Coping With an MS Diagnosis And What Helped Me

Posted on May 11, 2016 by MSAA

By: Stacie Prada

Everything can feel urgent when you’ve just been diagnosed with an incurable disease. Remember that you’ve likely had MS for years. You may have increased symptoms and be in the midst of an exacerbation, and you don’t know if your symptoms will dissipate or be your new reality. My advice is to try to relax. I know, it’s easier said than done.

I remember the pervasive fear I had of not knowing if what I was doing was unknowingly worsening my MS. Wondering how I was going to learn to live with MS and what my future now held overwhelmed me. The lack of control over my body rattled me. It felt like I’d been sucker punched. While I looked the same on the outside, my waking thoughts were now consumed with, “I have MS.”

Coping with an MS diagnosis is a lonely experience, and I can’t think of any other life lesson that prepares you for it. When I was diagnosed with MS, I’d already lived through and recovered from a 110 mile per hour impact car accident, I’d lost my mother in a plane accident, I’d experienced and healed from family drama and trauma that affected me deeply. And yet, being diagnosed with MS required me to pursue healing in a new way. The threat was within me, and it wasn’t a one-time event. This was something that would continue and likely progress. I lost all sense of control and the stability of feeling like I could trust my body. My mantra became, “I don’t know how I’ll learn to live with this, but it will happen.”

My path to making sense of things and being at ease with them will differ from others. All I can share is what I see in hindsight helped me and what I use today to maintain my health and sanity.

If you’re able to, find a counselor you like and see them regularly until you feel like you’ve found some stability. My thought process at the time of diagnosis was that I wanted to have a counselor on deck that knew me and would be available if I needed them in the future. The person I saw validated my feelings, allowed me to vent on things that might have injured relationships if shared with the people involved, and helped me cope with a huge life shift. I can’t stress enough that the counselor needs to be a person you trust and feel comfortable with. Don’t push it. If it doesn’t feel right, find someone else.
Look to people with attitudes about adversity that inspire you. For me, two exceptional people who gave me hope were Kris Carr and Cami Walker. Kris Carr has successfully lived with Stage IV liver cancer, used diet and attitude to keep progression at bay, and was living a full, productive life. Cami Walker wrote the book, “29 Gifts,” and describes how she found a way to accept MS and see her value in life through giving.
Non-profit groups like MSAA provide a wealth of information on MS symptoms, treatments, and medications. Search their site for specific symptoms you’re experiencing, and try the suggestions that fit with your lifestyle.
Patients Like Me, patientslikeme.com, is a site that allows you to create a profile and track your symptoms and have access to other people with MS in an anonymous format. This site is terrific for learning about other people’s experiences with medications, knowing methods for their success in treating symptoms, and tracking your own health. Entering medications, symptoms, exacerbations, and general health information is invaluable for monitoring my own health. It’s important to know that this information is used to help researchers try to further the understanding of diseases, assist in treatments, and hopefully find cures. Some people aren’t comfortable sharing this information, but I’ve found it to be useful and confidential in my experience.
Local MS Self-Help groups are a tremendous resource for building relationships and sharing information. These groups involve meeting people who have experienced my challenges and can share their advice. While the information they provide is helpful, I find that meeting people who have lived through the challenges I’m facing and thrived despite symptoms that scare the heck out of me is a huge benefit beyond the suggestions and advice. These people inspire me and reduce the fear I have for potential disability. They provide an understanding ear when I need to talk, they encourage me when I’m nervous, and they share the humor in living with MS.
Facebook groups that focus on people with MS are a more recent addition to my ongoing education and inspiration since they didn’t exist when I was diagnosed. These groups may be public or require you to be added to a closed group. Join to the level that you’re comfortable and that won’t jeopardize your career.
Accept that you’ll likely need a medical team, not just one doctor. In addition to your primary care physician and MS neurologist, it’s helpful to have additional specialists available. When you’re newly diagnosed, you don’t need to fill out the team immediately. Just know that one provider isn’t going to be an expert on every issue you’re experiencing, and they won’t be able to help in every instance. When your neurologist or primary doctor can’t help you with something, consider adding people with expertise in other areas like a physical therapist, counselor, naturopath, or urologist. Tell every provider you see about every issue you’re having. I’ve been pleasantly surprised when my physical therapist was able to solve issues I thought my neurologist would solve but couldn’t.

Be cautious when interacting with people who have MS such as in groups like Patients Like Me and Facebook, and try not to take it personally when people are harsh or say something that feels hurtful. It helps me to remember that other people in these groups are struggling, may be experiencing depression, and may just have terrible communication skills. None of these resources and sources of support will fill every need I have in dealing with my MS. It’s helpful to learn which ones help me in different circumstances depending on my mood and needs.

Overall I don’t expect everyone in my life to understand what I’m going through. Instead I have a menu of resources and a list of people I turn to for support depending on the issue. It’s taken years to create this list, and I keep adding to it.

I realize that my suggestions may be overwhelming. I’ve only taken on one thing at a time since my MS diagnosis. I’ve read suggestions and followed what made sense at the time given my biggest issue. I also discard comments or things I read that don’t fit with my experience.

Other than increased numbness, fatigue and clumsiness, the only thing that changed immediately after my diagnosis was that I knew what was causing my symptoms. It helped me to remember that my health hadn’t changed; only my knowledge of it had. It took me time to learn what helped me, and giving myself permission to take time to adjust helped ease the stress.

*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/

Insurance Enrollment and the MS Community

Posted on December 3, 2014 by Samantha Schech

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

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

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

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

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

My MS Journey

Posted on November 21, 2014 by MSAA

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:

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.

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

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/

The Impact of MS on Everyday life

Posted on September 24, 2014 by MultipleSclerosis.net

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:

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.

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?

Getting Help at Home When You Have MS

Posted on August 18, 2014 by Angel Blair

With years of increasing research and data on the condition of multiple sclerosis, it’s known that MS can be unpredictable and ever-changing in its course, potentially having an impact on different aspects of life for those affected. For some individuals, there may be a time when MS symptoms create change that requires additional assistance in the home, to try to help manage daily activities and duties of the household. Meal preparation, shopping, personal care, and chore responsibilities are some things that may require extra help and attention to complete. Asking for this help can be difficult for some; noticing that how things were done before may look different now and that more help is needed for certain tasks can be hard to accept. Change can be challenging, but it’s important to know that you are not alone in this, that at one time or another everyone’s asked for help, no matter the task. Figuring out what your needs are in the home and where to find help are important parts in starting this process.

Examining what it is that you need help with in the home is a good first step in trying to find assistance. Talking with healthcare professionals like your doctor and possibly a physical or occupational therapist can help determine what your needs are in the home pertaining to your medical condition. Family, friends, or significant others can assist you with this process as well, providing feedback as to what may be helpful and needed to complete certain tasks and duties in the household. Whether it is personal care attendance services or assistive equipment devices, there are a range of services that may be beneficial to you. After your needs have been assessed within the home, supportive resources and contacts can be made to identify potential sources of this assistance.

If you have health insurance coverage, a contact can be made to your insurance provider to identify potential equipment items or in-home health care services that may be a part of your coverage plan. Your insurance provider would be able to explain what services, if any, are offered within your particular health plan. In regards to possible community supports, there are homecare resources and service programs offered through county offices in the U.S. called area agencies on aging. These county offices provide information and referral services regarding community homecare assistance to those with disabilities and older individuals. They maintain a database of information for home health services in the area, as well as caregiver resources and support services.

For individuals whose needs may not currently be at the level of requiring additional assistance in the home, it may be beneficial to explore long-term care options to have a plan in place for potential future needs. Researching long-term care insurance coverage options and other benefits can be useful to attain additional information for homecare services. The non-profit organization Life Happens provides education concerning long- term care insurance benefits and ways to find coverage.

If you do find you need additional assistance in the home, it may be helpful to have a discussion with your doctor first in regards to what your needs are, as this can lead to identifying sources of support within the community.

Mining the Web for MS Resources

Posted on August 15, 2014 by MSAA

By: Matt Cavallo

**Disclaimer: For any new or worsening MS symptoms, please contact your doctor immediately**

The internet is full of good (and not so good) information about multiple sclerosis. There are trusted sources, personal blogs, and social support groups regarding MS. Like everything else in life, when seeking more information about the disease, you must consider the source. The following blog will discuss some online traps that I have fallen into and how to avoid them.

In my mind, a good site for healthcare information should never promise a miracle or solicit patients for money. For example, I was following a very compelling Facebook thread posted in an MS support group linking to the story of a patient. I’m a sucker for a good story, so I started reading about this person and how they overcame all of their MS symptoms. At the bottom of the page, there was a link to their “miracle treatment,” and it brought me to a multi-level marketing website ad for some vitamins.

They drove me to the site with a good story, but their promise of a cure for MS was way off base. Multiple sclerosis is a chronic condition with no known cure, so to promise the people who click on this website a cure is false advertising. Be skeptical of buying any supplement that is either not prescribed to you by your doctor or that you have not discussed with your doctor prior to purchasing. This goes for assistive devices, as well. Before considering any assistive devices, contact your doctor or insurance company to see if the device is approved. You may get an idea from a website, but by going through your doctor and insurance company, you may find that the device, or a similar device, is covered.

As for trusted information, my favorite site is MSAA. In fact I like them so much, I am a contributing blogger for them. I found MSAA because I was looking for educational material to help explain MS to my young boys. What I found was a free picture book that I read to my boys that helped explain daddy’s condition. I found other resources, like their online Relapse Center. Every resource on the MSAA website is evidenced-based and peer- reviewed, so I know that the information is coming from a reliable source.

Another source for MS information that I trust is Healthine.com. Healthline takes complicated medical terms associated with MS and other chronic illnesses and puts them into slideshow format in words that are easy to understand. They also have great weekly columns from fellow MSAA blogger Jeri Burtchell and provide links to MS resources. MSAA and Healthline are my two personal favorite websites to find objective, clinically reviewed information about MS.

Social media is also a great place to find MS support groups and information about the disease. I belong to several social media support groups where members interact online. If you are going to engage in these activities, you must keep in mind personal biases. Participate in an online support group for support, but not for medical advice. These groups are great when you are having a bad day and want validation from your fellow MSers, but I have also seen solicitations or treatment recommendations based upon personal bias. Remember, you and your doctor should make all treatment decisions together, and what you read in an online forum may not be entirely accurate.

The internet is a great place to mine MS resources. There are trusted sources, like MSAA and Healthline, great personal MS blogs, and social media support groups. Just remember to be aware that some of these sites may be trying to solicit, not support you. Any research-based article will say something to the effect of “clinically reviewed” or have a clinical reviewer in the credits. Any website that promises you a cure is a red flag to stay away.

As a person living with MS, the best thing you can do is educate yourself to the disease and others’ experiences living with the disease. The internet is a great place to find resources, but make sure that you can trust the source. Let me know if you come across a good MS site that I haven’t mentioned. Happy mining!

MS Web Resources:
MSAA – https://www.mymsaa.org/
MSAA Relapse Resource Center – https://relapses.mymsaa.org/
Healthline Multiple Sclerosis Center – http://www.healthline.com/health/multiple-sclerosis

The Benefits of Aquatic Exercise and MS

Posted on June 16, 2014 by MSAA

By: Matt Cavallo

Walking was always something that I took for granted until that one day that I couldn’t do it anymore. Then, as I watched the world walk by me, I yearned to be up on my feet ambling about. The problem was that no matter how strong my mind and determination were, my legs would simply not respond. It was hard for me to understand that the problem was in my spine and no amount of mental fortitude could overcome the spinal lesions caused by multiple sclerosis.

I was confined to small, assisted steps. I was able to travel only from my bed or couch to the bathroom and back. My wife brought food and drinks to me when she was home but when she was at work, I usually didn’t eat or drink. I was ashamed that I lost functionality the way I did. I didn’t want people to take pity upon me. I had always been this big, strong athletic guy and now I couldn’t even walk down three steps to get out of my house.

My doctor was confident that I could regain functionality and learn how to walk again. I wasn’t so sure. He said that the Solu-medrol would act to reduce the swelling in my spine, and little by little sensation would return to my legs. He did caution me that I would have to relearn how to walk and ordered me to have aquatic therapy. I was skeptical, but I gave it a shot.

The results were truly amazing. When I started exercising in the pool, my legs felt lighter and easier to move. The exercises really help to strengthen and balance me on my feet. While I was in the water, I felt free again. After three weeks of aquatic therapy, I was walking with a cane for short distances. I was not negotiating steps or hills, but I could get around the house on my own. More importantly, I was able to go to the bathroom again by myself. I was amazed at my progress. In just three short weeks, I was completely independent with walking.

Today, if you saw me in the street you wouldn’t think that I ever lost function of my legs. One of my secrets is that I continue to work out in the pool. I live in Arizona and can use my pool most of the year.

Now, if you are having immediate problems with strength, balance or mobility, you should contact your physician right away. If you are looking for a strengthening exercise routine that you can do on your own, you’ve come to the right place.

MSAA has a new online Aquatic Center that you can access at http://SwimForMS.org. The Aquatic Center has tools and inspirational videos for the MS community. Some of the resources include: guides for patients and healthcare professionals, a handy tip sheet about aquatic exercise and MS, information on how to find an aquatics facility in your area, and inspirational videos from three individuals sharing their personal stories about how water activities have positively impacted their lives.

Even if you don’t live in Arizona, you can still turn any pool, at any time into your own personal gym while raising awareness for MS.

March is MS Awareness Month

Posted on March 5, 2014 by MSAA

The Multiple Sclerosis Association of America (MSAA) recognizes March as MS Awareness Month. Throughout the month, MSAA is raising awareness and improving lives today!

MS Awareness Month is a great opportunity for everyone to learn more about multiple sclerosis and discover all the services and support MSAA offers.

MSAA offers the following ways to learn and support the MS community:

Visit our website, mymsaa.org, which provides easy access to vital information, resources, and tools from your desktop, mobile phone, or tablet.
View any of our educational videos and webinars in our MSi Video Library ranging in topic from MS symptom management to understanding Medicare, and much more.
Read one of our publications, including MSAA’s award-winning magazine, The Motivator, and the recently published MS Research Update with the latest latest findings in MS treatments and research.
Attend one of MSAA’s educational events for people with MS and care partners – check our Calendar of Events to find upcoming programs happening in your area.
Check out MSAA’s 2014 Art Showcase, featuring creative and beautiful artwork by individuals with MS.

Help to spread MS awareness by using MSAA’s “March is MS Awareness Month” badge as your social media profile picture (right-click the image below, save it to your computer, then use it on your Facebook, Twitter, Google+, or LinkedIn account profile pictures).

Also remember to use the hashtag #MSAwareness in your social media posts.

We look forward to everyone learning more about MS during MS Awareness Month. And we greatly appreciate your continued support of our vital mission of improving lives today for the entire MS community.

Self-Advocacy for People with Multiple Sclerosis

Posted on March 3, 2014 by Angel Blair

Different thoughts may come to mind when you hear the word ‘advocacy.’ Some may not be familiar with the term or others may have a very vivid description of what the word means to them. Advocacy can be defined as active support, pleading or arguing in favor of something or for some type of cause. Individuals advocate for themselves in different ways, sometimes without the knowledge that they’re engaging in self-advocacy. When you visit your doctor and ask questions, this is a form of self-advocacy. You are supporting your healthcare by requesting more information to make the best informed decisions you can regarding your care. Some individuals have others assist them with this task at times; family members, friends and caregivers have been known to advocate for care when involved in the healthcare process. Sometimes it’s helpful to have another voice or set of ears advocating for your health needs when interacting with your medical team, and there can be different forms of this advocacy presented.

Here are some ways the MSAA can help you remain an advocate in your healthcare:

My MS Manager™: a mobile-phone application to track disease activity, store medical information, generate reports, and assist individuals with their treatment plan
MSAA’s S.E.A.R.C.H.™ Program: tools to help individuals with learning about the approved long-term treatments for MS, along with questions to discuss with the patient’s medical team
My MS Resource Locator: an MS-specific, online database offering targeted information and unique support services, including detailed guides

What are some ways you advocate for your care?

2013: The Year I Found My MS Voice (Thanks, Dad)

Posted on December 20, 2013 by Samantha Schech

By: Jeri Burtchell

After 15 years with multiple sclerosis (MS), I was sure I had learned all I needed to know about the disease. I’d heard every old wives’ tale, learned about every treatment, and Googled every symptom–real or imagined. Turns out I learned more in 2013 than my entire decade-and-a-half had taught me previously.

Years ago, my dad encouraged me to become a writer. Why, I had no clue. I’d never written anything he’d read except those anxiety-ridden letters from overseas as a young Army wife. Pleas for domestic advice, they had my folks in tears. Not from worry or concern, but the kind you cry when you laugh so hard you can’t catch your breath.

Dad saw a talent I never saw, but I never forgot his words. So when a friend suggested I apply for a writing job posted on Facebook, I thought why not? I believe in stepping through doors that open for you. If you don’t like what’s on the other side, you can always turn tail and run.

Imagine my surprise when I actually landed the gig. I was officially a freelance writer, covering the MS News for www.healthline.com. After my first article published, I squealed when I saw my byline. But writing a weekly article about MS would be challenging. How could there be “news” every single week? No need to worry.

I’ve stayed quite busy since I donned a reporter’s hat. There is so much going on in research now that even if I wrote a daily article I still wouldn’t cover it all.

From the exciting news that researchers in Germany have successfully rebooted the immune systems of some MS patients, to the less than great news that red wine may worsen MS, this past year has been an eye-opener.

My friends were star-struck when I interviewed Shemar Moore from Criminal Minds about his Bike MS event, but my own heart fluttered when I interviewed Dr. Steven Jacobson, Chief of the Viral Immunology Section at the National Institute of Neurological Disorders and Stroke regarding Epstein-Barr Virus and MS. I guess I’m a bit quirky when it comes to who attains “rock star” status in my world. I’m an unscientific science nerd now and MS stands for More Science, please.

It’s been a fascinating journey to live a writer’s life. Every week is a new topic, with MS the theme. Granted, some news is disappointing (the red wine, again), but there is a constant flow of MS news and that is reassuring to me. Knowing there are people out there who’ve dedicated their lives to finding the answers for us gives me hope.

So when asked what I’ve learned looking back on 2013, it would be to keep digging for the truth. To share the facts that surface each time a researcher publishes a paper on their work in the field of MS.

Having to read those papers and form intelligent-sounding questions to use in my interviews has been an ongoing lesson itself. Lucky for me, I love my job.

My most important takeaway from 2013 is that I’ve seen how valuable each of us are who live with this disease. Research would come to a screeching halt and be nothing but unproven theories if not for us. The real heroes are the volunteers who give of themselves to get us closer to a cure.

Research should be something we all consider, not just those out of options. Studies covering everything from new disease modifying therapies to fatigue, cognitive issues and more are enrolling all the time. You can browse through them using a new tool that Healthline just launched. Even if you don’t intend to join, it should give you renewed hope that a cure could be close.

But does the idea of ingesting a mystery medication in the name of science seem a little too sci-fi for you? Relax! That’s not the only way to get involved.

Sites like www.PatientsLikeMe.com give us the opportunity to engage in research by taking surveys. When you answer questions about your health, you are contributing to a gold mine of data that will help researchers in their quest for a cure.

So, while my Dad never lived to see the day I became a published author, his encouragement lives on in my heart and mind. He was right all along. I just needed to go through that door and find my reason to write. I never would have guessed, all those years ago, that my voice would come after getting MS.

So here’s to 2014! May it bring us good health and happiness, and More Science, please!

References:

*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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