Being Cool

Posted on July 25, 2025 by MSAA

By Stacie Prada

More than any other time of year, summer shares my not-so-secret secrets. I’m not as thin, flexible, or strong as I used to be. It’s easier to disguise and ignore in colder weather when clothing is bulkier and outdoor activities are less promising.

This time of year encourages reality checks for how I look, feel, what I’m able to do, and how things that used to be easy now require more effort. While natural aging is challenging, multiple sclerosis adds even more difficulty to living well in later years.

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Adapting, Not Withdrawing: Enjoying Summer with Multiple Sclerosis

Posted on July 21, 2025 by Claudia Chavez

While summer heat can be exhausting for anyone, individuals with multiple sclerosis (MS) often face added challenges due to heat intolerance and fatigue. Heat sensitivity, also known as Uhthoff’s Phenomenon, refers to a temporary worsening of MS symptoms caused by overheating. Fortunately, there are proactive steps we can take to support our health and well-being while still enjoying all that summer has to offer.

For those living with MS, heat intolerance and fatigue can significantly impact daily activities. Something as simple as sitting in a warm car without air conditioning or spending just a few minutes in the sun can quickly drain energy levels. But with a little planning and self-awareness, it’s possible to make the most of summer while staying safe and comfortable.

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Beating the Heat with MS: Lessons from the Walk-In Freezer

Posted on July 9, 2025 by MSAA

By Samuel Fitch

Before my multiple sclerosis (MS) diagnosis, I never understood why I always felt so warm—especially compared to others. Looking back, I realize how fortunate I was to work in my family’s restaurant. One unexpected benefit? A built-in cooling station. On particularly hot days, the walk-in freezer or refrigerator offered immediate relief when my body felt overwhelmed by the heat.

Like many of my fellow MS warriors, managing body temperature—especially in the heat—is a constant challenge. For me, warm weather isn’t just uncomfortable; it can completely derail my ability to function the next day. It’s frustrating because, here in Western New York, beautiful sunny days are few and far between. When I miss them, I feel guilty. I want to be outside enjoying them with my family—but sometimes, the risk just isn’t worth it.

So what’s my advice for managing the heat when you live with MS?

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Self-Advocacy: Challenges, Tips, Mentors and Allies

Posted on June 25, 2025 by MSAA

By Stacie Prada

Self-advocacy is hard work. We’re likely advocating for ourselves in tiny ways all the time, and we don’t notice when there’s little to no resistance. Frustration grows when we meet opposition and live with pain and unmet needs.

Barriers to self-advocating: Sometimes, I don’t know what I need, I’m unsure of what resources exist that could help, or I’m not being heard by those who could help me. Even if they want to help, they might not know how.

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The Art of Asking for What You Need

Posted on June 23, 2025 by Claudia Chavez

I’ve realized that learning to ask for what I need is an art form. While this may come naturally to some, others may find it difficult to put into words. Advocating for ourselves takes self-awareness, clarity, and practice — but the good news is that these skills can be learned and strengthened over time.

At our core, humans are wired for connection and belonging. Advocating for ourselves and asking for what we need can feel risky because it carries the fear of being rejected, dismissed, or seen as “too much,” “too needy,” or “difficult.” And yet, we all have an innate need to feel heard, validated, and understood.

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Knowledge is Power, and so is Self-Advocacy

Posted on June 4, 2025 by Kate

Living with multiple sclerosis often means navigating a complex healthcare system, where self-advocacy becomes essential. Recently, I experienced firsthand how crucial it is to stand up for yourself in medical settings.

About 6 months ago, I made the decision to switch to a new neurologist, mostly due to the cost of my annual MRIs. I did my research and found an MS specialist 1.5 hours away and decided to give him a try. I arrived at the office, was pre-screened, and all seemed well until the doctor came in and I found myself being questioned and patronized in a way I have never experienced in a medical setting (or any setting really). Despite living with MS since 2016, doing well on the same DMT for 6 years, and working for MSAA for the past 3 years, the doctor asked me to justify my treatment and explain its benefits in detail before he was willing to continuing the conversation. I never received a physical examination, he never once asked about my lifestyle, and the entire interaction felt like a test. I guess I passed because he did end up ordering my next MRI and continuing with the same treatment path I was already on. The experience left me feeling unheard and disrespected.

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The AC Staycation

Posted on August 5, 2024 by Kate

As I’ve mentioned in previous posts, I’m a single mom of two young boys (5 & 6) and we live in St. Augustine, FL. It’s hot here. Really hot. Typically, May through October are well into the 90s, and bouncing from one airconditioned space to another is essential even for my non-MSers brethren. To be fair, I like to escape north to the Blue Ridge Mountains when I can, but that only happens once or twice a summer, so I’ve had to get creative on how to spend all of that indoor time. I’m not great at generalizing how I think you should fill your time, so I’ve decided to list out a few things I’ve found to be highly enjoyable as an artsy nerd mom.

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Spring Cleaning and MS

Posted on April 6, 2022 by MSAA

With the spring months upon us, so too comes the annual spring-cleaning tradition…”out with the old, in with the new,” isn’t that what they always say? And for many, the decluttering process is a very therapeutic activity, making your home interior both more aesthetically pleasing and increasing the accessible nature of your environment. But this type of deep cleaning of your home can also be quite taxing, even for those who are able-bodied and not living with a chronic condition like multiple sclerosis.

For those who are considering a potential “spring cleaning project”, but are concerned about their ability to do so, here are a few helpful tips to keep in mind:

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Shaping the MS Experience: Facing Change

Posted on March 25, 2022 by Melissa Young

Let’s face it, change is hard, and you may feel MS causes you to be in a constant state of flux. Where you are always having to modify, adapt, adjust and shift. No two days are ever the same.

That got me thinking about the word CHANGE and how we accept change in our lives. Changes in your life require faith, dedication, and perseverance. Did you know that the true test of intelligence is not how much we know, but how we behave when we don’t know what to do?

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10 Tips to Help You Keep Cool This Summer

Posted on June 12, 2019 by MSAA

The official start of the summer is a little more than a week away. ‘Tis the “sea-sun” for beach trips, vacations, cookouts, visits to the pool and more! While the summer can be an exciting time, for people with multiple sclerosis, the stress of heat-sensitivity can make fun activities a challenge. We’re here to offer some tips on how to stay cool all summer long so you can enjoy your time with friends and family in the sun!

Stay hydrated! Make sure to drink plenty of water throughout the day to avoid dehydration.
Wear loose-fitting, cotton clothing. Avoid dark colors if possible that can attract more heat.
Take a cool bath or shower.
Do indoor activities during the hottest part of the day – take a trip to the movies, stroll around the mall, go to a museum, or any other local spots with air conditioning.
Carry a portable, battery-powered fan to outdoor events.
Close the blinds and shades on windows facing the sun to keep out the sun’s heat – this will also help fans and air conditioners cool more efficiently.
Dryers, dishwashers, and ovens produce a lot of heat – try to use them in the early morning and late evening if possible.
Wear a hat when you’re outdoors to help better shield your face from the sun. Make sure to wear your sunglasses, too!
Always wear sunscreen, even if you’re only outside for a short period of time! Avoiding an uncomfortable sunburn that can increase your body temperature is important during the hotter months.
Popsicles, ice cream, and frozen yogurt are tasty treats that can also help you cool down, and a great excuse to sneak in a summer snack here and there!

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