MS Highlights – Then and Now

By Debbie Petrina

When my own MS began in 1980, there were only two organizations in the U.S. that supported multiple sclerosis – NMSS and MSAA. Although information and programs were quite scant at the time, development and availability began accelerating during the 1980’s.

There were no personal computers/internet, cell phones, or social media. My first MS peer connection in 1984 was arranged confidentially between myself and another member of the NMSS as a courtesy. Soon after, a team of MS patients began confidential, telephone-peer-counselor training sponsored by the NMSS. I was one of them.

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Dealing with an Unexpected Change with MS

By Matt Cavallo

Multiple sclerosis is an unpredictable disease. I’ve been living with MS for eleven years now and just when I think I am getting the hang of it, something changes and I’ve got to start all over again. When the change is unpredictable, that is when it can be the hardest. This was the case for me when the results of a recent blood test forced me to reconsider my treatment options.

I have been on the same treatment for the past nine years. During that time, my MS was well controlled. My long term plan was always to stay on this treatment. The reason being that I tolerated the treatment well. The only relapse I had during the previous nine years was when I was unable to receive my treatment.

Then came this summer. As I sat across from my neurologist, I knew that something was wrong. He explained to me that my routine lab work concerned him. He felt that my treatment now presented an elevated risk and that it was time to explore new treatment options. I didn’t know how to react. When I came in for my appointment, I wasn’t prepared to discuss changing to a new treatment.

There were many different emotions that ran through me all at once. The first was fear. I was afraid of the unknown. I knew that I tolerated my current treatment and didn’t experience relapses. There was no way to guarantee that I would experience the same kind of positive outcomes on a new treatment.  Also, would that treatment have the same kind of efficacy that I had become used to over the past nine years? On the flip side, would staying on my current relapse expose me to the risk of a potentially fatal side effect?

In addition to the fear, I became angry and started to blame myself for my labs changing. I didn’t know what I did that was different. I was in disbelief with the results and wanted another test to confirm the findings. I left the appointment in denial thinking that the test was wrong and that my risk was still relatively low, so theoretically I could continue my treatment without harming myself. I told my neurologist that I needed some time to think about it and scheduled a follow-up in two weeks.

During that two weeks, I found myself depressed. A second blood test confirmed my fears. I found myself at the crossroads needing to make a difficult decision. On one hand, I could continue down the same familiar road I had been traveling for nine years, but with an increased risk of a scary side effect. On the other hand was a new road and I was unsure what the future would hold on my MS journey. Then came my follow-up appointment.

I was nervous sitting in the waiting room. Even though I had two weeks to consider my change in treatment, I really didn’t know what I was going to tell the doctor. I just knew that whatever I said was going to result in change. I knew that even if I continued on my current treatment that there was increased risk and with that would come increased monitoring and a new sense of worry that didn’t exist before the lab results.

Once we got past the pleasantries, my neurologist looked me in the eyes and asked if I had made a decision. Without thinking about it, I blurted that I would try the new treatment.

With that, I felt a weight lifted off of me. I finally accepted that I had to change and the only way that I would be successful would be to embrace and accept that change. However, I did need to experience all of those emotions before I was open to accepting the change.

The thing that I learned from this situation is that no change should be taken lightly. Pasteur once said that chance favors the prepared mind. In my case: I evaluated my neurologist advice, took a validation blood test, researched the recommended treatments, talked to my wife and loved ones about the pros and cons, and in the end made an informed decision. This was not a change I wanted to make, but the unpredictable nature of MS thrust this upon me. In the end, I am at peace with my decision and embracing the road ahead.

*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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The Art of Reflection

By: Meagan Freeman

The start of a new year brings with it the opportunity for each of us to do an internal review, analyzing the things we experienced during the past 12 months. With an illness like MS, we are constantly challenged to evaluate our treatment choices and lifestyle decisions, and this time of year is a wonderful time to do some reflection. How did we feel during the past year? How many relapses occurred? How are we feeling now compared to the previous year? Are there things we would like to change, or are we content with our current state of health?

Life with MS brings constant, daily “fluctuations,” with some symptoms appearing and quickly disappearing, and others seeming to accumulate and resolve very slowly or not at all. I find that looking back over an entire year, comparing full years rather than days, is more helpful in determining whether my treatments are successful. It is important to keep an optimistic attitude despite our condition, and try to see the coming year as a time of opportunity and renewal.

I always like to spend time around January 1st reflecting on the past year; doing a sort of “life review,” and analyzing the success, failures, and learning opportunities. I am always amazed at how many things have changed during the year, and it takes the perspective of time to realize that. Sometimes, we feel that everything is “stuck,” standing still, and no progress is being made. However, if we simply turn back and look at how far we have come, we can see that everything changes.

Often, I hear other MS patients asking why a cure hasn’t been found yet, why it seems that no progress has been made. I would argue, quite the contrary. From a historical perspective, we can see incredible progress. We have come such a long way in our fight against this disease, even though we haven’t quite reached the end of the battle. We have 13 disease modifying drugs in 2016, and in 1992 there were none. Isn’t that a striking statistic? In just over 30 years, MS has gone from being untreatable, to having 13 possible treatment options. Much progress has been made, and we need to try to keep our collective eyes on the finish line, toward the inevitable day that will bring an ultimate cure for this disease. There is much to be hopeful for, and much to be grateful about. Never lose hope, and stay strong knowing that you are never alone. Happy New Year to all!

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

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Nutrition and Multiple Sclerosis

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As we wrap up this month focusing on reaching out to supportive professionals, there is one other group of professionals that plays an important role in the overall health of individuals with MS. One of the top questions asked in regards to MS care is around the idea of a diet for MS, or which foods to avoid for individuals with MS. Unfortunately, this is a difficult question to answer as there has been no hard science that indicates that any particular food groups are specifically beneficial or not to those with MS.

With MS being a very individualized disease, meaning that it affects each person in a different way, it is difficult to say that one thing will work for everyone.

Just as MS is a very individualized disease, understanding and creating a nutritional plan must be individualized as well. Meeting with a dietitian or a nutritionist may help to better understand the foods and nutrients that your body needs in order to work properly. By working with a professional, he or she can help to safely monitor the changes occurring in your body based on the foods that you add or withdraw, depending on your plan.

Talk to your doctor about a referral to a dietitian or nutritionist in your area. You may also wish to reach out to your insurance provider to learn about insurance coverage for these visits. Licensing and education can vary between those in the nutritional field, it is important to do some research on the professional and their background and beliefs about nutrition. Some nutritionists may have a belief in herbal supplements and other forms of natural healing while others may not. Knowing what you are comfortable with in regards to your treatment and matching that with the appropriate practitioner can aid in the overall process of crafting a healthy regimen for you.

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Remembering the MS Support People

By: Sheryl Skutelsky

I’ve personally switched MS medications 3 times over the 14 years since I was diagnosed. It was a little over a year ago that I went for monthly infusions.

I would walk into the infusion center, and no matter how hectic it seemed at times, there was Kristen always smiling. Especially in the beginning, this was a place of fear for me. My veins saw a needle coming, and they would literally slide to the side. Kristen had the patience of a saint, and the most amazing bedside manner.

Unlike so many, I wasn’t doing well on the medication. I began to experience severe joint pain, and I finally had to give up and move on to the next medication.

However, I will never forget the difference it made in my life to have a nurse like Kristen. She cared about each and every one of us, and I swear she could do 20 things at once and get them all right.

To this day whenever I visit my neurologist, and he says that I need bloodwork done, I’ll patiently wait until Kristen has a free moment – not just because she’s the only one that can find my vein on one try, but because her smile can light up anyone’s bad MS days.

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

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The Impact of MS on Everyday life

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

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

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

MSIA children impact

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

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

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

MSIA support system

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

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

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

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The Empowered Patient: Your Greatest Resource Lies Within

By: Jeri Burtchell

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

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Highlights from the 2014 American Academy of Neurology’s Annual Meeting


MSAA News Update
Please read MSAA’s article summarizing highlights from the American Academy of Neurology’s (AAN’s) 66th Annual Meeting, which was held in Philadelphia and concluded in early May. Neurologists from around the world attended this exciting conference, where the latest findings in MS research and treatments were presented.

Topics highlighted in this article include:

  • Updates on approved treatments for MS
  • Study results on experimental treatments
  • Medications under investigation for progressive forms of MS
  • Pregnancy information for individuals taking disease-modifying therapies
  • and much more!

Read the full article on highlights from this year’s American Academy of Neurology’s (AAN’s) 66th Annual Meeting

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You Can Contribute to Finding the Cure for Multiple Sclerosis:

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If you are looking for a way to get involved or change the future of MS research, the Accelerated Cure Project and NARCOMS (North American Research Committee on Multiple Sclerosis) are great places to get started!

I want to bring attention to these two organizations, which you may not be familiar with and encourage you to look into their websites if you are interested in learning more about what they do.

The Accelerated Cure Project maintains an MS-research repository and also will be launching an online patient powered research effort. They focus on making sure researchers have access to the biospecimens (for example blood, or CSF fluid) they need to conduct research, and then aggregate the results of all of the studies performed using these research samples.The sharing of research information and results helps to expedite the MS research process.

NARCOMS is a voluntary MS registry with over 37,000 registrants currently. They support the increase in collective knowledge of the MS experience through surveys and other activities in hopes that the collective knowledge gained about the MS experience will be helpful to researchers and will also promote a greater understanding of MS.

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The Other Part of Wellness: Emotional Awareness

Throughout the month of January, we have discussed our personal journeys in wellness, but one piece has been missing. Often when we describe wellness, we think of physical activity and healthy eating. But one important piece that hasn’t been discussed is emotional wellness. Emotional wellness is defined as “being attentive to your thoughts, feelings, and behaviors, whether positive or negative” (University of California- Riverside).

In the daily hustle and bustle which is our lives, we forget to think about our feelings and often brush them off or push them away so that we can deal with another task we have been given. The idea behind emotional wellness is to not allow ourselves to push our feelings away.

Becoming aware of your thoughts and feelings can be difficult.  One way to start becoming more aware is to journal. For those who have never kept a journal, starting is the hardest
shutterstock_73933420part. In a previous blog, Dear Diary, I discuss some helpful tips to get started.

Perhaps writing about your feelings is not your thing, maybe talking more openly with a friend or family member would be easier. In everyday conversation, try tuning into your feelings and discussing them more openly. Avoid words like “good,” “fine,” or “OK.” These words are often used when asked how we are feeling, but are not “feeling” words. Some more descriptive feeling words can include “relaxed,” “alone,” or “delighted.” These words provide greater meaning to your emotions and will help you to better understand yourself.

In what ways do you maintain your emotional wellness?

References:

http://wellness.ucr.edu/emotional_wellness.html

 

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