Summer Travel Tips for Flying With MS – Part 2

By Jeri Burtchell

Most people who have MS take medications. Be sure to keep them in your carry-on bag to prevent mishandling or severe temperature changes. Keep a note in your wallet or purse with your emergency contact, medications, conditions, allergies and medical history in case anything should happen away from home.

Pack a sweater in your carry-on. Even if you are traveling from one hot place to another, airports and planes can be veritable iceboxes. Besides using it for warmth, a cushy sweater can double as a pillow.

Pack your own snack. Fruit or nuts, a sandwich or chips, are all going to be cheaper if you bring your own. Airlines occasionally provide snacks, but not always, and if they have snack boxes for purchase you can expect to pay premium prices. The only thing you can’t bring is a drink but most flights offer a free beverage.

Which to choose, the aisle seat or the window? Windows seats have the added benefit of not only providing a view, but a “wall” on which to lean if you tire easily. Aisle seats make trips to the restroom easier. Middle seats, for most passengers,  are the least desirable.

Pack a wall charger for your smartphone in your carry-on. Your itinerary, email and family may only be an electronic device away, but if your battery dies and the airline lost your luggage, you will be cast adrift in an unfamiliar place, unable to access anything. You can usually find an outlet for your charger in any airport terminal.

If you rent a vehicle at your travel destination, ask for one similar to yours at home. Trying to figure out where the wipers and lights are while navigating a strange place just adds unneeded stress.

If you follow these tips, you can avoid unnecessary stress, leaving you free to enjoy your stay. Don’t overdo it, though! Be sure to drink plenty of fluids so you don’t dehydrate, take naps when you body tells you and pace yourself. Make your visit memorable for all the right reasons. Happy travelling!

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

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Summer Travel Tips for Flying With MS: Part 1

By Jeri Burtchell

Summer travel by air with multiple sclerosis doesn’t have to mean anxiety and exhaustion. With a few tips your journey can be smooth sailing. Here are some timely tips gathered from MS patients who travel frequently.

Before you leave home, search the internet for your destination to learn about the terrain you’ll be visiting, the weather, and your hotel’s amenities. You can even use Google Maps’ Street View to plan your excursions ahead of time. Having an idea of what to expect allows you to design your trip for maximum comfort. Likewise, when making hotel reservations, ask for an “accessible” room. They have more grab bars in the bathroom, and often lower toilets and sinks, wider doors. They are usually located closer to the elevators or on the ground floor.

When booking your flight, request a wheelchair. Even if you don’t use one at home, it makes conquering an airport much easier. Not only do you conserve energy and stave off travel fatigue, but the assistants who push you know where they are going and can get you there quickly–helping you catch connecting flights with ease. If you have a cane, bring it. Like a red flag, canes signal disability and airline staff go out of their way to assist you. No matter if you are having a good day at home and don’t expect to need it, air travel is taxing and you will be glad you brought your cane at day’s end.

If you are using a carry-on bag larger than a purse or small backpack, invest in a roller bag. The wheels and long handle are going to make lugging it around with you a lot easier. When checking bags, tie a bright piece of cloth on the handle of each one so you can spot them quickly in a sea of luggage that all looks the same on the carousel in baggage claim.

Security check points are notorious for long lines and hassles, but you can make things easy on yourself. Leave your belt at home and empty your pockets into a baggy stored in your carry-on ahead of time. If there is an outside zippered pocket on your roller bag, use that space for your ticket and ID, along with your ziploc full of liquids that need to be separate from everything else for inspecting. Slip-on shoes are a convenient alternative to ones that lace up and requires no sitting or bending to put them back.

Stay tuned for more tips on Wednesday!

*Jeri was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

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Running on Empty

Have you ever been in a car which has run out of gas? If you haven’t, the car slows… you may coast a bit, but quickly movement putters out. For many people with MS, fatigue can be much the same, one minute you are moving around and then suddenly the momentum changes and your energy level drops. For some people, they may even feel that to take one more step or motion is too much and may need to immediately sit or rest.

In a car there is a gauge which shows you when the gas tank may be getting low, people are not so easy to read. Some people may even feel as though the internal gauge is broken.

So, what can you do to try and prevent your engine from stopping?

Some quick energy conservation tips:

  • Listen to your body
  • Plan for your day (try not to plan too much)
  • If you can, try to schedule rest breaks into your day or activity
  • Talk to your doctor about your experience

For more in depth information on MS Fatigue see the following link: http://mymsaa.org/about-ms/symptoms/fatigue/.

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What is a Pseudoexacerbation?

For many individuals with MS, the summer can be a difficult time. The heat and humidity may cause MS symptoms to flare and become agitated because of heat affecting one’s body temperature. For some who experience a worsening of symptoms in warm environments, this may actually be an example of a pseudoexacerbation. A pseudoexacerbation is a temporary worsening of MS symptoms, without the presence of actual myelin damage or inflammation. Other than heat, individuals may experience this as a result of other illnesses or infection. It is important to take note and be aware of what symptoms you are experiencing, how long they occur, and your environment surroundings. If you find yourself heat-sensitive, try to avoid warmer settings. Stay in air conditioned places, do outdoor activities either early in the day or after sunset when the temperature is cooler, and wear lighter weight clothing when needed. If you have concerns about or are experiencing new symptoms it is important to be aware of your activity and surroundings, especially during these warm summer months!

For more information on pseudoexacerbation, see the MSAA brochure, Understanding and Treating MS Relapses, http://mymsaa.org/publications/understanding-treating-relapses.

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A Women’s Retreat

For the past 6 years, as a Regional Director for MSAA, I have done many patient and professional healthcare provider education programs, on many diverse topics related to MS.  But my favorite programs are those aimed specifically for women with MS.   We recently had a Women’s Retreat in Sheridan Wyoming, and 30 women with MS shared a very special weekend of fun, relaxation, education and friendship.

MS specialists like Amy McKay, a nutrition and exercise guru from Texas, shared dozens of tips to help maintain a high quality of life by trying to incorporate movement, healthy eating, balance in life, and finding- and sharing – happiness. The weekend included group discussions, new friends, and a chance to discover hidden talents and create a beautiful summer wreath.  Add in the chick flick movie on Saturday night and you couldn’t find a happier group of women!

Of course we also learned about the newest MS therapies, and how to use the MSAA SEARCH program to determine, with your neurologist, the best course of treatment for each individual.

It is always hard on Sunday afternoon to say goodbye to all the new friends I have made at the retreats, and I see that sentiment echoed throughout the room.  Many friendships, support groups and walking buddies are started during those three days!

When we have a women’s retreat in your neck of the woods, I hope you will consider signing up.  We would love to have you!

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The Other Side of the Lens – Working with Neurology Now

What a blessing this past year has been working with MSAA. After having announced my multiple sclerosis (MS) publicly, I have become overwhelmed with ardent, sincere responses and appreciation, stories, and gratitude.

Through my role as an ambassador for MSAA, I had the wonderful honor of being recognized  in the publication, Neurology Now. Managing editor Mike Smolinsky and photographer Annie Levy requested a photo shoot and interview with an individual living with multiple sclerosis to feature in their publication, and I was chosen. It was a great honor to work with these two professionals.

Having my own portrait taken is, to say the least, a rare occasion for me. I knew Annie’s body of work, her stunning portraiture. Looking through her lens was not intimidating for me, but rather, it seemed no different than looking straight into her kind eyes. I was able to relax, feel comfortable, and be me. And of course, that is every photographer’s dream.

Finding out we lived so near to one another in Brooklyn, Mike and I were able to take some time to grab a coffee and meet in-person. For someone so busy to take the special time out of their day to get to know a subject made me realize that I was working with a rare and world-class group of people. After a full, enriching conversation, Mike and I had to part, knowing full well we could have gone on, and on, and on sharing ideas and stories until the sun went down.

Being recognized and working with the team at Neurology Now was a true joy, and an honor. Because of all the intricacies involved living with MS as a young female photographer, it feels liberating to speak openly to people who want to listen. Throughout the month my mailbox has claimed the most touching letters from Neurology Now readers all throughout the country. Getting to know these people and their stories, as well as feeling their gratitude and openness, has really been the true blessing. There is something about anonymity that can be a catalyst for conversation and sharing, straight away. Without judgment or fear, I have never known or have gotten to know others through such open lines of communication.

A very tender thanks to Neurology Now,  MSAA, and to all the readers out there who I can now call my friends.

Check out Anna’s portrait in Neurology Now!

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Parting Thoughts…

The following is a post from Amanda Bednar, MSAA’s Manager of Community Relations, who will be sadly leaving us after 9 years of being a part of the MSAA family. We will miss her!

For the past nine and half years I have enjoyed being a part of the staff at MSAA as well as the larger multiple sclerosis (MS) community. When I first started here, I came aboard wanting to learn more about multiple sclerosis but more importantly, combine my skills as a communications professional and my desire to make a difference into a career. Looking back, I can certainly say that my career at MSAA has been all of that and more. I have come to have a profound respect not only for the MS community but for my colleagues and the work that is done to make sure MSAA’s mission continues. I am honored to have worked with so many kind and generous individuals.

The one thing I will miss the most are the emails and testimonials that I have been able to read from you, our clients. Every time I read a guest post in this blog or meet an individual at a program or speak with a client about their Stories to Inspire column in The Motivator, I am often left awestruck at the resiliency and determination of the MS community.

While I am leaving my day-to-day duties at MSAA, I will not be leaving the MS community. I plan on transitioning into a volunteer role, where I hope to still be able to continue supporting MSAA’s mission of improving lives today!

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Have you tried My MS Resource Locator?

MSAA offers an online database with resources in ten key topic areas that range from helping you locate a neurologist specialized in MS to finding a Social Security Disability Attorney.

In addition, each of the ten topic areas provides a “guide” designed to explain why specific resources are listed, highlight important questions to ask when contacting resources, and identify next steps.

Try it today! http://resources.mymsaa.org/

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Swim for MS News – July 2013

The July 2013 Winners are…
Missy Franklin Autographed Photo:
Congratulations Julia, for being the top Swim for MS fundraiser during the month of June!

Swimsuit Prize:
Congratulations Kara for winning a Swim for MS swimsuit! This suit was designed and made by HARDCORESWIM!

How do I Swim for MS?
Go the Distance – Individuals or teams set a challenge goal to swim a certain amount of laps, distance, or time during one day or over a set period of time.

Make a Splash – Participants turn fun pool activities into exciting fundraisers such as pool volleyball tournaments, cannonball jumping contests, and more!

How do I receive Community Service Credit?
If you or someone you know needs to fulfill community service hours – Swim for MS! Swim for MS is a “virtual volunteer opportunity” – this means that you contribute as much time as you can – when you can!

  • Register online at SwimForMS.org.
  • Set your challenge goal – Swim 100 laps in 10 hours and raise $150.
  • Ask your friends and family to support your cause.
  • Keep a log of hours swam and track your progress on your page.
  • Once completed, email swim@mymsaa.org to receive a confirmation letter of your hours!

Swim for MS Swimsuit Partnership
MSAA has partnered with HARDCORESWIM to provide exclusive Swim for MS swimsuits! HARDCORESWIM is based in Southern California and all items, from start to finish, are produced in the USA. Two different Swim for MS styles are available for men and women! Check out the Swim for MS page on their site and order your suit today!

In Other News
Please visit our Swim for MS News section on SwimForMS.org for more information on our CaféPress site, as well as our Swim for MS partners, Pura Vida and HARDCORESWIM.

If you have any questions, please contact us at swim@mymsaa.org.

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Tips for Staying Cool and Conserving Energy

As the temperature continues to rise during these summer months there are several ways to help beat the heat and conserve your home energy. Start by trying some of these tips to lower your energy bill and keep your home cool!

  • Keep doors closed to uncooled parts of your home. If you have central air conditioning, close off the vents to any rooms that you will not be using.
    • Tip: The lowest level of a home is often the coolest. If you have a basement, plan to spend most of the day in this room, to avoid over cooling the rest of your home.
  • Using ceiling and other fans, even if you have air conditioning, helps to provide additional cooling and better circulation of the cooled air.
    • Tip: Place a bowl or tray of ice water in front of a fan to increase the chill factor!
  • Seal any holes or cracks around doors and windows, this helps to eliminate cold air leaks. Make sure to seal around window air conditioners with insulation.
  • Close the blinds and shades in windows facing the sun to keep out the sun’s heat and help fans and air conditioners cool more efficiently.
    • Tip: Check out energy efficient curtains or blackout curtains to help keep the light and heat out of a room!
  • Clothes dryers and dishwashers produce a lot of heat. Use them in the early morning or late evening, not during the hottest part of the day.
    • Tip: Wash clothes in cold water and air dry in front of a fan. This tip works the same as the bowl of ice water!
  • Turn off TVs, computers, and other electronic devices rather than use standby mode. Electronic devices can create additional heat in the home.
  • Unplug items like cell phone chargers, DVD players, microwave ovens and other appliances. They still use energy even when turned off!
    • Tip: Plug electronics into power strips and turn off the power switch when the items are not in use.

The Low Income Home Energy Assistance Program (LIHEAP) helps keep families safe and healthy by assisting families with energy costs. Check in with LIHEAP about energy conservation and low income energy assistance programs. Often in the summer months, those with lower incomes, or individuals with disabilities are offered discounts on their energy bills to help keep their homes cool during the summer months. For information on applying for LIHEAP assistance, please contact your LIHEAP State or Territory agency.

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