Summer Travel Tips for Flying With MS – Part 2

Posted on July 31, 2013 by MSAA

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.

Summer Travel Tips for Flying With MS: Part 1

Posted on July 29, 2013 by MSAA

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.

Running on Empty

Posted on July 26, 2013 by MSAA

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: https://mymsaa.org/about-ms/symptoms/fatigue/.

What is a Pseudoexacerbation?

Posted on July 24, 2013 by Angel Blair

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, https://mymsaa.org/publications/understanding-treating-relapses.

Tips for Staying Cool and Conserving Energy

Posted on July 10, 2013 by Samantha Schech

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.

Staying Active with MS

Posted on June 28, 2013 by Ashley

Usually when we hear “stay active” people are referring to some sort of exercise. But, that’s not what I’m implying when I say it, I like to keep my mind active.

And I don’t mean keep your mind active by stressing about what’s going on in your life or how your MS is affecting you that particular day. I mean, test your brain. Play some games online that really make you think; get a crossword puzzle book; or you can play games on Facebook, like I do!

However, if it’s one of those days where you just don’t even want to think too hard, because your head just can’t handle it, get lost in a book! That’s my favorite thing to do! I don’t sit there and worry about what’s going on in my life when I get lost in reading a book that I can really get into.

I can’t even describe how time goes by when I’m doing these things and how I don’t worry about how I’m doing with my MS, or anything else going on in my life. My brain is being active, but not to the point where it’s stressful, it’s relaxing. Something I really enjoy that we do at MSWorld.org is every Friday Night at 8pm ET, we play “Trivia.” One of the chat hosts puts together an hours worth of trivia, and the whole chat room plays. It’s nothing that is a “competition” or makes you think too hard, it’s really fun and gets you thinking!

Of course, it’s always good to stay physically active with MS… that’s a given, but I like to have a workout session with my brain more often than physical workouts! Needless to say, the only physical workout I can endure with out “over doing” or hurting myself is swimming. And I’m not just talking about hurting myself from doing too much, but I have made a fool of myself at the gym because I’m a walking accident!

So since it’s Summer time, take this time to enjoy and get your brain working, but in a fun way!

Preparing for a Doctor’s Visit

Posted on June 24, 2013 by Ashley

Okay, so we all go to doctor’s appointments… and we have to get there early, in order to fill out paper work… and while we’re filling our paper work in the doctor’s office waiting room, we have to try and ‘remember’ everything that we need to write down for the doctor.

So I’m going to share some things that I do, in order to prepare for a doctor’s visit… without forgetting information that needs to be shared.

For starters, I keep a journal. In my journal I keep note of any changes in how I’m feeling or how I’m reacting to medication. It’s also very handy, when I need to write down a question I want to ask my neurologist, and if I don’t write it down right then… I’m going to forget, even if I tell myself that I won’t.

Something I always have on me when I leave the house, (as well as at home saved on my computer), is a medication list. This way, if something was to happen and I have to go to the ER or anything like that, my medication list is always with me.

I can also say that I would be completely lost, if I didn’t program alarms on my phone for upcoming appointments, and to even take my medications! Yeah it’s annoying, but I don’t forget!

Having a list of my medications as well as my journal of how I’m feeling and how I’m doing on medications, etc., really helps when I go to see my neurologist. It also cuts down time that I have to fill out paperwork, which can sometimes be troublesome as I also have issues with Upper Limb Spasticity (in my hands) mainly in the summer months, so it’s not always “easy” to fill out paperwork.

One of the benefits from keeping things written down in my journal is that, my neurologist can see what triggered me not feeling better… like I stated earlier, my spasticity gets worse when it’s hotter outside, so I know what has caused the increase in my spasticity. (Mind you, I live in Central Texas, and it’s almost always hot here… so let’s just say “hotter”… like today’s “Real Feel” is 102 Degrees Fahrenheit.)

Now, I don’t carry around a small notebook with me anymore, but I do use my phone to keep notes on how I’m doing. You have to enjoy and embrace technology these days, as the famous saying goes … “There’s an APP for that.” (MSAA does have a mobile phone app, My MS Manager, which offers a journaling feature) It’s all true.

One last tip, if you’re the type of person to forget things easily, like I am see if your doctor would mind if you brought a voice recorder to your appointment. This will allow you to play back the visit and conversation to yourself when you’re at home. This is especially helpful if your doctor answered some of the important questions you had been waiting to ask.

National Fruits and Veggies Month

Posted on June 19, 2013 by Samantha Schech

June is National Fruits and Vegetable month. While we should be eating fruits and vegetables every month out of the year, June is merely welcoming back the garden-fresh produce that we’ve missed all winter long. The biggest part of eating right for summer is listening to what your body tells you about what it wants to eat. As you approach these summer months, do it with fruits and vegetables in your belly and in your fridge. Stock up on vegetables rich in color. Maybe have a bowl of fruit for a snack instead of chips. Encourage your friends and family to join you in your venture towards a healthier lifestyle!

Cantaloupe, watermelon and tomatoes are great fruits to help you stay hydrated. Great summer vegetables include summer squash, sugar snap peas, corn, bell peppers and onions. Eggplant, zucchini and green beans make a great source of dietary fiber.

–Broccoli is a nutritional powerhouse: It is full of vitamin C, calcium, fiber, and vitamin A.
–Carrots are a good source of fiber, which helps to maintain bowel health, and aid in weight maintenance.
–Watermelon, which is especially terrific this time of year, offers a juicy, sweet taste and high water content, while packing in antioxidants, vitamin C, and potassium.
–Grapes aid in the maintenance of healthy blood pressure. Eating the whole fruit instead of consuming the juice contains the added benefit of fiber.

Tips for your wallet: Fresh produce is more affordable when it is in season. Also, look for weekly specials on fresh, frozen, canned, and dried fruits and veggies. At a restaurant, always ask what vegetables, including salads, are available as substitutes.

What fruits and veggies will you be adding to your diet this June?

watermelon

Work, work, work…

Posted on June 17, 2013 by Angel Blair

In today’s world, work tends to be one of the main focal points of everyday conversation. What work you do, how long you’ve been doing it, and what work you hope to do in the future become areas of focus. Therefore it can be difficult when some of these conversation starters touch on a subject that’s a little less defined for some people, especially those having challenges in a job position due to a disability.

Employment concerns and issues can arise for all individuals within the workforce, and when you throw a disease like multiple sclerosis into the mix these issues can cause frustration and confusion. Some individuals have difficulties deciding which work arena would be most appropriate for their skill set and abilities, while others question how long they will be able to continue the work they are currently doing. These are all relevant and important questions to consider, as many find themselves faced with these thoughts. What’s important to know is that work issues are something you can discuss with others so you are not faced with these questions alone. Your doctor, healthcare and social work professionals, family, friends and other resources may be able to assist in this process.

There are also other outlets of information and resources where one can possibly find assistance with employment issues. A Vocational Rehabilitation office is a resource throughout each state that is designed to assist those with disabilities on information and resources regarding employment changes. There is also a resource called the Job Accommodation Network, www.askjan.org that can offer information regarding workplace accommodations which can create greater accessibility to those with disabilities in the workplace. If you’re experiencing workplace issues you’re welcome to call the MSAA Helpline at phone (800) 532-7667, ext. 154 or email us at msquestions@mymsaa.org. Again, though employment issues can be challenging and create many difficult questions, there are potential resources to help you along the way.

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