Air Travel Tips for the MS Community

By: Matt Cavallo

As the holidays approach, many of us living with a chronic illness are fretting holiday travel. Maybe you would like to travel to see friends or loved ones, but are hesitant because of your illness. You are not alone. Travel is stressful for everyone. Airports are big, busy and fast-paced. Security lines can be long and the thought of standing, unpacking, and repacking at TSA is enough to unravel even the most seasoned traveler. Compound traveling with the upcoming holiday lines and ticket prices and it may be enough for you to forego holiday travel and just stay home.

If you need to travel during the holidays and you are living with a chronic illness, there are several steps that you can take to ensure your airport experience doesn’t exacerbate your illness. The following steps will ensure that your holiday airport experience is as smooth as possible:

Five Steps to Stress-Free Air Travel for People Living with MS

1. Book your travel early. As a rule of thumb, booking your ticket fifty days in advance will get you favorable ticket prices, preferred seating (unless your airline has open seating like Southwest) and better flight time selections. Business travelers typically book fourteen days in advance, so if you wait to the last minute seating will be limited, as will flights, and the price will be higher.

2. Fly during off hours or off days. Much like morning traffic, the airport has rush hours too. My preference is to get the first flight of the day, even if it means being at the airport before the sun comes up. Airports are generally running once the sun goes up until the sun goes down. Whatever you do, avoid the last flight of the day, especially if you have a connection. If you are on the last flight, you have a greater likelihood of missing connections and then being rebooked on a flight the next morning. Mondays, Thursday nights and Friday mornings are business travel days. Sundays can be busy as well. Tuesday, Wednesday and Saturday are light traffic days and typically have cheaper flights.

3. Notify the ticketing agent or gate agent of your condition. If the airport and airline staff are aware of your illness, you can get wheelchair or transportation service (if necessary), medical clearance to get to the front of the TSA screening line and pre-boarding status at the airline. If you have trouble standing or waiting in line, be sure to tell the agents or TSA that you are a fall risk and have weight-bearing precautions making you a risk to stand in line for long periods of time. The number one goal at the airport is the safety of passengers and if you are a fall risk they will make every effort to prevent you from falling.

4. Limit carry-on luggage. Checking a bag is an extra cost (on most airlines), but that cost is well worth it. Check the TSA website for the items that they allow to get through screening. Make sure that if you have to pack liquids in your carry-on, they are a size that meets the TSA standard. They will confiscate any items that are prohibited for travel. Also, if you have limited strength or range-of-motion, it can be difficult lifting your carry-ons to the overhead storage.

5. Relax. The stress and anxiety of flying has many components that are out of your control. Stressing over the things you cannot control during air travel can be enough to make you sick and ruin your trip. If you follow the four preceding steps, you will be able to minimize most stressful airport situations. Unforeseen stressors like weather delays, mechanical failure and gate changes are situations that you cannot predict. If you can relax and take these steps into mind, knowing that whatever unforeseen delays are out of control, you will feel much better both during and after travel.

I fly a lot. Four out of my last six flights have had some kind of issue. I was delayed three hours on a one hour flight to Palm Springs. They loaded the plane, only to unload it and switch us over to a new plane after the delay.

Another time, I arrived in Detroit with plenty of time to make my connection to Akron, but there was no gate available. They said they notified the gate agents, but when I finally arrived at my transfer gate after a half hour delay, the gate agent had just shut the door. And even though four of us were standing there, she refused to open it or hold the plane per policy.

In this case, I didn’t take my own advice. I was on the last flight of the day and they couldn’t get me to Akron until 3:00 PM the following day. I had a speech in the morning, so I had to drive overnight and got to Akron at 4:15 AM. I was tired and groggy, but luckily able to caffeinate myself enough to give a great speech. Even though it worked out for me, the stress and delay were not worth going through that again.

As always, my advice comes from my mistakes. As a seasoned travel, I understand the do’s and don’ts of air travel. I hope that these steps help to make all of your air travel stress free. Safe travels!

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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Having a Stress-Free Holiday Season When You Have MS

By: Jeri Burtchell

Each year, I judge how well prepared I am for the holidays by the way Halloween plays out. When I saw my son donning the same scary mask we bought several years ago, I realized I’m as ill-prepared as ever. We’re lucky it still fits, I think to myself as holiday dread settles squarely on my shoulders.

The problem with his costume is not that we aren’t creative, it’s just that life is busy and time slips through our fingers like greased marbles these days. We end up making last minute plans and this Halloween was no exception: get the plastic pumpkin off the top of the fridge and start searching the house for that mask (two hours before Trick-or-Treat officially kicks off). I’m not creating the perfect childhood memories for my son, I fret to myself as I look under the bed for the face from Scream.

The limitations that my MS fatigue and reduced walking ability have placed on me are showing. I’m not looking forward to Thanksgiving and Christmas with the same enthusiasm as I once did. I’m filled with angst as part of me wants the ultimate “joyful” experience, while the other part just wants it all to be over.

But the holiday season is stressful for everyone. The difference is some people thrive on the stress, which they call “anticipation.” But others like myself are filled with dread. Ever since I was diagnosed with MS in 1999 it seems like I stopped looking forward to the time between Halloween and New Year’s Day. I think it’s because I worry about stress triggering a relapse. And then part of me feels guilty because the children in the family aren’t getting the full “magical” experience.

While I do face physical challenges, my MS isn’t the only factor shaping our family holidays. Mom is 91, and though she’s still undeniably the sharpest knife in the drawer, she doesn’t get around as easily as she once did. Still other family members are living with everything from lactose intolerance to diabetes which influences the dinner menu.

But we are managing. Together our family is learning to adjust to our new collective “normal”. We’re redefining what our get-togethers look like. The emphasis is on comfort and ease while downplaying commercialism. So what if the tree isn’t up or we don’t have a full turkey dinner with all the trimmings? We can define the celebration on our own terms.

The holiday dinners will be potluck so that we can each focus on one dish and prepare it ahead of time. Nobody will be banished to the kitchen and make-ahead dishes can be prepared when the cook (or baker) is feeling up to it.

With dinner prepared in advance, we’ll be free to enjoy each other’s company. The conversations, the laughs, the squealing children, and the photo ops will fill our memories of the day.

If Mom has to take a nap or I have to go lay down for a while, that’s okay. Everyone knows we both have our limits.

At Thanksgiving we’ll draw names for Christmas gift giving. Everyone ends up with a present but only shops for one person instead of ten. With a $20 limit and the convenience of online shopping, we can eliminate the stress of holiday crowds. We’re trying to make it more about the get-together and less about “what-did-I-get?”

Over the past fifteen years, I’ve come to learn a lot about managing my MS. I need plenty of rest, I need to eat right, and I need to exercise. But it’s just as important to reduce the stress in my life. Not only is it bad for MS, but for everyone’s health in general. By reducing the amount of effort (and stress) it takes to pull off a family gathering, we’re really looking out for our health.

The holidays should be about family, love, togetherness, and appreciation for every positive thing in our lives.

So when next year rolls around and my son is reaching for the same old scary mask at Halloween, I’m going to go a little easier on myself. The mask can be a new tradition, a symbol of how we can let go of society’s expectations. It will signal the start of a stress-free holiday season and–with the help of my family–I know we can do this!

References:
http://www.healthline.com/video/managing-multiple-sclerosis

*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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Planning for a Stress-Free Holiday

With Thanksgiving a little over a week away, many families have already started planning for the holiday season. Who is hosting, who’s making the turkey, and who will be opening their home to holiday guests this season? As if the actual day wasn’t hectic enough, with the shuffling around of foods, the constant chatter, and all of the hugs and kisses; why stress this upcoming week in preparation?

The following tips may help keep this holiday season a little less stressful:

1. Make a plan: Start by listing out each of the tasks that need to be accomplished. Breaking them down into groups can help keep things organized (i.e. cleaning, shopping, cooking).

2. Ask for help: Be prepared to delegate tasks to others. Go through the list and identify tasks that can easily be accomplished by someone else. Family and friends are usually asking, “What can we do or what can we bring?” Use this opportunity to check something off that list.

3. Practice self-care: Take breaks throughout the day; do not push through to finish a check list. Find a good mix of tasks that you enjoy with ones that are less pleasurable; when it comes down to choosing one or the other, always choose the one that makes you happy.

In what ways do you plan for a stress-free holiday?

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Some Extra Holiday Help

There is no doubt that the holidays are rapidly approaching these days, especially with cooler temps across the country and decorations filling the stores as continuous reminders. While this time of year translates into joy and cheer for most, for some individuals this may represent a time when some extra help is needed to make the holiday special. Financial difficulties can make expectations of the holidays a struggle, but it’s important to know that there are resources available that may help support your holiday activities, and therefore lift some of the stress that can accompany these festivities. The following community resources may offer help through the holidays:

  • Salvation Army offices offer seasonal services and holiday assistance programs to help families in need with holiday dinners, toys, and clothing. Search for your local office to inquire about direct programs and services and application time frames.
  • The United Way can offer information and referrals for holiday assistance programs in your community.
  • Contact the county department of family/social services in your area, as their office may have additional holiday assistance and resources available.
  • The Toys for Tots Program provides new, unwrapped toys during the holidays to children in need through community outreach and support efforts.
  • Local religious organizations may offer seasonal assistance as well, though these programs can vary based on location. Contact the groups directly to inquire of services available.

Many community assistance programs have specific application deadlines and requirements in order to receive holiday assistance by a certain time. Be sure to reach out to the resources to see what’s available in your area and how to apply. Some extra holiday help can go a long way!

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Reviewing Financial Statements – Taking an Active Role in Reducing Debt

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How often do you take the time to review your bill statement before you write the check or pay the bill? Not too often, right? As we discuss money management and how to create a budget this month, one important issue must be addressed. As with all things in life, mistakes can happen, and credit card, cable, and medical billing companies are not immune to mistakes.

When a statement or bill comes through the mail, take some time to read through the charges to assure that no added fees have occurred or no changes to the bill have been made. If you are receiving certain credits on your bill, make sure those are being taken off appropriately. Also, make sure that the full payment was received and taken off of the total balance due. If there is something on a statement that you are not sure of, make a call to a company to discuss the charge. Many companies are quick to admit a mistake and will immediately reverse the charge.

Sometimes a phone call to a company can provide additional savings as well; perhaps there is a promotional deal available or a program that you can qualify for to assist with lowering the payment. Making a phone call and taking an active stance towards managing your bills proves to the company that you are in good faith trying to reduce the debt.

What steps have you taken to have a more active role in reducing your debt?

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Managing on a Budget

rsz_distressed_couple_with_calculator_and_paperworkCreating and trying to maintain a financial budget for monthly expenses can be difficult at  times. Some people have to adhere to a strict budget due to their financial circumstances, so maintaining a budget is especially important to ensure needs and responsibilities are  met each month. Making a budget that makes sense to you and can somewhat ease financial concerns can hopefully support your monthly financial planning needs.

Here are some suggestions of what to consider when creating/maintaining a budget, and where to find help:

  • Create a budget that is practical for you to track. Make computer spreadsheets,
    and file or record expenses on paper. Find an accessible way to track expenses that works for you.
  • Make a list of monthly expenses and income resources to identify how much money is coming in and how much needs to go out towards expenses.
  • Keep a record of spending and estimates of monthly bills to identify areas that can be modified, if any, to keep finances on track.
  • Reach out to financial management/budget counseling resources in your area for additional guidance and support. These agencies, sponsored under the U.S. Department of Housing and Urban Development Administration, offer services to help manage finances and provide additional housing and financial counseling services as well.

Budgeting finances can be difficult but necessary for many individuals. Ensuring financial needs are met can be stressful so it is important to reach out for support when needed and find a system that works for your needs. What are some ideas you have to help create a budget?

 

 

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Accessible Voting

You may or may not know it, but Tuesday November 4th is the day to vote. That’s right – midterm elections are here, and for many people that means they get a chance to make a decision about the makeup of Congress or governorship in their state.

But what do you do if you arrive to your designated voting site and the building isn’t accessible, or there are other problems which would cause you difficulties in casting your vote?

Go to the voting place prepared. You don’t want to be stuck – physically or metaphorically – at the voting site and not be able to cast your vote.

Here are a few tips to make sure your vote is counted:

  • Make sure you are registered to vote. There may be a specific time frame you must register in advance of a vote, so if you miss out this year, go ahead and register so you can vote in future elections.
  • If you are not sure, confirm your voting location with your city or county government office. You can also call ahead to ask information about where to park, whether there is accessible transportation, etc.
  • Get the phone number for your State Office of Protection and Advocacy and bring it with you when you vote. If you run into any barriers (lack of accessible transportation, physical accessibility of the building, problems accessing voting equipment, or understanding your rights), this is the correct office to advise you of your rights under the ADA and make sure you get a chance to vote.

Why go through the hassle of going to the voting booth at all?

  • Many states allow individuals to register as an absentee voter. Once you get registered, you can remotely cast your vote! For next time, plan ahead and register to absentee vote.
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Nutrition and Multiple Sclerosis

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As we wrap up this month focusing on reaching out to supportive professionals, there is one other group of professionals that plays an important role in the overall health of individuals with MS. One of the top questions asked in regards to MS care is around the idea of a diet for MS, or which foods to avoid for individuals with MS. Unfortunately, this is a difficult question to answer as there has been no hard science that indicates that any particular food groups are specifically beneficial or not to those with MS.

With MS being a very individualized disease, meaning that it affects each person in a different way, it is difficult to say that one thing will work for everyone.

Just as MS is a very individualized disease, understanding and creating a nutritional plan must be individualized as well. Meeting with a dietitian or a nutritionist may help to better understand the foods and nutrients that your body needs in order to work properly. By working with a professional, he or she can help to safely monitor the changes occurring in your body based on the foods that you add or withdraw, depending on your plan.

Talk to your doctor about a referral to a dietitian or nutritionist in your area. You may also wish to reach out to your insurance provider to learn about insurance coverage for these visits. Licensing and education can vary between those in the nutritional field, it is important to do some research on the professional and their background and beliefs about nutrition. Some nutritionists may have a belief in herbal supplements and other forms of natural healing while others may not. Knowing what you are comfortable with in regards to your treatment and matching that with the appropriate practitioner can aid in the overall process of crafting a healthy regimen for you.

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MS in America – The Use of Oral Therapies for the Treatment of MS

In our September article we shared some of the key findings from The MS in America Study (MSIA), highlighting some of the ways that multiple sclerosis (MS) impacts the everyday lives of those with this condition. In addition to collecting information about the impact of MS, we also asked people with MS to tell us about their treatment, including what they’ve tried, if they were satisfied, and what they are currently taking for their MS. Because oral therapies are relatively new to the treatment armamentarium, we decided to take a closer look at the use of oral therapies for MS in our community.

As one would expect, infusions, interferons, and other injectables are still used by a majority of MS patients. However, results from MSIA, which was completed by more than 5,000 eligible respondents, demonstrated that oral medications for MS are used by nearly one third of patients who have relapsing-remitting MS (RRMS), and more than 50% of people using injectables are considering switching to an oral medication!

We asked all survey participants how long they have been on their current therapy, and as one would expect, those who were taking oral medication for RRMS reported being on that treatment for a shorter period of time than those who were on other treatments (like injectables or infusion).

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Interestingly, the vast majority (80%) of people who had ever taken an oral therapy for MS reported that they were still taking an oral MS treatment.

We also asked participants several questions about switching therapies. Most of those who reported switching from injectables noted that they did so due to needle fatigue and/or issues of tolerability. Other reasons included seeking better efficacy, convenience, safety, and cost, among others.

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Many MSIA participants who had not recently taken an MS treatment reported that they had started anew with an oral medication due to a variety of reasons, including dislike of needles, and disease progression, among others.

Finally, of the MSIA respondents who were still taking injectables to treat their RRMS, nearly half (48%) said they have considered switching to an oral therapy. While much remains unknown about the long-term use of oral therapies for MS, it is clear that oral medications for MS play a critical role in how this condition is treated. For more results from the MSIA special report on oral treatments for MS, click here.

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Stopping Mental Health Stigma

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When you have an infection, you call the doctor. When you have a toothache, you call the dentist. But why when you notice a change in your emotional wellbeing don’t you call a counselor? The mental health stigma (or the view of individuals who seek mental health counselling in a negative way) can have a strong enough effect to stop someone from picking up the phone for help. The idea that an individual is perceived in a negative manner just for the use of mental health services sometimes prevents an individual from seeking care.

In the same ways that the doctor helps cure your infection, or the dentist helps fill your cavity, a counselor or therapist can help guide you through the emotional challenge you may be experiencing. However, fear surrounding the thought of being judged or criticized holds strong enough in some individuals that they will not seek out care.

1 in 5 Americans live with a mental disorder such as depression, bipolar, or anxiety disorder according to the National Alliance on Mental Illness and two-thirds of those diagnosed do not seek treatment. Fears of disclosure or discrimination are some examples of why one would not receive care. Helping to stop mental health stigma opens the doors to mental health treatment and care for those who truly need the support.

Tips for Stopping Mental Health Stigma:

1. Educate those around you about mental health.
Example: With MS, the rate of depression is three times higher than the general population.

2. Use positive language surrounding mental health illnesses
Example: Use phrases such as “a person with depression”; correct people who use inappropriate terms to describe a person.

3. Speak up if you feel you have been discriminated against based on a mental health condition!
Example: People with mental illnesses can experience discrimination in the workplace, education, housing, and healthcare.

Please share your tips or suggestions on ways to stop mental health stigma. By sharing the voices of those in need, we move closer to a world where those who need help no longer fear reaching out.

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