The Invisibility of MS

Posted on June 29, 2016 by MultipleSclerosis.net

Living with MS can be a daily challenge, even if other people can’t physically see the struggle. The invisibility of MS symptoms can be one of the hardest and most frustrating aspects of living with this condition, so when we shared some of the data about this subject from our most recent MS in America survey, many members of our MS community told us about their thoughts and experiences. Here is what they had to say:

The top issue faced, especially now that it’s summer? Trouble with the heat and the way it impacts your body:

My activity is restricted by the heat. Especially today when the temperature will be in the 90’s.
I would rate the intolerance to humidity at the top.
My speech gets slurry and my balance is off. I get accused of being drunk.
The heat makes my head swim and consequently, my balance gets really bad.
I have been feeling more and more fatigue due to my body temperature going from freezing to hot. Each time that occurs, I have less energy, less motivation to do something.
Summers are the hardest for me!!! The last two weeks have been increased fatigue, less energy, pain, and brain fog! Most people love summer! I used to, but now it’s the time I struggle the most.
Severe fatigue & the heat in Alabama are really bothering me!

Fatigue: it’s a huge (and invisible) concern for many:

Fatigue especially. It’s like the first trimester [of pregnancy] fatigue times 100!
I have fatigue every single day. It’s hard for my husband to understand that it’s every day. I have maybe 5 times a year that I feel like a normal person.
Yep, and the lack of sleep because of spasms equals more fatigue.
It’s hard for others to understand how you can be so tired doing everyday things. After doing a load of laundry, going grocery shopping and making dinner I am exhausted!

And some other symptoms that can’t be seen but definitely make life more challenging:

Don’t forget the bladder and bowel problems.
It’s the periodic blindness that sucks for me.
And the headaches are brutal.
Mood swings are really challenging..
The tingling symptoms scare me. I’ve had a couple of really bad relapses and I’m always afraid I won’t feel my body again.
Pain needs to be one for me – it’s about 99%.
My issues seem to be centered around fatigue, weakness, blurry vision and weird cognitive stuff like memory issues or not being able to think of words, or using the wrong word.
My wife, family and friends will never truly understand what it is like to have headaches and other symptoms on a frequent occurrence and why and how it affects my mood, energy levels and potential plans in a day.

Do these responses ring true for you? What invisible symptoms do you struggle with?

The Best Part of Summer – Barbecues!

Posted on June 27, 2016 by Melissa Young

Summer is finally here! Unfortunately, in most parts of the country, that also means the heat is here too. This can obviously put a damper on the season. But there are many positive, enjoyable things about the summer time. Family vacations. Travel. Baseball games. The 4^th of July. Fireworks. And barbecues!

For me, barbecues are the best part of the summer. Whether I am entertaining or attending as a guest, I really enjoy spending time with family and friends in a relaxed setting. Plus, barbecues can be enjoyed in many ways. My husband and his friends man the grill. The kids play in the pool, play wiffle ball, and create their own games. My mom sits in the shade with her friends and they talk about the “good old days”. As host, it’s my duty to make sure everyone is comfortable and well fed.

In that spirit, here is a recipe for one of my favorite barbecue side dishes: Deviled Eggs!

Easy Deviled Eggs

6 hard-boiled eggs
salt and pepper
2 tablespoons mayonnaise
1 tablespoon yellow mustard
2 tablespoons dill pickle relish (you can also use sweet pickle relish)
paprika

Directions

Peel shells off of the hard boiled eggs and slice in half (lengthwise).
Using a spoon, gently remove the yolks from the whites and place all the yolks in a small bowl. Mash the yolks into small pieces. Add the mayonnaise, mustard, and relish to the yolks and mix until well combined and creamy. Fill the empty egg white shells with yolk mixture and sprinkle with paprika.

What is your favorite food to serve or bring to a barbecue or picnic?

How the My MS Manager App Helps Manage MS

Posted on June 24, 2016 by MSAA

In 2014, MSAA partnered with app developers @Point of Care to update the My MS Manager mobile app – making it a much better tool to not only help you manage day-to-day life with MS but to also help facilitate shared decision making between you and your doctor.

More than 7,000 people affected by multiple sclerosis currently use the app to record and track their specific MS disease-related information, such as daily activities, fatigue scale records, medications, and other relevant information. The app organizes this data into useful charts and reports that can easily be shared with your doctor and healthcare team.

Earlier this year, @Point of Care and MSAA surveyed users of the app to see how they were using it and if it was effective in helping manage their MS. This data was presented earlier this month at the 2016 Consortium of Multiple Sclerosis Center (CMSC).

Results from the survey of more than 1,300 active monthly users showed: Capture

77% utilize the app daily or weekly

80% state the app helps them track how well they are doing

78% reported that regular use of the app improved their ability to discus and manage their MS

70% have a sense of improved well-being as a result of using the app

75% reported better management of their fatigue by using the app

73% discuss and share their app records with their doctor to improve MS management

86% reported they are motivated to discuss management of their MS with their doctors as a result of using the app

For more information and to download the My MS Manager app for free, please visit mymsaa.org/mobile.

Staying Connected, Staying Sane: Social Media & MS

Posted on June 22, 2016 by MSAA

By Jeri Burtchell

I’ve never been very outgoing. In my younger days, I was the one off in the corner at the party quietly taking it all in. Casual conversation terrified me.

So it should come as no surprise that, in real life, I only have a handful of friends and most of them are relatives. But when I was diagnosed with MS in 1999, my microscopic social world seemed to get even smaller. I’d never really taken into account that George, who faithfully bags my groceries, or Shirley, who has cut my hair for years, were friends, too.

During my first MS attack my legs became weak and totally numb. I was suddenly unable to drive. My car – and the mundane socialization of everyday interactions – came to a complete standstill. That’s when I realized how much I depended on the Georges and Shirleys of the world to keep me connected.

When I was first diagnosed, I was trying to care for my infant son while grappling with symptoms that made every diaper change seem like an Olympic event. The combination of raging MS and motherhood left me physically and emotionally exhausted. I kept that to myself most of the time, not wanting to burden my family and friends for fear of driving them away. I didn’t realize at the time just how toxic fear and loneliness can be.

It wasn’t until I got a computer and the blazing speed of dial up internet that my world opened up. The gray clouds had parted and the rays of friendship – or at least camaraderie – were beaming in. I found people online I could relate to. Others with MS who understood exactly what I was going through both physically and mentally because of this disease. I had only ever met one person with my condition prior to passing through this portal to a whole new world.

That was back when online forums and chat rooms were about as social as it got. But I learned a lot about my disease from the internet, and even more about symptom management and treatment options from others like myself. People in search of friendship and a way out of the isolation that chronic illness so often imposes on people.

Then came Facebook and Twitter, two platforms that have exploded in popularity, giving us access to the world and each other in real time. Empowering people living with chronic illness to find each other and share information, experiences, and photos of our cats. Facebook groups are where I go to learn the latest news of cutting-edge science in MS. Hashtags on Twitter give me an easy way to join conversations about health activism or to follow my passion – raising awareness about the importance of clinical trials.

It was through one hashtag, #whyclinicaltrialsmatter, that I met my new friend Janelle, who lives in Australia. Despite a 14 hour time difference, we Skype on Sundays now, brainstorming how together we might make an impact on the world.

If MS is the worst thing that has happened to me, the internet and social media have been among the best. My computer has enabled me to travel the world from my living room, learning, growing, and making new friends. Social media was the conduit, turning me from a frightened and lonely introvert into a health activist championing for change. I’m not saying that’s how it would – or should – work for everyone. Social media is a tool. With it, you can build whatever connections you like that fulfill you and add to your happiness and wellbeing.

I may not be close to everyone I know through Facebook or Twitter, but they all bring value to my life. They enrich me, they educate me, and they shine light into dark places when I begin to feel like my world is closing in. So while my small circle of family and friends in real life are my go-to connections, I appreciate what the Georges and Shirleys of this world mean to my social health. And I cherish my online friends who are never out of reach. They’re always just an app away.

*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.

Things To Consider When Searching for the Right MS Treatment

Posted on June 20, 2016 by MSAA

There are many important factors to consider when having conversations with your doctor about your treatment options. The treatment decision for each person is unique and must be addressed individually between you and your healthcare team. Additionally, it’s important to recognize the need to prioritize your issues, questions, and concerns in order to maximize the time with your healthcare team. With so much information to remember, organize, and prioritize, MSAA recognized the need to help frame these important discussions. By doing so, MSAA is able to support patients and their physicians in their S.E.A.R.C.H.™ for the most appropriate therapy for each individual.

Designed as a memory aid, the S.E.A.R.C.H. acronym represents the key areas that should be considered when “searching” for the most appropriate MS treatment. Each letter represents an important topic that must be considered by patients, physicians, and other healthcare and social service professionals. S.E.A.R.C.H. stands for:

MSAA has produced a variety of informational tools to help people maximize their success with S.E.A.R.C.H.™. Current S.E.A.R.C.H.™ tools available for download include:

The S.E.A.R.C.H. program overview booklet, “How to S.E.A.R.C.H. for the Right MS Therapy for You!”
An informative webinar and accompanying PowerPoint presentation
The S.E.A.R.C.H. Patient Workbook – A convenient way to collect, organize, and store information as you “search” for the most effective treatment to meet your needs. The Workbook also features an office visit questionnaire to help prioritize questions and maximize your time with the doctor.
A comprehensive chart of all 14 disease-modifying therapies for MS currently approved by the FDA, and more!

For more information about the S.E.A.R.C.H. program and to receive any of these resource items, please visit the S.E.A.R.C.H. for Treatment Options page on our website.

The Social Butterfly

Posted on June 17, 2016 by MSAA

By Lauren Kovacs

Staying social is a huge obstacle for many people with MS. Even before MS, I was more of a wallflower than a butterfly. Now, I struggle with my inner hermit. I think I might be allergic to people.

Like a butterfly that has two wings for balance, so does a social life with MS. Balance is key to our safe and an even flight into the world. We cannot fly with one wing.

Socializing outside can inject heat into your plans. Just as you pack for a beach trip, pack your MS bag. Be prepared for anything. Good thing my sons are Boy Scouts. Being prepared is their theme.

Planning ahead makes for a smoother flight. Look at the temperature and the humidity level. Know where and how close bathrooms are. For me, heat boils my guts. Bubble, bubble toil and tummy trouble is my summer cheer.

Stay cool however you can if you are outside. Jumping into lake water might be your only option. In my case, flopping off the edge of the boat or being thrown in is my method. Air conditioning is best. Don’t suffer in silence. Butterflies are silent creatures, but let people know when you are too warm.

You need to know your limits. Boating above 80 degrees with high humidity is not an option for me. The lure of delicious KFC chicken and a good time are not enough for me to risk turning into a wet noodle with tummy issues.

Be a social butterfly when you can, on your terms. Butterflies are cold blooded and like the heat. However, like there are thousands of different butterfly species, heat effects us all differently. A wet rag slurring his or her words is no fun to be around. You don’t want to be a hermit, but socialize smart.

If my feet are cool, I feel better. Investing in several pairs of sport/water sandals is a must, for me. If I am neat water, my feet are in it. I always make sure to get a fabulous pedicure. Painting my own toes is just ugly.

It is a struggle to be social in summer. Be a butterfly when it is cooler. Sitting around a fire pit at night toasting marshmallows can be just as fun as boating with friends. Slap on some bug spray and enjoy the night. Butterflies are sleeping, but the owls are out.

MSAA Joins Spasticity Alliance

Posted on June 15, 2016 by MSAA

Spasticity, which is an involuntary tightness or stiffness of the muscles, is one of the most common symptoms of multiple sclerosis (MS), affecting approximately 80 percent of those living with the disease. Among other issues, it can be painful and limit movement. Like many MS symptoms, spasticity can have a negative impact on a person’s quality of life.

To increase education surrounding this symptom and treatment strategies, the Multiple Sclerosis Association of America (MSAA) is proud to announce that we have joined with the National Stroke Association, United Spinal Association, United Cerebral Palsy, and the Brain Injury Association of America to form the Spasticity Alliance, found at www.spasticityalliance.org. Together, our goal is to raise awareness about spasticity and help people living with spasticity resume normal daily activities.

This site, launching in conjunction with Spasticity Awareness Week (June 13-19), features a variety of educational resources, multimedia tools, and personal stories of those with different health conditions living with spasticity. The Spasticity Alliance hopes to empower individuals and their family members through these valuable tools, along with offering effective management options.

Social Benefits

Posted on June 13, 2016 by Angel Blair

Sometimes it’s really difficult to maintain relationships and stay social with others around you. This can be due to a number of reasons and factors. Life in general creates enough hurdles and curveballs that prevent us from staying engaged and interacting with others, at times it’s simply because things get in the way. Having a chronic illness like MS can certainly make staying connected even more challenging as the disease comes with its own agenda and unpredictability. But it’s important to try to stay socially linked to people and support networks around you, because it can be beneficial in more ways than one.

It’s understandable if there are times when you don’t want to reach out to others and engage in social interactions, it happens to everyone. There are moments where we just want to be alone and process things on our own. However, making ties and maintaining relationships can create added benefits to one’s life. Positive connections can help to boost your mood and attitude, especially when surrounding yourself with encouraging and optimistic people. Staying social can create a sense of cohesiveness and camaraderie with others. These bonds may form even stronger if the same types of values, goals and experiences are shared—or if they are not, there is infinite respect in the relationship to appreciate these differences.

Having a chronic illness can sometimes cause feelings of isolation and separation for those affected—a feeling of being alone in what’s happening because others do not know or understand the condition. That’s when connecting to others who have similar backgrounds or experiences can help. Sharing the same types of feelings, thoughts and hopes with others increases a sense of belonging and validation in knowing you’re not alone in your experiences. Social engagement can help decrease stress levels and keep your mind active which can also aid in improving your overall health. And it doesn’t matter what type of social activity you’re engaged in; whether it’s taking a walk or ride, going out to an event, talking on the phone or attending a group, what matters is the connections you’re making and the positive benefits they have on your well-being.

Maintaining a Social Life Despite MS

Posted on June 10, 2016 by MSAA

By Meagan Freeman

Sometimes, I avoid social contact because I fear that I might need a helping hand from my friends due to my MS issues, whether that might be a simple door being held open, or help with bags. This need for assistance keeps me from interacting at times, and I realize that I may not be alone in my feelings. This fear of dependence might keep us from enjoying our friends and family, and this is not something we should ever allow. I detest feeling dependent on others, especially my close friends and family. In fact, one of the first thoughts I had after my MS diagnosis was: “I refuse to be someone’s burden!”

There are little things that happen each day, my inability to open a jar, my inability to drive at night, my fatigue in the afternoons. Then, there are larger issues such as my ability to earn a living the way I used to, the missed children’s football and soccer games due to heat and flares, and the emotional impact this is having on my husband and children. How do you cope with this loss of independence? It is almost inevitable that this diagnosis goes hand in hand with increased dependence on others.

The MS patients I have met in the last few years are just like me. Have you noticed that? Most of us are very strong, stubborn, independent individuals who feel just as I do. I find myself feeling guilty every time I have to ask for help. Apparently, this is my life lesson, my challenge, my big obstacle to overcome.

As I examine my motivations and feelings more closely, I realize that a lot of these feelings are purely my ego. I gain self-esteem from being independent, and I always have. I have had a constant little voice in my mind throughout my life asking “would I be okay if I lost everyone I know?” My answer was always a resounding: YES! However, now I realize that this was not a healthy mindset. Now, I have much to lose.

In the past, I mistakenly saw my lack of dependence as strength. I thought that because I had nothing to lose, I was untouchable emotionally. No one could ever hurt me if I did not care that much. I needed nothing from anyone, and I liked it that way. Boy, was I wrong.

We need to feel supported by others. It is a basic human need.

The question then, is: How do we do this? How do we accept our small (or large) losses of independence? My answer is that our loss may actually be our gain.

When we ask for help we:

1. Show that we are trusting of another human being.
2. Show that we are in need at the moment, but not forever.
3. Develop a bond with another human being.
4. Form the foundation of a long, connected relationship.
5. Create an opportunity to help someone else in the near future.

How great would that feel? To know without a doubt that your friend/spouse/caregiver/family member will always be there for you, no matter what? This is what I gain when when I lose. I may need a hand opening my next jar, but I have a lifelong bond with my spouse that is strengthened each time I need a hand.

Do not mistake needing help for weakness, or independence for strength. Strength comes from building a strong relationship with those closest to you. This is where our true strength lies. Socializing is an important part of our lives, and MS should never stand in the way of enjoying activities with those we love.

*Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

Who’s in Your Social Network?

Posted on June 8, 2016 by Ro Washington

It’s beginning to look a lot like Summer. Rising temperatures have engulfed many parts of the country as we head into three months off for many schools and time marked by vacations, day trips and outings around town. One of the things often associated with summer are the get-togethers with friends and family, cookouts and time to connect. After the long chill of winter and rains of spring, being social and connecting with others can breathe new life into our daily routines. But being social can also be difficult to manage and navigate. Where to start and what to do to put yourself out there are some questions that you may ask as you venture into being social. Here are some helpful things to keep in mind this time of year as you look for ways to put yourself out there.

Set a goal: This summer I want to make one new interaction a week. Goals are important, they keep us accountable and give us something to aspire to. Make sure your goals are reasonable, obtainable and of interest to you.
Reach out to volunteer: Volunteering is a great way to meet new people, discover a new interest and also give back to the community around you. There are sites such as Volunteer Match as well as your local community center than can help you get started.
Plan something you’ve wanted to do: Maybe you’ve been saying you want to have people over or get together with a friend who you haven’t seen in a while. Now’s the time to reach out and put something in the books.
Give the internet a try: Now I know the internet is pretty much part of all our lives and one of the reasons is it’s ability to provide us with new and fun ways to interact. Join a new online community such as MeetUp.com where you will be able to find local opportunities to join others interested in board games, cooking classes, paint nights and any number of activities.
Give yourself a break: Doing new things and getting out there to meet new people or even planning things with those you know can be a lot, but it doesn’t have to be overwhelming. Give yourself a break if your goal is to make one new interaction this summer or you have to reschedule that dinner with friends. What’s important is that you are seeking the engagement and building new connections.

Staying social is great to our overall well-being. It gives us outlets, keeps us connected and provides other individuals that we can reach out to in times of need. This summer add some points of contact to your social network.

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