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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Insurance Enrollment and the MS Community

While the 2014 year slowly comes to an end and individuals start to make their end of year plans, there are still two important dates to keep in mind in regards to open enrollment for health insurance. For those who are uninsured, or who possibly want to make some changes to a pre-existing Medicare plan, open enrollment allows individuals to make changes without penalty.

Medicare open enrollment ends Sunday, December 7th. Up until this date, changes can be made allowing an individual to switch from Original Medicare to a Medicare Advantage Plan, or vice versa. A switch from one Medicare Advantage Plan to another Medicare Advantage Plan or to a plan that offers different drug coverage can be made as well. This is especially important to the MS community as medications can often change. If the doctor prescribes a medication that is not covered under a drug formulary, other drug coverage options can be explored that may be more suited to your prescription needs. To explore options, contact Medicare directly at (800) 633-4227 or visit www.medicare.gov.

For more complex issues with Medicare, the Medicare Rights Center offers a helpline to answer your questions about insurance choices as well as Medicare rights and protections. You can reach the Medicare Rights Center at 1-800-333-4114 or visit www.medicarerights.org.

The Open Enrollment Period for individuals eligible to enroll in the Marketplace for a Qualified Health Plan for coverage starting in 2015 is now through February 15, 2015. Individuals can enroll in a plan in the Marketplace by visiting www.healthcare.gov, or by calling (800) 318-2596. These plans are available to those who are uninsured, losing insurance, or who would like to make a change to their existing plan. If you purchased a plan in the previous Open Enrollment period and were not happy with that plan, now is the time to review other options and make a switch if available.

For more information regarding insurance, MSAA’s My Health Insurance Guide is aimed at assisting the MS community with understanding the many details surrounding today’s health insurance options.

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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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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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What is an Occupational Therapist?

In the field of medicine there are many specialties that often work together to provide a comprehensive approach to patient care. For those dealing with MS, these specialties can oftentimes blend together, as the symptoms of the disease warrant concurrent methods of treatment. Trying to understand and recognize the responsibilities every specialist has in a patient’s care can be challenging, and in the rehabilitative treatment domain, the role of occupational therapy may be lesser known than other forms of therapy.

Occupational therapy (OT) focuses on treatments used to rehabilitate activities of daily living for individuals with physical, mental or developmental conditions. Working to develop and improve the skills needed to maintain day-to-day living and work habits are the goals of this therapy, with the client being at the forefront of treatment. Things like bathing, eating, dressing, job performance, driving and financial management are some of the areas of focus OT can impact with intervention. OTs work closely with the client, and many times with the family also to create an environment that’s conducive to the client’s needs; this can include the home, workplace, school, or other settings. Making changes that help modify particular tasks and teaching new skills helps clients regain control over their daily functioning and aids in maintaining their independence.

OTs help to create personalized interventions and treatment plans to help clients achieve personal goals of what they ultimately want to perform in their daily routine. Education is a major component of OT, as therapists and clients alike work together to learn what activities need modifying and how these changes can happen. The OT specialty often works in conjunction with other treatment specialists including physical, speech, and language therapists, in addition to other healthcare and social work professionals to develop an inclusive plan for client care.

If you are experiencing challenges with daily living and work activities, ask your doctor about OT to see if an evaluation is appropriate for you. Your doctor may be able to provide further information about this therapy and if it could benefit your needs. For additional information about occupational therapy, visit The American Occupational Therapy Association, Inc.

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I have MS – Can I Still Get a Flu Vaccine?

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Colorful foliage, the scent of pumpkin spice, football games…Ah, there are so many things to love about the cooler weather! Unfortunately, the approaching flu season is not one of them. Around this time of year and throughout the fall and winter seasons, we often encounter individuals with multiple sclerosis who wonder if they can still protect themselves from the influenza virus by getting a vaccine.

In most cases, “yes,” although anyone considering a flu shot should check with his or her doctor in advance. Also, if you have MS, you should first consider the following points before getting a flu vaccine:

Make sure you are getting the injected type of vaccine: Flu vaccines usually come in two forms – injected and intranasal. Because the intranasal variety contains a live rather than inactive virus, it is not recommended for people with MS. If considering a vaccine containing a live virus, please consult your doctor.

Consider whether you are currently having a relapse: People experiencing an MS relapse are often advised to wait a period of time before receiving a vaccine. Talk to your doctor to find out if this waiting period applies to you.

Talk to your physician first: Whether or not you are currently experiencing MS symptoms, it’s always important to consult with your physician before getting a vaccine. Discussing your plan with your doctor will ensure you are getting the right vaccination at the right time for you.

Want to learn more about MS and vaccinations? This information was adapted from MSAA’s July 2013 article, “Vaccine Safety and MS,” which was written by Susan Wells Courtney and reviewed by Jack Burks, MD, MSAA’s Chief Medical Officer.

No one wants to miss out on the fun of fall and winter because of the flu. But having MS doesn’t mean you can’t help protect yourself against influenza. For more information on preventing the flu, you can also read, “Angel’s Tips for the MS Community on Getting Prepared for Winter.”

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Assistive Technology for Individuals with MS

Over the course of years living with a disease such as MS, there may come a time when more assistance is needed to complete daily activities. Perhaps typing on the computer is becoming a challenge due to spasticity, or driving a vehicle has become difficult because of numbness in the leg. While it may not always be conducive to ask another person for help, perhaps a piece of equipment can aid in getting the task done more effectively. Assistive technology, or AT, is any item, piece of equipment, or software that is used to increase or improve the functional abilities of individuals with disabilities at school, work, home, and in the community.

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Assistive technology devices can assist those who may have difficulty with speech, typing, writing, cognition, walking, etc. In each state, a State Assistive Technology Project is available to provide information on assistive  technology and consultation about the type of technology piece that may be helpful. A borrowing program may also be available where the devices can be borrowed for up to a certain period of time to see if the device will be effective. Information about available loans to help with more expensive devices can be discussed as well.

In trying to determine the type of device that may be helpful for a specific need, working with a rehabilitation professional such as a physical or occupational therapist might help to clarify the type of device that would provide the best assistance. They can make specific recommendations of devices that can assist with a variety of needs and may also help with checking whether insurance will cover the item recommended.

What assistive devices have you used? What avenue did you take to receive the device?

 

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Disclosing MS at Work – Community Experience

Since MSAA first partnered with the MultipleSclerosis.net staff, we have consistently been impressed with their willingness to share in our mission of improving lives today. We are pleased to have them as a regular contributor to our blog MS Conversations.

The majority of people who have MS are diagnosed when they are between 20 and 50 years of age. Because this coincides with the time when a person is most likely to be a part of the work force, people who have MS often have to consider their condition when making work-related decisions. Upon receiving an MS diagnosis, one of the biggest decisions they make may be whether or not to share this information with their employer and/or colleagues. While some people choose to be private when it comes to their MS, others may decide to be an “open book.” One of our patient advocates shared his experience about telling his employer and colleagues about his MS, and many of our community members shared their stories in response. We also asked our Facebook community members to share their experiences with us, and as you can see, people have very different stories to tell.

I’m hesitant to tell my employer and colleagues about my MS

  • Sometimes I will say I have a ‘neurological condition’ but I don’t go beyond that.
  • My experience is that most employers don’t want to hire a person with a condition that will increase insurance premiums. I would never tell an employer or future employer I have MS.
  • I think if I disclose my MS at work, I might lose my job. I can’t even work from home one day when I don’t feel well. I’m expected to be alert, healthy, and on top of my game. I feel like no one cares. As much as people can be compassionate, it is only to a degree. I need to be present, and I’m expected to perform. So, I play my role and I smile through pain and tears and I do my job. I don’t have much choice.

I had to make adjustments due to my MS

  • I had to disclose my MS because it could have become a safety issue at work, so my responsibilities needed to be adjusted accordingly.
  • I could no longer be productive and I became a danger to the public and myself. My employer knew before I did that I was having trouble. I drove an 18-wheel truck and set up POS networks. I just could not do the work anymore. Some of my employer’s family members had MS. The truth is I loved my work I had to come to grips with the fact that I just could not do it anymore. It’s important to be truthful to yourself about your capabilities at your job and then make a decision.
  • I had to go part-time instead of full-time three years after being diagnosed because of my symptoms and a number of relapses. However, I’m still trying to “stick it out” and remain employed because I find it quite fulfilling; if I don’t work, I get bored way too easily.

I wish I hadn’t said anything

  • Despite it being a private matter, even with HIPAA laws, word spread fast about my diagnosis at my work and people immediately started treating me differently.
  • When I told my employer, his response was dismissive, as if to say, “and what do you want me to do?”
  • My employer lacks compassion. Unfortunately, a few of my coworkers went out of their way to make it even more difficult for me.
  • I was essentially forced to leave, and I was then denied long-term disability benefits through my employer. Thankfully, I hired an attorney and eventually won.
  • I lost my job when my employer found out.
  • I lost my job of many years shortly after I was diagnosed in the 90s. Of course, they didn’t say my illness was the reason behind losing my job, but it was obvious to me. It was heartbreaking to lose a loved career after working so hard for so long.
  • I shared during my original interview to explain why I had balance issues. When a full-time position later became available, I applied and was told that they would not award me the position due to my MS. My boss said that if I became unable to work, they’d have no one to cover the additional hours. Although I sort of understood, it was blatant discrimination, and I reported it. My boss lied, saying she had never said that. I am still working there, as it is a job that I love with hours I am capable of handling.

Sharing my MS diagnosis was a positive experience

  • My boss is understanding, even though I can’t do everything I used to do.
  • My employer and coworkers have been very kind and understanding. It’s actually harder for me to tell people about my MS on dates than it was when I told my employer.
  • I’m glad I came “out.” My coworkers are very respectful, and I found out my boss’ wife also has MS.
  • Had I not told my employer what was going on, I would have missed out on being connected with the best MS specialist in my area. My boss happens to have connections who were able to get me in with my doctor, who was not accepting new patients at the time. Telling my employer was the best thing I ever did! Also, it is my personality to be very open, so it was never even a question in my mind. I do realize though, that in other positions, it might not have been the same situation, and I might have kept it under wraps if I knew it might mean keeping my job or not.

It’s important to note that there are employment discrimination laws in place in the US to protect you, particularly through the Americans with Disabilities Act (ADA). A legal resource such as the State Office of Protection and Advocacy, The Job Accommodation Network, or the Equal Employment Opportunity Commission (EEOC) may also be able to assist in helping an individual to determine what rights they have regarding disclosure, workplace accommodations, and/ or determining whether discrimination may have occurred after a disclosure is made. It is unfortunate that some people have had negative experiences when sharing their MS story with employers and/or colleagues. One can hope that this will improve over time, especially with an increasing awareness of MS.

Have you told your employer that you have MS? What was your experience? What advice would you give someone with MS (or any other chronic condition) regarding disclosing this information?

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