What to Expect When You’re Not Expecting…

By Scott Cremeans

As a seventeen-year veteran MSer, I am sometimes asked to advise the newly diagnosed. Sometimes I am the one to welcome the recently initiated into the fraternity or sorority of MSers. Questions get posed to me all of the time typically asking the same queries in different forms. Is MS a death sentence?  No. You have MS, how do you look so good?  Oil of Olay. What now? Live your life.

Then one gentleman’s query put me in a quandary. Continue reading

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Read All About It: MSAA’s Newest Publications

Recently, the Multiple Sclerosis Association of America proudly published two new publications: the Winter/Spring 2018 Edition of The Motivator, and the 2018 MS Research Update.

This newest edition of The Motivator features the cover story, “Finding Direction When Newly Diagnosed,” which covers a range of topics including MS basics, treatment options, employment issues, government programs, and more.

The 2018 MS Research Update provides a comprehensive overview of study results on many of the approved and experimental disease-modifying therapies for MS, as well as highlights on new directions in MS research.

Read excerpts from these two publications here:

Continue reading

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I’m Not Ready

This month we’re talking about wellness and this sort of fits in to wellness but it also just fits into life. I recently spoke with a young man and being the empath I sometimes am, what he said resonated with me on a person-to-person level. It’s not MS specific or specific for a gender, age, or race. This, I think, can be anyone and when I spoke with him it definitely was me. This young man not yet 25 years old had just found out he has MS and was not even out of the hospital parking lot contacted our helpline to…well honestly to vent. But not in an I just need to yell or scream or I need someone to blame way. His first words after Hello and the usual exchange of courteous pleasantries was “I’m not ready.”

Confused, I sat quietly trying to decide what, if anything, I should say in response and before I had crafted my next sentence he continued “I’m lost and I don’t know if you can help me but I am just not ready. I’m not prepared for this or know what to say or do. I am not open enough or smart enough for this. I’m not sick enough or old enough. I’m just not strong enough for this. I’m not ready.” We spoke for a while about the world he’d just entered, what he wanted to do next and what MSAA did. But mostly he spoke, listed and got lost in thought and I listened as he exhaled a breath he’d probably been holding for some time. Before finishing he asked me, “Do you have any idea what I mean?”

And I did; I do. I can’t relate to the diagnosis but I’ve been there, the I’m not ______ enough place. I’m not friendly enough, prepared enough, knowledgeable enough or good enough. I’m not helping enough, understanding enough, empathizing enough or listening enough. I’m not enough for them or won’t be enough to do this. I know I’m not alone in this (I don’t think I am at least), we all can get there from time to time. We aren’t ready, aren’t available, not right enough, rich enough or poor enough. We’re not well enough or sick enough or we feel we aren’t loved enough or able to love enough. We aren’t able to explain how we feel or why we feel the way we do. We’re not enough for them to stay or we aren’t ready to leave. I’m not sure, I’m not *you fill in the blank*.

It’s hard being able to admit the things we feel we aren’t. What we lack or perceive we lack. It makes us vulnerable and exposed, sometimes sad, but it’s also honest. Part of wellness, I believe, is acknowledging these “I’m not _____ enough” statements and facing the feelings they bring out in us. It’s taking the time to recognize the part they play in our lives and seek the assistance or understanding we need to address them. The “I’m not” statement doesn’t have to have the final say; it doesn’t have to be the whole story. I’m not sure if anyone will be able to relate…but just maybe they can.

not-good-enough

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My MS Journey – Jessica’s Story

One of the hardest things about unexpected change is suddenly having a ton of questions and not enough answers, particularly when you are newly diagnosed with MS.  Questions can range from: “what is multiple sclerosis and what are its symptoms?” to “how is MS treated?” to “what does having MS mean for your life?”  However, these questions are never limited to someone recently diagnosed with MS.

My MS Journey is a resource for people at all different stages of their life with multiple sclerosis.  There is “Just Starting Out” for the newly diagnosed, “Staying On Course” for people who are more familiar with how MS affects their body, and “The Seasoned Traveler” for anyone who has lived with MS for a longer time and may be looking for different information.  All three sections of My MS Journey offer a listing of resources including videos and articles to help answer questions as life continues to change around us.

Check out Jessica’s story above for how she felt after being diagnosed with MS.

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What is Your Perspective?

On our helpline here at MSAA we speak with clients every day from across the country who contact us for any number of things. Resources for assistance, information on our programs, clarification on something they saw or read on our site or in our publications and at times they’re looking for someone to speak to who they can bounce ideas off of or just have a listening ear. Recently I spoke with a client who was more newly diagnosed and called to get some broad spectrum information. What struck me at the end of our call was that the client taught me probably more than I did them.

During our conversation we happened upon the idea of changes in perspective. They recounted to me how their world had very much changed when they were diagnosed with MS, in the not too distant past, and how at first they were not sure at all what to do. There were lots of questions, some of which were unfortunately met with little, or vague answers. New terminology to learn. Medicine to juggle. Periods of anger, frustration, and sadness. New planning to do they hadn’t thought of before. I listened as they recounted one such day that found them sitting on the bedroom floor in the dark not sure of what to do next. Unaware of the time that was passing, just sitting. “This,” they told me, “was my finding perspective. I sat on the floor recounting stories to myself of events in my life, and in the middle of my thoughts I found a new way to see things.” After a good deal of time angry and upset on their bedroom floor they sat and recounted all the events that made them proud, excited, and happy. The client didn’t want those events to be the only memories with a happy connotation that they would ever have. All in the past.

The client said they pulled out some scrap paper and made lists of the things they were angry and frustrated over.  Things that they felt they had lost or missed. Along with that, they scribed a list of the things they enjoyed, they wanted to do, they were good at or had interest in. This list, they said, was there perspective. This list was longer and when they read it over they found in it thoughts of how to still visit all the European countries on their bucket list, while dealing with the uncomfortable temperatures. How to volunteer and be part of their community while working in different time increments or events. There they thought of how best to use their love of blogs, working with people and photography to connect with others and raise awareness.

They said they had two ways to go about this and the one they were deciding on was to choose their attitude not to let their attitude be chosen for them. They looked at the list of things they were angry over and decided to choose their attitude toward it. Would it always be easy to change the way they thought about being diagnosed?  No. But if they chose to change their perspective, not from the things they had lost, but toward the things they had and could do, and use and focus on those…it gave them a different perspective. “That,” they told me, “got me off the floor onto my bed.” Then a little while longer to their dining room table where they started to brainstorm, make some new plans and objectives keeping their MS in mind, but not letting their MS choose the plans. Perspective is just what you make it and sometimes that’s easier said than done. But we all have a choice to make in changing the way we look at things. What is your perspective?perspective

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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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My MS Journey

By: Matt Cavallo

As an author and speaker, I have had the privilege of meeting people living with multiple sclerosis at MS events across the country. One of the ties that binds us is that we’re all different. Sure, we experience similar symptoms, whether they be vision, balance, memory related, or other, but each of our journeys is unique.

Whether you are just starting out as recently diagnosed person living with MS or are a seasoned traveler living with the disease for many years, there is a website available with resources to help assist you on that journey, My MS Journey.

My MS Journey organizes MS resources in a central location to help assist you with where you are at in your MS journey. The resources are categorized in an easy-to-use, searchable format. The following blog is step-by-step instruction of how to find information on the site.

5 Steps for Navigating My MS Journey

Let’s say for example that you were newly diagnosed and wanted a resource on how to talk to family and friends. My MS Journey can help using the following steps:

1. Enter the following link into your internet browser: https://mymsaa.org/journey/
2. Click on the picture or heading for your particular journey, in this case Just Starting Out:

MyMSJourney

3. Click on the section header to expand the section, and then click on the hyperlink to open the resource that you would like to select.

juststartingout 4. A new browser window will open up displaying the resource information that you were seeking.

includingfamilyandfriends 5. When you have finished accessing the information, you can either close the tab or click the My MS Journey tab to return to the main site.

Additional Functionality
While My MS Journey is categorized into sections with content and resources to assist you in each step of your journey, the home page of My MS Journey has additional functionality relevant to everyone living with MS.

A. Site Preferences – allows you to control your font size preferences, access keys, and print options to make the site more accessible for you.
B. Helpful links – these links provide tools and resources to help you better manage your MS, like the MS Resource Locator and Prescription Assistance Programs.
C. MS Trivia – impress your friends and family with how much you know about MS by participating in the trivia section. Once you make a selection, the right answer will be displayed along with how others answered.

The front page also allows you to share this site on social media. Sharing this site is important because of all the great resources provided by MSAA to help each one of us living with MS on our journey. Sharing resources that help each of us on our journey helps strengthen the MS community. Thank you for reading and I hope you take advantage of all the great resources that MSAA and My MS Journey have to offer!

*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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Newly Diagnosed with Multiple Sclerosis?

rsz_caucasion_woman_colsoling_friend

People often experience the symptoms of multiple sclerosis long before they receive a formal diagnosis. Getting the diagnosis can result in a whole host of emotions, including confusion, stress, anger, or even relief. Knowing the cause of nagging symptoms can feel like a weight off your shoulders, but learning you have MS can also be a lot to digest.

We asked the MultipleSclerosis.Net community about the tips they would share with someone who has recently been diagnosed with MS. Nearly 300 people responded with some great suggestions. Here is a summary of the recommendations:

Do your research and advocate for yourself:

  • Stay open to ideas outside of mainstream information, but don’t believe everything you read online
  • Education is one of the most powerful tools you (and your caregivers) have
  • Find the right doctor and communicate openly – ask lots of questions and be completely honest (even with the most embarrassing symptoms). If you’re not comfortable, find a new doctor!
  • Make sure your doctor is knowledgeable in treating MS
  • Keep all your medical records

Take care of yourself*:

  • It’s important to manage your overall health – physically and mentally
  • Eat plenty of fruits and vegetables (avoid junk food)
  • Find ways to stay active. Even exercises that are not too strenuous will help you stay strong and limber
  • Give yourself time to get the rest you need
  • Don’t stop taking medications just because you start feeling better
  • Many people find that they are extra sensitive to extreme temperatures, particularly heat. Try to get out when the weather won’t be as bothersome and keep your body temperature as regular as possible

Make sure you have a strong support system:

  • Finding an MS buddy an be an enormous health
  • Work with associations and experts that can help you through the processes
  • Look to religion if it’s helpful for you
  • Keep a network of friends and family that can help you with even the simplest tasks when you need it
  • Keep your stress levels in check:
  • Try to keep stress levels as low as possible – stress can be your worst enemy with MS
  • For times when stress is unavoidable, develop ways to relieve/manage stress before it takes over and affects your health (yoga, meditation, friendship, etc.)

Keep a positive attitude, even when it’s not easy:

  • Know your limitations but find ways to continue enjoying life
  • Find something to be happy about every day
  • Remember that having MS is the “new normal” and be kind to yourself as you adjust
  • Take each day at a time
  • Go through all the necessary emotions – be mad, sad, angry…. then move on.

What advice would you share? Are there things you wish you knew at diagnosis?
*Please consult your doctor before making any changes to your diet or exercise regimen.

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