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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Planning for a Doctor’s Visit When You Have MS

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Being prepared and asking questions may assist in the overall care you receive at your doctor’s appointment. Taking control of your medical care by finding your voice and advocating for your health will help you to feel more involved in your health care decisions.

Well before your appointment, get in the practice of writing down questions you wish to address with your doctor. A journal or binder can be used to keep track of these appointments. Sometimes it is helpful to have one binder for all medical professionals so that you can review notes from all appointments. Dividers or clips can help organize one doctor or specialist from the next. If questions come up for your primary care while you are visiting with the neurologist, you can add them to the section for the primary care.

Before the appointment, prioritize the questions that are more important at that time. Often appointment time is limited, so by prioritizing the questions, you will assure that what is most important to you at that time is what gets addressed.

It can be a challenge to manage the patient-doctor relationship, especially if your doctor is not used to you asking questions. You certainly do not want to come across as aggressive by demanding the doctor answer questions. Before the appointment, make the doctor aware that you would like to discuss some concerns. By being upfront with the doctor, he or she can make sure there is enough time. Some doctors may prefer to follow-up and discuss questions through a phone call or e-mail.

Asking questions is important but so is making sure you hear and understand the answers you get. Taking notes during an appointment can help to clarify things after you have left the office. Having a care partner or family member at the appointment may also help in remembering some of the details of what you heard. If writing is a challenge, perhaps try using a voice recorder (with the doctor’s permission) to help re-play what was said during the appointment.

If you are having trouble understanding or are confused, ask your doctor to explain again. Ending your appointments with a summary can help to ensure that the doctor hears that you have understood the directions or information provided to you.

If there is something you are not sure about, ask for more information. Many doctors’ offices provide brochures, or educational materials that can describe a treatment or symptom. If the office does not provide these things, ask where you may find them. Perhaps you can reach out to one of the MS organizations to learn more about a particular treatment or symptom, or ask for information to be mailed to you.

By taking a more active role in your health care planning and decisions, you may feel more positive about the control you have over the disease.

How do you plan for your trip to the doctor or specialist?

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MS Means Managing Your Energy

SherylBy: Sheryl Skutelsky

It’s Football Season! So, what does that have to do with MS? Well, in my case an unexpected wonderful opportunity to travel to meet my son to see my very first live NFL game. This opportunity truly once again brought to light the ways in which I have to live my life a bit differently from everyone else.

My dad wanted a boy, but instead he got me, an only child. So, I was placed in front of the television from as early as I can remember to watch the Jets play. I was taught every rule and regulation.

I’ve lived my entire life in New York, but for some reason my son had been a Packers fan from as early as I can remember. He dreamed of getting tickets to Lambeau Stadium for over 20 years. He finally had tickets for the Packer’s first home game against the Jets, but he broke up with the girl that was supposed to accompany him.

I get a call from my 31 year old son, now living in Houston, asking me if I would like to meet him in Green Bay for my birthday to finally get to see my Jets play live. Instantly I was ecstatic and panicked at the same time!

MS means managing your energy to avoid overwhelming fatigue. I didn’t have enough warning to rest all week for this trip. I also remember my son telling me that as a teenager he often felt that I wasn’t there for him; I was always too tired. I hadn’t been diagnosed yet, and my son rationally understands now why I was always tired, but I didn’t want to let him down this special weekend.

Well, the Packers beat the Jets, and I came home a Packers fan, but more importantly, my son and I had such a special weekend together. He had tattooed the MS logo on his ankle for me several years ago which meant a lot, but this weekend he also showed me that he truly understood how I had to live a little differently with MS.

My son did all the driving, took care of me, kept me out of the sun as much as possible, and made sure I got time to rest. We had such a great time together in Wisconsin, and my son told me how proud he is to tell people how his mom doesn’t let MS stop her from enjoying life. After all, what more can a mother ask for?

*Sheryl Skutelsky, diagnosed in 2001, has learned how to live positively with multiple sclerosis. Sheryl’s passion has always been graphic design. Her symptoms have become an inconvenience to her work, so she now uses her skills and creativity to reach out to others about MS. Sheryl is a patient advocate speaker for Biogen Idec. She also writes for Healthline.com, and she is an Internet radio host with her own show, Fix MS Now. Check out her Fix MS Now page on Facebook which has more than 10,000 followers. You can help raise MS awareness one “like” at a time by visiting: http://www.facebook.com/fixmsnow.

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The Impact of MS on Everyday life

Earlier this year, MultipleSclerosis.net conducted an on-line study called the MS in America Study (MSIA), which aimed to gather information from people who have been diagnosed with multiple sclerosis. The study was conducted with a goal of gaining a better understanding of the current status and trends in patients with MS. The survey covered a broad range of topics, including diagnosis, symptoms, treatment, and living with MS. A total of 6,202 people started the survey, of which 5,710 were eligible (diagnosed with MS, at least 18 years of age and were either US residents or US citizens living abroad); 5,004 completed the study.

One key area of interest in the MS community is the actual impact that this disease has on the everyday lives of patients and family members of those with MS. A section of the MSIA study asked participants a series of questions that focused on everyday life with MS, and the results are quite compelling. Of 5,514 respondents, the vast majority (77%, n=4,244) said that they are no longer able to do as much as they used to before having MS. Nearly half noted that they are unable to work (43.1%, n=2,374), and a similar percentage of respondents (44.8%, n=2,472) were receiving disability benefits.

The majority of survey participants reported having children (72.5%, n=4,028 of 5,554), and not surprisingly, of those, most felt that MS had impacted their relationship with their children in some way. Check out the pie chart below to see how MS has impacted participants’ relationships with their children:

MSIA children impact

When asked about their relationship status, most reported either being married (61.7%, n=3,417 of 5,541) or in a committed relationship (11.8%, 653 of 5,541). Interestingly, nearly half (46.1%, 1,872 of 4,063) of those who were in a relationship reported being in that relationship for 21 years or more. Similar to the impact of MS on relationships with their children, most participants felt that MS had an impact on their relationship with their spouse or significant other. Nearly half (43.5%, 1,767) reported that MS had “a little bit” of an impact, while 38.7% (n=576) responded either “quite a bit” or “a great deal.” Only 17.7% (n=721) of respondents felt that MS didn’t have any impact on their relationship. Interestingly, an analysis of these data showed that the length of the relationship did not correlate with the level of impact that MS had on that relationship.

Because MS can impact a person’s life in many ways, it is critical that patients have a strong support system in place to help them cope with this condition. MSIA participants were asked some questions related to their support networks, and the majority (58.7%, n=2,941 of 5013) reported having a loved one who is actively involved in managing their MS. Support networks include spouses, children, parents, friends, significant others, and other relatives.

Of the 2,941 people who responded to the question, “How does your caregiver help you manage your MS?,” the majority (74%, n=2,180) said that their caregivers help out during an exacerbation, while most said their caregivers help out with transportation to and from appointments, and many also receive help from their caregivers with managing their medication.

MSIA support system

Fortunately, in addition to loved ones, there are many other resources available to provide support for people with MS. Over 87% (4,267 of 4,881) of those in the MSIA study said that they rely on MS-specific websites to learn about or manage their MS, more than half (68.8%, n=3,357) read MS magazines/publications as a resource, and many (45.2%, n=2,204) also use social media outlets, like Facebook, for support.

Results of the MSIA study confirm that the impact of MS on the everyday lives of patients and loved ones is significant, and that there is great value in the support systems that are available. To read more about this study and to see additional results, click here.

Tell us more about how MS has changed your life! Who and what do you rely on for support?

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It’s beginning to look a lot like fall….

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Cooler temps forecast across parts of the country this week remind us that the fall season is approaching. Cooler nights, falling leaves and seasonal colors like orange and yellow are some of the trademarks of this festive time of year. Though some areas are still consumed by warm temperatures and strong sun rays, it is the time of year where the seasons start to evolve.

For those affected by the heat, fall is a welcomed time of the year that brings with it opportunities to enjoy the outdoors in a more comfortable manner. Sports activities, ball games, gardening and festive fall events are some ways to embrace the season’s change by spending time outside, and to perhaps ‘escape’ from hibernating methods used during the summer months when the unbearable heat was avoided.

Some look at the season change as a way to start new ventures, set new goals, or make plans for the rest of the year. New beginnings can create feelings of excitement and hope as new memories are made and added to those past. Though change can be difficult at times, it’s how you embrace it and make it work for you that matters. How the journey is spent experiencing something new is as important as the destination.

What are you looking forward to this fall?

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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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The Empowered Patient: Your Greatest Resource Lies Within

By: Jeri Burtchell

I remember feeling like I’d stepped through the looking glass that day in the hospital. My world became distorted and unreal as the words “you have multiple sclerosis” echoed in my brain. I couldn’t make sense of it; this couldn’t be happening. Suddenly my life as I knew it was over and I could either live in the past, or look to a new future.

It may have been over 15 years ago, but I haven’t forgotten that day. Anyone living with MS was once “newly diagnosed.” We’ve all been there.

So this month, in keeping with MSAA’s theme of finding resources, I’d like to introduce the newly diagnosed to what will become their greatest resource of all. It’s the mental approach we take toward living our best life despite MS. I’m talking about being an empowered patient.

The term “empowered patient” has no clear-cut definition, however it encompasses an overall set of characteristics that sets one apart from the average patient. Empowered patients take an active role in making health care decisions, learn all they can about their condition, compile resources, take notes, and strive to improve their own quality of life. There is no set way to accomplish this; each empowered patient discovers their own path.

For eight years after my diagnosis, I was anything but empowered. I felt helpless, overwhelmed, and despondent. My medication wasn’t working for me even though my doctor insisted it was. I had no idea I could get another opinion, and I trusted him when he said I needn’t try any other medicines.

Then one day my neurologist had a stroke. I was suddenly fighting my MS battle alone. That’s when my journey toward empowerment began. My first step was finding another doctor.

I’d never been very sick before MS, so doctor shopping was uncomfortable for me. I had my primary care doctor pick my new neurologist instead. (My path to empowerment began with baby steps.) It turned out the doctor he chose was the lead investigator for a clinical trial studying a pill for MS.

When I met with him we discussed the drug trial, weighing the risks and benefits. He also told me of all the other available options. Again I had to choose. I was terrified of making the wrong decision, and all of the medicines seemed so scary. But I was more afraid of not being on one of the drugs since my MS was so aggressive. I took home the paperwork to read up on the clinical trial. Three days later I took a huge leap. I decided to join.

Up until then I had been miserable, relapsing 3-4 times a year. Really big relapses that had me in a wheelchair, on a walker, or using two canes. The whole time I suffered, I never thought things could ever change. I thought I was destined to be miserable forever.

But the trial changed my life. I happened to get the real study drug and it worked so well for me, it would be another six years before I had a new relapse.

The positive outcome of my choices reinforced the importance of playing a more active role in my health care.

I learned all I could about my disease and took notes about what others found effective for treating the symptoms of MS. I questioned everything and sought to find the answers. As they say, knowledge is power.

But being an empowered patient isn’t just about making treatment decisions and getting second opinions, it’s also about owning your lifestyle choices, too. I took a long hard look at the things I could change. I gave up smoking and junk food and began exercising more. I saw real improvements. My goal is not just to live life, but to feel as good as I can at the same time.

But if giving your whole life a makeover seems like an impossible task, just take baby steps. Find one thing you can do that positively impacts your health and focus on it. If you need help, reach out for support.

Becoming an empowered patient doesn’t happen overnight. It’s a process that evolves over time.

So if you’re newly diagnosed and feeling overwhelmed, don’t despair. Know that there is an ebb and flow to relapsing MS and if you feel bad now, there are better times ahead. Focus on learning all you can and actively participate in your treatment decisions. If you don’t like your doctor, find another one. Don’t wait for them to have a stroke before you start thinking for yourself.

You’ll find that being your own advocate might be your greatest resource of all.

*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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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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You Know You Have MS When…

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People with MS tend to be very familiar with the typical symptoms associated with having this condition, like pain, fatigue, difficulties with mobility, numbness, tingling, bowel and bladder problems, among others. However, there’s so much more to having MS than what anyone could find in a textbook or a pamphlet at the doctor’s office. We wanted to know more about the everyday life of those with MS, so we asked our Facebook community to respond to the statement, “You know you have MS when____.” More than 150 people replied! Below is a summary of the feedback we received.

You just feel exhausted

  • After sleeping a full 8 hours, you still feel like someone used your body to run a marathon
  • The simple task of washing your hair is exhausting
  • Your kids think that all you do is sleep and that you’re sick all the time
  • You are so tired that you cry, and no amount of sleep helps
  • Everyone says, “You look tired – what did you do last night?” and you respond, “Nothing”
  • You’re too tired to get up, but you just end up lying around in bed thinking about what you should be doing
  • You wake up with a little bit of energy, bounce upstairs and fix breakfast, only to end up exhausted and needing a rest
  • You are tired or fatigued all the time, and you can’t find the energy to take a shower
  • Your battery depletes after 45 minutes of walking, and you become a complete physical mess on your feet
  • Feeling well-rested is a thing of the past
  • You must have a plan B, C, D, etc.
  • You need a nap before you go to the store to get coffee, and then need a nap again before you put it away
  • It takes HOURS to pay bills and organize your family calendar when, in the past, you were a successful nurse manager and an expert at multitasking

The weatherman is not your friend

  • Summer used to be your favorite time of year, but now sunlight, heat, and humidity keep you inside like a vampire
  • You’re the only one in the room saying, ‘Is it hot in here?’
  • When 70 degrees feels like you’re standing inside of an oven
  • When you can’t do any outdoor activities due to the heat
  • When summer heat hits the triple digits, and you can barely breathe
  • Your body is better at predicting the weather than the actual weather man

Getting around and maintaining control of your body is challenging

  • You can’t play with your kids or take a walk with your husband
  • You fall over when standing still
  • Your upper body starts to walk, and your legs don’t get the memo in time
  • You don’t even realize it when your legs go out from under you
  • You wonder if you’ll be able to climb the four stairs it takes to get into your office at work
  • You just tip over when standing still on level ground
  • When you wake up one morning, and you’re paralyzed on one side of your whole body
  • You keep tripping up over nothing
  • You are always dropping things
  • You are in the market shopping for groceries, and a fireman stops you because your face is drooping and you are confused, and they think you have had a stroke
  • Your hands are asleep and they don’t wake up
  • You are eating dinner and your arm suddenly jerks and your food goes flying across the table
  • You walk like you’ve had a few cocktails, but you haven’t had a sip
  • You find that no one around you realizes how hard you have to work to keep up, and you just end up getting left behind
  • You have to stop mid sentence because you’ve lost your train of thought
  • You take the dog for a walk around the block,and your legs feel like they are encased in cement
  • You walk like you are dancing to Michael Jackson’s “Thriller”
  • When your knees are locked as though there’s a magnet holding them together
  • When you go from 0 to pee in two seconds flat
  • You have to hold on to walls because you lack balance
  • You trip over something earlier in the day because of ‘drop foot’ and later that day you look at your scraped toes and wonder what happened
  • You decide being an unwitting participant in a wet t-shirt contest is better than running for cover during a surprise rain storm at an amusement park
  • You can’t stand without assistance
  • Your head goes one way and your legs another
  • You have to look at your hand and tell it to move
  • When you can’t pass a field sobriety test while sober
  • Despite only being 41, you walk like your 76 year-old mother
  • You have to lean your elbows against the shower wall to wash your hair

 Your mind isn’t as sharp as it used to be

  • You lose your train of thought while mid-sentence
  • You walk into a room and forgot why you went in there in the first place
  • You have the hardest time trying to say what you want to say, and your words come out making no sense
  • You describe your symptoms, and your neurologist looks at you as if you were speaking Greek
  • You get confused when there is too much going on around you; you can’t even place an order at a fast food restaurant
  • What was the question?

Pain and numbness become a part of everyday life

  • Your feet feel like they are on fire or you have frostbite
  • You are numb and tingly and have burning sensations all over
  • You get unexpected zaps of excruciating pain in your face, arm, leg, and you try not to scream
  • You are screaming from pain as what feels like loose electric wires whip out of control at the base of your spine
  • You feel like you are being stabbed, and you have a tingling feeling all over your body
  • You can’t feel your fingers, but you feel like you’re walking on rocks, barefoot
  • You feel continual electric shocks down one whole side of your body that are strong enough to make you gasp out loud
  • You “feel” noises that go straight to the bone with subsequent weird pain!
  • Your body feels like you got into a fight with Mike Tyson, then got run over by a semi, and then kicked to the side of the road
  • You feel like you are sitting in a wet bathing suit because your butt is numb

People assume that you are fine

  • When everyone assumes you are normal and they say, ‘Let’s go – get with it’
  • Your friends and family think you are fine because you look the same, so they think you are just being anti-social
  • You get angry hearing, “Gee, you can’t be feeling bad … you look too good”

Does any of this resonate with you? How would you complete the statement, “You know you have MS when ____”?

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