Who’s in Your Social Network?

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.discuss
  • 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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Making Relationships a Priority When I’m Tired and Everything is Important

By Stacie Prada

I didn’t worry about needing to consider my social life as it related to my health before I was diagnosed with MS.  The downside was I also pushed myself beyond my limits and consequently averaged two exacerbations per year. Unknowingly I was adding stress to my body and accelerating my MS disease activity.

Spending time with friends and going on adventures were something I believed I should be able to do, and I didn’t see fatigue as a symptom of something larger and more serious. I still believe I should be able to spend time with friends and experience adventures, but I now weigh and budget the energy it takes with the joy I’ll experience.

The Harvard Study of Adult Development tracked men for 75 years (and counting) and showed that people with good quality relationships with family, friends and community are not just happier than people without good relationships, they are also physically healthier. They experience less memory loss, pain doesn’t affect their mood as much, and they’re generally more resilient.

As such, I see my relationships as imperative to my future health.  Investing time in my social relationships is not optional.  MS symptoms like fatigue can make it more difficult to build and maintain those social connections.  When work, bills, housekeeping and everyday tasks take more energy than a person has, it’s easy to turn down invitations to social gatherings and become isolated.

Rethinking beliefs:

I grew up believing that school came first and only after you get all your work done can you get the reward of playing with friends. As an adult with a chronic condition that affects my energy level, I’ve learned that this approach feels like constant punishment. It also neglects the human need to have more in life than work. I’ll never have enough energy to do enough of the good stuff I want to do after all the work is done.  To compensate, I pace myself on things I need to do, reduce the effort it takes to do them, and save enough energy for the good stuff in life. Among the good things are spending time connecting with other people.

I’ve heard the saying that to be rich, a person can make more or want less. I translate that as to be more energetic, I can make more energy or use less energy. I can do things that recharge my energy level, and I can conserve my energy by reducing the effort it takes to do things.

I boost my energy by exercising, eating nutritious food, being organized, pacing myself and resting. I’ll conserve my energy by streamlining, prioritizing, and delaying or delegating tasks. Doing these things allows me to feel confident that I’m doing the best I can, and it allows me to feel justified in placing a high priority on fun and relationships.

Prioritize Joy and Relationships:

A terrific method to maximize joy with limited energy is to double up on the benefits by combining things that need to be done with social interaction. I’ll go for a walk with a friend to combine exercise, social engagement, time outside getting fresh air, and time not eating or doing other things I should limit.

If I need to do some shopping, I might go with a friend who can drive and help me find what I need. I make sure to allow time to rest before, during, and after the excursion. It often changes the experience from one that can be draining to one that is invigorating and recharging.

I’ll reduce the effort it takes to participate in social events.  I’ll shorten the length of time I’ll stay, but I’ll still show up. Sometimes I choose events that are easier to do and less physically taxing.  Other times I’ll choose events that may require a lot of energy but are rewarding and worth the effort.  If I love it, I make sure I streamline and reduce other activities so that I can have enough energy to do the one that’s a big deal.

The level of effort it takes to engage socially vastly ranges. I can choose how I want to connect at any time based on my level of energy and the relationship I want to maintain:

  • Text
  • Write an email
  • Write a letter or send a card
  • Call them on the phone
  • Skype
  • Meet for coffee, lunch or dinner
  • Go to a movie together
  • Exercise with a buddy: Go for a walk, hike, bike ride, swim, etc.
  • Go to an event: Attend a concert, museum, or dance
  • Plan an adventure
  • Take a trip, visit family, explore new places with someone

It also helps to explain to the people in your life how MS might limit your activities and that you’ll do your best to stay connected. While talking on the phone with my sister one night, we were having a very engaging and fun conversation when I hit the metaphorical wall.  I interrupted her, “I’m sorry, but I need to go now so I can go do nothing.”  We laughed at the time, and I still crack up that I could say that to her without being rude and without her feelings getting hurt.  It’s important and empowering to recognize when to push myself to be socially engaged and when to quit while I’m ahead.

biking break cropped

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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June 2016 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

MSAA is very proud to present our 2016-17 Art Showcase – celebrating the work of artists affected by MS.

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the new submissions.

June Artist of the Month:
Elana K. Rosen – Cincinnati, OH
Lunchtime Dining
Elana K. Rosen - Lunchtime Dining

About the Artist:
“My name is Elana K. Rosen and I have always drawn and painted. I was diagnosed with MS in my thirties. Occasionally I have a hand tremor. When this happens my art is looser and I cannot paint detail. Painting makes me happy and helps me feel a sense of accomplishment.”
Read more

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Staying Social with MS

By Matt Cavallo

Many of you who follow this blog may have noticed that I haven’t posted here in a while. That is due in large part to a massive MS relapse I suffered in March and April. The relapse rendered me non-functional on my right side. I developed drop foot and could barely walk. My face drooped on the right side and I couldn’t squeeze my lips tight enough to drink without dribbling or even swish water while brushing my teeth. Most devastating is that my right arm and hand were completely numb. I couldn’t lift it or feel any sensation other than pins and needles. I also couldn’t pick anything up with my right hand and couldn’t grab a pen, keys or even type.

April and May were spent mostly in recovery, waiting for my functionality to return.  As a result, I wasn’t writing. Writing wasn’t the only thing I was avoiding. I didn’t want my friends to see me while I was in a relapse and recovery mode. I started isolating myself to anyone outside of my house. I missed events at school for my kids and major events like a good friend’s baby shower. (Actually, I briefly attended that one but quickly left due to embarrassment when I dropped a plate of food in the buffet line due to my numb hand). This also took a toll on social interactions at work. I travel quite extensively and all of a sudden I was asked to stay home instead. While it was for the better, it still changed the dynamics of those relationships.

Deep down I knew avoiding everyone wasn’t healthy, but I also didn’t want anyone to see me in my current state. I have spent so much of my life and professional career showing people how well I am managing my MS and to have this severe a relapse really was damaging to the way I felt about myself. While my wife was a rock, I could see that my condition was taking a toll on my two young boys, age 6 and 8. I couldn’t participate in their activities and they had to watch their dad go receive home infusions and struggle with mobility. All of a sudden, I found myself in the throes of depression. I knew I had to take action, but I didn’t know where to start.

The first thing I did was talk to my neurologist. Since I was having a major relapse, my neurologist was seeing me every two weeks to monitor my recovery. I disclosed to him some of the concerns I was having at home, at work and with friends and he suggested that I talk to a psychologist. While I thought it was a good idea, I decided to manage my depression on my own. This was a personal decision, if you are going through something similar, please reach out to someone who could help.

I decided to have a talk with my boss. He completely understood and supported me in my recovery. He appreciated that I was being open and honest with him. He reiterated that I was a valuable member of the team and that my health was the most important thing. He made changes to my schedule to accommodate my disability.

Next, I started having discussions with my friends. I reached out to some close friends to meet me for dinner. I explained everything I was going through and they were very sympathetic. Like my boss, they wanted me to know that they valued me as a person and that my MS was a part of who I was and that it didn’t change the way they thought about me at all.

Finally, I had a talk with my kids. I explained in the best way I could what was going on with my relapse and recovery. They hugged me and told me that despite what I was going through, that I was the best dad in the world. My wife has been my rock through this and I couldn’t have started my social outreach if it hadn’t been for her support and understanding.

Some of you may have a hard time staying social with MS. Maybe you are withdrawing from your family, friends and work, like I was. I just want to let you know that you are not alone. Being diagnosed with MS, losing functionality, dealing with devastating fatigue is a lot for a person to handle. To further complicate it, the people closest to you may not understand what you are going through. Everyone deals with MS in a different way. I just want to let you know that if you are feeling isolated or depressed, there are people out there that can help.

If you are feeling the same way, here are some tips that can help:

  • Talk to your neurologist, or other doctor, about how you are feeling.
  • Tell your friends, family and coworkers what you are experiencing. Even if they don’t completely understand they will want to be involved in your life.
  • Attend a support group meeting, MS webinar or social media MS group. There are opportunities to network with other people living with MS like you and sometimes it is nice to have a conversation with someone who understands.
  • Don’t overdo it. When I first decided to reengage socially, I pushed myself to the limit and wound up being really fatigued. If you set expectations and don’t overdo it, everyone will understand.

This last relapse was a tough one. It made me pull away from the people and the things that I love. I stayed isolated and depressed for a while. I decided to talk to my doctor, friends, coworkers and family about how I was feeling and together, we got through it. If you are having trouble with MS, staying social just might be the support you need.

*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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Celebrating Memorial Day

Memorial Day is considered by many as the official start of the summer season. Some of you may be celebrating by going to a cookout with friends and family. Some of you may be heading to the beach to enjoy the sun. And some may just spend the day relaxing. No matter how you enjoy your holiday, it’s important to reflect on and remember what the day represents. Memorial Day is a time to remember those who have served in the US military; those who fought for our country and dedicated their lives to keeping us safe.

On this day of remembrance, MSAA honors all of the men and women who served this country so courageously.

Please note that MSAA’s offices will closed on Monday, May 30th, in observance of Memorial Day. 

Have a safe and enjoyable weekend!

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What You Wish They Knew About Your MS

Many people have heard the words “multiple sclerosis” before, and probably know it’s a chronic condition, but so many do not know what it really means to have MS. We asked our community at MultipleSclerosis.net “What’s one thing you wish more people understood about MS” and the responses were phenomenal. Below you’ll read real experiences from people just like you that start to paint a picture of what MS is really like. These are the things people should be aware of; this is how we spread true MS awareness!

I’m Not Drunk!

  • My memory is not always good! My husband and children understand and are patient, but people who don’t know look at you like you are drunk or high
  • She’s not drunk. She doesn’t even drink. It’s the MS that makes her off balance sometimes
  • I am not drunk, I am not dumb, I am not lazy – I have MS
  • Don’t tell me I seem drunk when I trip – It’s not funny

I Miss My Active Lifestyle, Too

  • If only others understood how we miss our active life before MS. It’s bad enough that we often feel like a burden, being treated as one is pretty much the worst feeling
  • Sometimes I feel depressed not being able to do what I used to be able to do – others just don’t get it
  • People always knew me as being active, and now they never see me. I just wish they would come by sometimes. All I need is to know someone out there cares

When I Say I’m Tired, I’m Tired

  • When I say that I have to go home early because I am tired, I am really tired. It´s not because I am lazy, it´s not because I am bored or boring, it’s because I am tired!!
  • When I say I’m tired, I’m not being lazy. And when I say my body hurts, Aspirin will not help
  • I wish they understood that my tired is not like their tired, and my pain is not like their pain
  • Just because I look healthy does not mean I am and when I say I am tired and need to sit down, it’s not a joke! 

Every Day, Every Minute, Is Different

  • I wish they understood that every moment is different. I can be good one minute and not the next
  • I wish people understood that my mind and body change every moment of every day
  • One minute I could be fine, but then next I’m not. I put on a brave face, but don’t assume I’m “fine”
  • Don’t ask me how I am if you don’t really want to know

How about you? Do you ever feel misunderstood? What do you wish more people understood about life with MS? Share this article and your own stories and experiences to spread the word about what it really means to live with multiple sclerosis!

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The 2016 MS Research Update Available Now From MSAA

The 2016 edition of MSAA’s MS Research Update provides a comprehensive overview of research findings on many experimental drugs currently under investigation for the long-term treatment of multiple sclerosis. Also included are new clinical trial data on some of the currently approved disease-modifying therapies, as well as directions for future research in areas such as stem-cell research, biomarkers, genetic studies, and gut microbiota.

Research Update 2016

In addition to the exciting research aimed at relapsing forms of MS, several studies are also looking into the treatment of progressive forms of MS. To assist individuals interested in learning more, trials with progressive forms of MS have been highlighted in bold for quick identification.

This year’s MS Research Update has been published jointly by the Multiple Sclerosis Association of America (MSAA), the Consortium of Multiple Sclerosis Centers (CMSC), and the International Organization of MS Nurses (IOMSN). MSAA greatly appreciates the support from the CMSC and IOMSN to assist with the production of this publication.

Read MSAA’s latest MS Research Update here

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Note to Self: What I Would Tell the Newly Diagnosed Me About MS

By Jeri Burtchell

Driving along a rural stretch of two lane highway in north Florida, the sun beamed down in the most cheerful way. I pulled off the road and parked in a spot with woods on either side. I got out of the car and sat on the hood, burying my face in my hands. The cheerful chirping of the birds contrasted sharply with my deep, mournful sobs.

I’d just come from my Second Opinion where a doctor had smiled at me, saying, “Yep! You definitely have MS,” before heading out the door to casually change the next life down the hall forever.

So here I was, alone in the woods on a gorgeous day. How could nature be so happy when I was so devastated?

After a good cry I got in the car and headed home to share the news with my family, and try to wrap my brain around the idea of “forever”.

Being newly diagnosed – especially in 1999 when the internet and social media weren’t even on my radar – was a very scary and lonely time.

Drawing by Jeri Burtchell

It’s been going on two decades since that day, and if I could go back in time and send a letter by carrier pigeon to the woman sitting on that car hood, here is what it would say:

Dear Newly Diagnosed Me,

I know you’re terrified, but trust me, I’ve learned a lot since then. You’re sitting here crying now, but so much will happen in the next 17 years you wouldn’t believe me if I told you. I don’t have time to explain, but I’ve written these tips to help you get through. You have to trust me on this…

You won’t have to do shots forever. At that time there were only 4 therapies (all shots) to choose from. I was terrified of needles and often skipped shots because of it.

Take charge of your health. There were many things I changed gradually after diagnosis—I quit smoking, started eating better and getting more rest. It made a difference in how I felt.

Don’t let one bad day—or month—keep you down. It’s hard to believe things will get better when you’re in the middle of an MS relapse. Hang in there, though.

Build your own medical team. My newly diagnosed self didn’t know that there are MS “specialists” who know more than a regular neurologist. I also didn’t know to stand up for myself and ask questions. On the advice of my first neurologist, I stayed on a therapy for 8 years that wasn’t working for me. When I finally decided to switch doctors, that’s when I learned about other options and found something that keeps my MS in check. So pick your medical team. Choose your specialists and your primary care doctor based on how well they communicate, how open they are to helping you explore your options, and how much you trust them. Never feel afraid to question them or get second opinions.

Explore your options. Besides the available treatments and therapies, find out about cutting edge research. There is so much going on right now in MS research there might be an opportunity to help bring a new breakthrough drug or device to market – and you’ll be among the first to benefit. Talk to your doctor or learn more on sites like MSAA.

Discover others and network. Not only does misery love company, but you can learn so much by finding others who “get it”. No need explaining how exhausted you are by fatigue, or what that crazy zapping feeling is when you bend your neck. There are people out there who know exactly what you’re going through. Network with them to learn about MS, to find out what MS clinics or doctors are awesome, tricks for getting symptom relief and more. Search Facebook for groups to join or find others by doing a Google search of multiple sclerosis support groups.

There’s no need to feel alone. There’s no reason to let fear of the unknown take over. Get involved, learn all you can, meet others, volunteer, and just keep plugging away at living the best life you can. Things will get better. I promise.

Love,

Your Future Self

Oh yeah, PS: Don’t wait so long to cut your hair. You really look a lot better now. 🙂

*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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Dear Newly Diagnosed

By Lisa Scroggins

This should have been easy for me to write. My topic is coping with getting a diagnosis of MS (multiple sclerosis). Mine occurred quite a while ago, and that is why I believe it’s been somewhat difficult to write about. Not from lack of memory, nor lack of interest. So much has changed since I received a diagnosis, that at first, I thought, there are treatments now – not so when I was diagnosed. There is so much information available on the internet now, yet when I was desperate for information, that now well-traveled virtual highway was known only to a handful of adventurous folks; that is, not to you and me. I was limited to what I could find at my local library, which was paltry, at best.

Then it came to me: the same technology that has made instant communication possible, that has transformed the world, truly, is not all lollipops and gumdrops. If I were speaking to someone newly diagnosed, I think one of the first things I would say is that he/she should tread lightly in cyberspace.

Over the past few years, I have participated in a few Facebook groups organized by people with MS. I didn’t participate in some of them for long, however. It’s pretty astonishing how many people seem to use Facebook as their “go to,” for lots of things. Apparently, a fair number of MS patients fall into this group. If the information found were always correct and/or helpful, this might not be so bad. But as some of you reading this have learned, some of the information found via social media and the internet is undoubtedly anything but accurate or helpful. It’s true, just as in the bad old days, that misinformation and the “awfulizing” of MS still live large.

More important than being wary of social media or things that friends and acquaintances might say to you about this recalcitrant disease, do not take as medical gospel much of what you read on the internet. Not only do you have to consider the source, you also have to realize that MS is just as unique as is your very own fingerprint. No two people have the exact same symptoms, nor do they have the same disease course. In my experience, well-known websites staffed by bona fide medical people generally give a, well, general description of MS. There are still so many unknowns about MS that despite as many as 13 FDA-approved therapies for MS, scientists still seem to struggle with which people should get this drug, and who should get that drug. Efforts are underway to figure out how to personalize the drugs (and not only for MS), but that strategy is in its infancy.

Sadly, there are still some neurologists out there who either have a hopeless attitude about MS, or their bedside manner is atrocious. Both can be devastating for you, dear newly diagnosed person. I started to write “dear newly diagnosed YOUNG person,” but since in the past 10 years or so, I’ve known quite a few people who were diagnosed in their 40s or 50s, and even one man who was past 60 years of age when diagnosed, to assume that all newbies to the helter-skelter world of MS are young would be a grave mistake. I am nothing more than a layperson with no special medical training, and yet, my strongest advice to those just setting out on this journey would be that you must be your own advocate. I know! That’s not what you feel like hearing, and you may even resent me for saying it. But trust me, nobody cares more about what happens to you and your body than you do.

As you seek information about MS, you will come upon some that is heart-breaking. You will probably see and hear about people who have had a miserable course. I remember when I tried to avoid those people. It wasn’t because I thought it was contagious, but it was because I didn’t want to hear them as they railed against the unfairness that is at the heart of MS. I must hasten to add that even though I said I avoided “those people,” that isn’t an accurate assessment of what happened. I knew one woman in the first year after I was diagnosed, who was the leader of an MS support group for the newly diagnosed, and she used a scooter. She was such a kind person, a real leader in all the meaning of that word, that I don’t believe any of us looked at her in the scooter and ran for the hills. She offered resources when she could, but she listened, she sympathized, she even shared a couple of times when she cried. But she ultimately was there for us, and we knew it. Nobody else could have understood so well what the deepest fears of every one of us were. Other groups in which I’ve participated consisted mostly of a lot of complaining about the difficulties of having MS, and those, my friends, are legion. You may already have experienced some of those. If so, then right now, please do whatever you have to, to keep your sanity. I remember soon after getting the diagnosis, my family and I were on a cross-country trip, and we were about to enter a long tunnel. I had a sudden thought and was terrified that when we came out of the tunnel, I might be blind. That didn’t happen. As far as I know, nobody has something that happens THAT rapidly. Take a deep breath. You don’t have to get everything figured out today, or tomorrow, or next week.

One more point about finding information about MS on the internet. Along with great strides in therapies for MS, there have been many that fall in the realm of CAM, or complementary, alternative and integrative health measures you may try. In this area you may find some relief. You also may find some very strident people who insist that you must never eat X, or always eat Y, or maybe if you do THIS, but stop doing THAT, you will be cured. Read, research, try to vet the proponent of the ideas you consider. Talk to your doctor about it. There are those who stand to profit from banking on your fears. The truth is, that at this very point in your life when you likely are feeling the most vulnerable ever, you will be called to muster up your best intelligence-gathering efforts, and your ability to discern what makes sense and seems likely to benefit you. You can rise to this challenge. And you will probably be called to do so again and again. A better way of describing what you need to do is to be ever vigilant, ever on the quest, but always remain hopeful.

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The Monster’s Identity Revealed

By Lauren Kovacs

I was only 16 and the MS monster tried out its first attack. Optic Neuritis was the flavor it chose for nine months. At the age of 21, the monster awoke again. Numb from the neck down and several bewildered university sports medicine doctors pushed me to seek help from another doctor.

The doctor told me it was a stroke, gave me muscle relaxers, and sent me back to campus. Being a pretty smart college student, I knew muscle relaxers and a stroke were not the answers.

I went and saw our old neighbor, also a family doctor. I was directed back to the neurologist from my optic neuritis days. I was not sure how my eyeball related to my numb legs.

After tests, he said it was MS. The monster had revealed its identity. He said not to research it. I was only 21 and I was not going to research it?

The university library became my new home. Because you could not see it, many of my teammates accused me of faking it to miss our long practices. I sat day after day watching my team practice for UCA Nationals without me. Still confused, I just kept reading books about MS. The internet was still new.

Now, I read anything and everything MS related. I read about alternative therapies. I visit blogs. Prayer is also still a big shield.

I write down new drugs I am taking. I keep track of side effects. I write down how new medicine makes me feel. I take charge of the MS. I am the boss.

I had to change doctors because, after five years on one treatment, it was the only way for me to change medicines. Another one, I swear, made me feel like I was making it up. You are in charge. After five neurologists, I finally found a great one. She works with me instead of feeling like I was sent to the principal’s office.

Wheelchairs, walkers, and leg braces are part of me. The internet has been the new library. I read about suggestions on everything, not always MS related. No MS topic is off limits or embarrassing either. If there is a short cut to anything, I try it.

Reading and taking charge are ways I keep the MS monster calm. I have days where I cry a lot, but chocolate is my cure. I don’t let MS rule my life. Even if I am unsure about a medication, I talk to my doctor openly about it.

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