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 Kyle

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!

How Cool Are You?

Posted on June 22, 2015 by MSAA

Summer is fast approaching, so now is a perfect time to remind everyone about MSAA’s Cooling Program.

As the heat starts to build, so do requests for this free MSAA service, so please place your order now before the summer rush. Please know that there is a five-year wait period to reorder any cooling products if you have already received items through the MSAA Cooling Program.

You can download the MSAA Cooling Program application or call MSAA at (800) 532-7667, ext. 130 to request an application by mail. Have a cool and fun summer!

Not eligible to apply for MSAA’s Cooling Program? The following Stay Cool Tips can be used to help fight the heat:

Portable or personal fans are an inexpensive and quick way to cool the body. The fan helps to circulate the hot air and move it away from the body.
- Try putting a cool rag in front of the fan to circulate the cold condensation from the rag.

Be mindful of clothing choices. Wear lightweight and loose clothing that allow for air circulation.
- Embrace light colors. Dark colors absorb light and heat, light colors reflect light.

Search for indoor activities in local shopping malls or stores where air conditioning is always free.
- Window shopping at the mall or a mid-day matinee at the movie theatre is a great way to take advantage of the often cool air provided at these locations.

Cool Summer Activities

Posted on June 5, 2015 by Samantha Schech

As most schools around the country end their school year, many parents are finding themselves searching for activities that will preoccupy their children, but that are also accessible for the whole family. While many folks may opt for the parks or playgrounds in the warmer weather, individuals with MS may have to get creative to try and find activities that can be taken indoors during those warmer days to help avoid some of those heat-related symptoms.

But how can you entertain your children, before they tear through every cabinet in the household looking for something to do? Parents magazine provides some online fun activities that can be modified for any age group. Thinking about, or having a list of activities on hand may be helpful for days where MS symptoms are present, or fatigue has taken a toll.

Local programs are also available to children during the summer months. Many of these activities can be completed indoors to help beat the heat. Local libraries may have reading programs or special events; often they post these on their social events calendar or on a bulletin board in the lobby. Stores like Lowe’s, Home Depot or Joann Fabrics have free workshops available for families or children; you can call around to local stores to see if a calendar or events listing are made available.

Get creative this summer and see what fun activities you can find that can be completed indoors. Do you have any cool plans this summer?

Things to Consider for Summer Traveling

Posted on June 1, 2015 by Angel Blair

It’s here again – the summer season is upon us! Though for some people it actually may feel like it’s been here for quite a while depending on where you live. But the recent Memorial Day holiday really kicked off the start of the season for most around the country. With the arrival of summer some people start making travel plans and agendas for how to spend these months. Trying to schedule a trip can be stressful, and for those traveling with a disability or chronic illness, the planning process can be extra demanding. Ensuring certain accommodations are in place, scheduling stops and making arrangements for accessible travel are some of the necessary steps to take when planning a trip. Here are some things to consider in the planning phase:

Where are you going?

If they are needed – does your destination have disability accommodations? Like accessible bathrooms and sleeping areas, accessible activities/restaurants/shopping/travel routes within the town? It may help to call hotels and destinations beforehand to ensure their facilities meet your needs. This can help to decrease the stress of arriving at your destination and not having what you need to enjoy your trip.

What will you need for your trip?

Packing necessities like toiletries is just one part of the process. Having the appropriate amount of medications/treatments, equipment, and other products is important to ensure you won’t be left without something significant for your health condition while you’re away.

Who can you contact for help?

While planning a trip you will find there are resources available that can help you with the process. For example, you can work with a travel agent who specializes in accessible and disability travel that has knowledge on how to find locations and services that are accommodating for your requests. You can also get in touch with disability organizations and resources in the area where you’ll be traveling for additional assistance regarding local services and what’s available. Websites like Disabled Travelers and Society for Accessible Travel and Hospitality can provide information for accessible travel needs as well.

Do you have plans for the summer? What does your planning process look like?

Tips for Staying Organized

Posted on April 15, 2015 by Samantha Schech

Organization is a personal character trait; to some it comes naturally, to others it is a struggle. One thing is certain; organization is about finding a system that works for you. There is no need to justify something that works to your benefit, regardless of other opinions of that system.

Consistency is one of the more important factors when discussing organization and managing one’s life. They say it takes 21-days or three weeks to make a habit. This may be true for some, but it is stressful to think about counting down 21 days just to find some level of consistency in a routine.

For those who struggle with being organized, or feel that they need more organization to help with day to day activities, the following suggestions or tips may be helpful:

Sort at the Source:
Stay on top of mail and paperwork as it comes through the door. Sort through the junk mail and place it in the trash or recycle bin. Place bills or other important documents in a space that is meaningful for you, and where you will know where to find them when needed.

Put it Away:
It sounds like something you would tell a child, but this simple step can help those who seem to misplace items. You are more than likely to remember where something should be, but is it in its place when you go to look for it? When you are done with an item, put it back in its place. When items get left out of place, they can easily be lost.

Allow Plenty of Time:
When we are rushed, mistakes can happen or things can get lost. Allow yourself plenty of time to complete a task and complete one task at a time. Time management and organization often go hand in hand.

What tips or suggestions do you have regarding organization? Have you found a process that works for you?

Keeping Track of Your MS

Posted on January 30, 2015 by Samantha Schech

We all trust and hope that medical providers keep accurate records and maintain documentation in an orderly fashion. But things happen – papers get misplaced, lost, or destroyed and when this happens, the patient suffers.

So what can be done in advance to reduce the chances of this negative effect?

Keeping track of your medical records is the best way to assure that the information about your MS treatment stays organized. However, this can mean different things to different people. Finding a way to organize and keep your medical records in a way that makes sense to you is important.

Some individuals may find sorting records by year helps to track progression or change over time. While others prefer to sort based on testing or specialty, tracking things such as MRI results, bloodwork, or therapy. No one way is better than another. It is about finding a way that makes sense to you and one that will help you along the way.

Take into account the type of materials needed to organize your medical records. Three-ring binders are helpful in securing documents, making sure they stay in place and are not easily lost. Dividers and tabs can be used to distinguish a change in the record, whether it’s a year, type of test, or doctor. Labels written on with dark marker can be placed on the outside of a binder to help identify what is inside.

Depending on the size of your medical record, bring the record with you to an appointment. It can be used as a reference with the doctor, or can be a place to take notes during a visit. After the appointment, ask the office staff to make a copy of any records discussed at the time of the appointment and place them into the organized medical record.

By keeping track of your medical records, you are taking an active role in your health care. In which way do you keep track of your MS? Which system works best for you?

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