Traveling with Health Issues

Posted on July 25, 2023 by MSAA

By Stacie Prada

My definition of travel has changed as my Multiple Sclerosis symptoms have progressed. Travel used to be trips that included overnight travel, and even one night away from home might not have qualified as “real” travel. Now travel includes going places for periods that disrupt my daily routines, and that means day trips solidly allow. Travel includes going anywhere outside of my normal routine. It demands having health issues considered and accommodated to ensure I have fun, meet my body’s needs, and don’t stress too much.

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Plan, Prepare, and Enjoy the Trip!

Posted on July 14, 2023 by Claudia Chavez

Are you planning a trip soon? Sure, getting to the destination is beautiful and all but what about all the planning that goes into the trip? Between the research, packing, reservations, and cost, traveling can be exhausting. Nothing beats an amazing vacation, but how do we make sure we are prepared for it all?

If you are anything like me, you will most definitely forget to pack something (and end up looking like a tornado tossing around the luggage to find it). Traveling with MS can be easy when you are prepared and have a contingency plan.

Here are some tips that can make your trip run as smoothly as possible.

Depending on your destination and needs, it may be a great idea to request a doctor’s note listing your medications and any specific medical needs you need accommodations for.
Bring the necessary storage devices, such as a cooler for injections, a needle clipping device, and storage must-haves.
Consider your medication dates if you take a DMT. For example, work around your infusion date.
Call the hotel in advance to verify the hotel has a refrigerator in the hotel room, or request a refrigerator for your room if you have medication that requires refrigeration.
Bring a list of your providers’ contact information just in case.
Bring extra medication in case you accidentally misplace it or damage it.
If you are traveling by air, you may contact the Transportation Security Administration (TSA) for additional information and to familiarize yourself with the Air Carrier Access Act (ACAA) that protects against discrimination.
Find MS support when traveling abroad by visiting the Multiple Sclerosis International Federation directory.

Knowing what to expect when traveling can ease your worries. Multiple Sclerosis doesn’t have to weigh you down. Don’t let anything stop you from taking that dream vacation you have always wanted. Plan, prepare, and enjoy the trip!

Take Control of Your Summer

Posted on June 30, 2023 by Courtney Blewett

Summertime is here and that means backyard barbecues, lounging on the beach or by the pool, outdoor fun, and leisurely walks. For many folks, these activities are enjoyable activities in the summer months. However, if you have Multiple Sclerosis, these activities on hot summer days can be challenging.

Exposure to warm temperatures can cause an exacerbation of symptoms for heat-sensitive individuals. It may feel like your world narrows during the summer season, but there are many ways to stay cool and reclaim the carefree feeling of the season.

Bring the beach to you! Sitting on the beach in the blazing sun may be the last place you want to be if you have heat sensitivity. So how about getting the “beach vibe” while still being cool at home? You can create the full scene right in the living room of your home. Grab a beach chair, turn on some feel-good music, and sit back and relax in the AC. Nowadays, there are a plethora of candles that have scents that smell just like the beach. They are so realistic, you’d swear you’re smelling the same thing!

Cook-in instead of a cookout! Bring your friends and the barbecue to the comfort (and coolness) of your home. Chop up some bright, fresh fruit and mix up some frozen yummy drinks. Order takeout instead of cooking by the stovetop, or perhaps one of your friends is a grill master and enjoys grilling up some goodies.

Enjoy the cool, late summer nights! One of the best parts of summer is the longer days and the cooler evenings. Take advantage of the breezy summer nights and sit outside. Watch nearby fireworks, or simply just sit and listen to the sounds of summer.

The summer months can be a challenging time for heat-sensitive individuals. The key is to plan ahead and do what makes you feel the most comfortable. Get creative and make your summer experience your own. Make this your best summer yet!

Ask the Expert – Speech Difficulties

Posted on June 29, 2023 by MSAA

Featuring Barry A. Hendin, MD

Barry Hendin, MD

Question: What types of speech problems may be caused by MS and what can be done to improve these issues?

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Heat and MS

Posted on June 28, 2023 by MSAA

By Suzanne Marriott

It is known that exposure to heat causes a worsening of symptoms in people with multiple sclerosis. This was certainly true for my husband, Michael, who suffered from MS. Our first experience with hot weather was when he was first diagnosed and was waiting outside his doctor’s office for me to pick him up in the car. Unfortunately, I got confused trying to figure out the correct exit from the parking garage and he was left standing outside in the warm afternoon. When I finally picked him up, he said, “Why did you do this to me?”

We hadn’t realized that the heat would affect him. We’d both thought that he’d be better off waiting for me to pick him up than walking all the way to the car. But he had weakened considerably in that short period and had been afraid of falling down. He later apologized to me, realizing I hadn’t meant to abandon him to the heat, but we had learned an important lesson that day, one we never forgot.

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Summer Frozen S’mores

Posted on June 23, 2023 by Melissa Young

These frozen S’mores are the perfect treat for a hot summer day. They’re easy to make and ideal to keep in the freezer when you want a snack. Layers of chocolate pudding and marshmallow creme make these frozen S’mores the best summer treat for all!

Ingredients

1 box instant chocolate pudding 6 serving size
2.5 cups cold milk
16 graham crackers
7 oz marshmallow creme
4 oz cream cheese softened
8 oz frozen whipped topping thawed

Instructions

Line a 9×13 pan with parchment paper, allowing the piece to overhang on the edge of the pan.
Whisk together the pudding mix and milk in a medium bowl until smooth. Pour into a 9×13 pan and spread into an even layer.
Place in refrigerator to chill while you mix the marshmallow layer.
In a medium bowl, beat cream cheese and marshmallow cream until smooth. Fold in whipping topping gently.
Spread the marshmallow layer over the chilled chocolate layer and cover it.
Freeze layers for about 8 hours, until firm enough to cut through. Use the parchment paper to remove layers from the 9×13 pan and place them on a cutting board.
Break 16 graham crackers in half. This will allow for a top and bottom to make a sandwich. Slice pudding/marshmallow layers into 8 squares the same size as the graham crackers.
Sandwich the frozen square mixture between two graham crackers.

Be sure to store them in the freezer so they are ready to grab on the go and enjoy!!

Enjoy yourself, you deserve it.

Posted on June 21, 2023 by Claudia Chavez

It’s no secret that summer can be debilitating for those with MS. The heat and humidity can be a nightmare for so many of us. While everyone experiences summer differently, I think we can all agree that it’s important to plan head to ensure we are as comfortable as possible during these summer months.

Being prepared is more than bringing water, an umbrella, or a cooling vest. Being prepared also means understanding your limits and respecting them. It can be difficult to skip plans or cut them short when we need a break. It’s okay to sit down under the shade when our body is getting overheated. It’s okay to sit back and relax while friends and family continue with certain activities on their own. It’s okay to turn down plans when we know certain events will not sit well with our bodies. It’s okay to put your needs first.

Modifying certain activities can allow us to enjoy the outdoors this summer. Feel comfortable voicing your opinion when choosing a vacation destination, planning the activities for the day, or simply choosing the hotel bed closest to the air conditioner. Your voice matters.

Here are some things to keep in mind this summer:
• Do your research on the weather and humidity of the area.
• Notify your family and friends that you may need more breaks or downtime to relax.
• Declining to go to an event or activity you do not want to participate in or may be physically detrimental is self-care.
• Have fun and relax!

Summer is typically a time for fun and excitement and it’s easy to get wrapped up in the fun and forget that our bodies might need a bit more rest. Sharing your needs and feelings with your friends and family may help come up with a plan to ensure that everyone is safe and comfortable.

Summer Heat and Changing Goals

Posted on June 14, 2023 by MSAA

By Stacie Prada

Each day, week, weekend, season, and year, I like to think about what my goals are. What will I want to accomplish? When it’s over, will I have a sense of fulfillment for the choices I made and how I spent time?

Each season or time of year has a different set of inherent challenges that aging and multiple sclerosis make more challenging. Spring and autumn consistently trigger fatigue and body malfunctioning for me. I blame the weather changes and obligation surges.

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Be Proud of Yourself

Posted on June 9, 2023 by Dana Mietus

By Dana Mietus

Every summer, a familiar pattern emerges. The weather warms up after months of being indoors, and I find myself anticipating exciting summer events and vowing to make the most of each one. Particularly in the month of June, when Pride celebrations are in full swing weekend after weekend.

Yet, every summer, I find myself overwhelmed by these events that I think should excite me. The adrenaline crash from giving up on plans leaves me feeling tired, guilty… and oddly relieved?

Let’s be candid. Summer can be hot, humid, demanding, busy, and downright exhausting. So why do I look forward to it every year? The truth is that some of my favorite memories took place in the summertime. How is this possible when it now fills me with dread?

The answer lies in managing my own expectations.

I tend to view every summer plan and event as mandatory, believing my presence is necessary for the summer to be a “success.” But when did summer become a graded experience? My fondest summer memories come from organic moments spent outdoors with loved ones—no special events, no strict schedules, and no expectations.

Ironically, my attempts to recreate those moments by overloading my schedule with events have led to my inevitable overwhelm and disappointment.

Take Pride, for instance. I’ve yet to attend my local pride parade, which would lead me to fear that I was missing out on a crucial yearly event and that I was guilty of not showing up for my own community.

But let’s consider a few things:

I’m susceptible to heat and easily overwhelmed by crowds…so of course it may not be the best idea for me to attend a parade in the summer heat. No wonder just the thought of attending makes me fatigued.

Why didn’t I connect these dots sooner? And what’s the solution?

Here’s an idea I’m going to try and implement:

First, reflect on what genuinely brings you joy and why. This could be as general as spending time with friends or being outdoors. Or you can apply it specifically to an upcoming event. For instance, I might have an easier time in crowds if it is in a different setting I enjoy, such as concerts or sports events.

Next, objectively list some factors that hinder your enjoyment of these events. In my case, it’s the heat, crowds, and difficulties accessing restrooms or parking. These are all things that might make me apprehensive about attending an event.

Plan accordingly or consider trying something new. How can I lessen my apprehension? Would taking an Uber help to alleviate the stress of finding parking or getting into a scorching hot car after an outdoor event? Maybe I can locate a nearby restaurant or café to cool down and have access to a restroom afterward. Instead of attending a pride parade, I could explore a pride-themed event at my local bookstore or library.

Lastly, take a moment to rest, recuperate, and most importantly, be proud of yourself for prioritizing and caring for your needs. If you’re anything like me, this may be easier said than done. So let me say it to both of us this time:

I’m proud of you.

It’s Cool to Be Cool

Posted on June 5, 2023 by Emily

The summer months are chock-full of fun activities, and most of these activities are outside. For those living with MS, being outdoors for an extended period of time can be taxing on both the body and mind. I have a list of things that I do in the summer months to stay calm, COOL, and collected when being outdoors, so I too can enjoy these fun activities with everyone else.

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