year, with an emphasis on goal setting. Personally, I have often felt uncomfortable during this period, as traditional goal setting has never resonated with me. I tend to set ambitious goals but frequently find myself unable to achieve them, despite starting with clear intentions. This recurring pattern leads me to believe that perhaps my goals are often unrealistic.
Continue readingBy Stacie Prada
I created a vision board years ago that included images of women doing yoga poses I couldn’t do. I attended yoga classes weekly, and I loved how it combined calming breathwork with some of the gymnastics, athleticism, and flexibility that my multiple sclerosis issues had curtailed.
I placed the collage vision board near my makeup vanity, and I didn’t put a lot of effort into tracking it. About a year later, I looked up, and I was startled to realize I could do all the poses on my vision board! Without realizing it, I slowly worked my way toward poses that seemed completely out of reach a year prior. Dancer, feathered peacock, and crane pose had become regular movements in my yoga practice without any periodic notice or celebration. With this realization, my glee absolutely overflowed.
Looking back, I think about how dreaming and acknowledging my aspirations, combined with regularly showing up to yoga class, were the key. They helped me achieve things I hadn’t been convinced I would ever do.
Continue readingWe often talk about the “summer slide” when the heat wipes us out, but winter is just as complicated for our community. Some of us are celebrating the drop in temperatures, while others are dreading the daily pain. It really shows how different MS can be for everyone. We are all just trying to figure out how to handle the thermostat without losing our minds.
Continue readingFeaturing Barry A. Hendin, MD
MSAA’s Chief Medical Officer
Barry Hendin, MD
Question: What should care partners do if they suspect depression in their loved one with MS, and what are the treatment options?
Answer: Like other medical illnesses, depression is often a shared experience between the person experiencing it and their care partner. It’s helpful to be an empathetic listener and supporter, rather than believing that it’s up to you to fix it.
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