Coping With an MS Diagnosis And What Helped Me

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/ 

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Emotional Wellness

Taking care of your emotional health is as important as taking care of your physical health.  Really, they go hand in hand.  Eating and sleeping well and exercising regularly can help you feel better about yourself.  Conversely, if you are in a good mood, you are more likely to make good decisions related to your physical health.  For example, when you feel good, you’ll look forward to exercise and not view it as a chore.

When I think about emotional wellness, several words come to mind:

Happiness – Are you making choices and doing things that bring you joy?  Life is too short to waste it on things (and even people) that bring you down.

Acceptance – When things don’t go your way or you have a personal setback, you shouldn’t be so hard on yourself.  Take a step back, learn from your mistake and then make a plan to move forward.

Optimism – It’s emotionally draining if you always think the worst will happen.  It can cause serious mental and physical health problems.  So, try being more optimistic; focusing on the positives rather than the negatives in people and situations.

Resiliency – Life is full of setbacks.  What defines us is how we respond to them.  As the band Chumbawamba sang in their 1997 hit Tubthumping, “I get knocked down, but I get up again. You are never gonna keep me down”.  These are simple words to live by.

Positivity – Much like optimism and happiness, it’s important to have a positive outlook on life.  It is so much easier to attack challenges in life with vigor rather than dread.

According to the Mayo Clinic, positive thinking is linked to a wide range of health benefits including:

  • Longer life span
  • Less stress
  • Lower rates of depression
  • Increase resistance to the common cold
  • Better stress management and coping skills
  • Lower risk of cardiovascular disease-related death
  • Increase physical well-being
  • Better psychological health

This doesn’t mean that everything in your life will always be positive.  It’s normal to have a variety of emotions.  However, working to replace unhealthy thought patterns with positive ones will help prevent you from getting stuck in negativity.  Give it a try and see what happens.  I’m positive you’ll think it’s a better way to live!

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Mothering Through MS

By: Meagan Freeman

How will my children remember me?

Isn’t that a question every parent asks? We want to set the best example for our kids, leaving a legacy behind when we are gone. Often, this is one of the main reasons people choose to become parents in the first place. One of the first fears in the minds of parents who are diagnosed with MS is: “How will this disease affect my ability to parent?” Followed soon by, “Will my young children remember me when I was healthy?” MS often strikes in the prime of adulthood, when most people are finally successful in a career, finally married, or starting new families. This is the cruelest aspect of this illness, the theft of young optimism. We want our children to recall these years of health, vitality, energy and strength. We want them to remember vacations, playing ball, swimming, and dancing with us. We want them to remember us as young, beautiful adults who never failed them; however, illness interferes with that image, and creates an image of inability and dependence.

Mothers with MS face an incredible challenge, coping with an incurable illness while tending to the needs of little ones, putting the needs of others before their own. In my own family, I witnessed the strength and perseverance of two mothers, facing incredible odds, refusing to give up no matter how difficult life got. MS was no match for these incredible women I am referring to, my grandmother Bette, and her daughter Susan, who happens to be my own mother. My grandmother was diagnosed with MS in the 1950s, and she had 7 children at the time. As a child of 5 or 6, I have vivid memories of visiting the home of my grandparents. We spent many holidays there, the home where my mother and her 6 siblings grew up. My grandfather Stan was the breadwinner, and my grandmother Bette struggled while trying to raise her children. She had been diagnosed with multiple sclerosis in the 1950s, when there were no treatments available. She was basically told to “get in bed and stay there.” Faith, love, and hope were the keys to their success, and my grandparents were a living example of heroism and true love despite devastating life circumstances.

When I feel weak, I think of them. When I feel overwhelmed with my lot in life, I think of them. When I want to give up, cursing the universe for the bad hand I was dealt, I think of them. When I question whether truly unconditional love exists, all I need to do is recall this life story and look at their pictures. Despite MS, my grandmother dedicated her life to her children, instilling love and values that remain to this day. You see, what matters at the end is our life story, our legacy; the story that will be told to future generations. Each of us is slowly writing a story that will be told someday, and it is incredibly important that we write one that we will feel proud of.

My mother was the oldest child in her family. Due to her mother’s progressive MS, at age 12, she took over a majority of the household chores and duties, becoming a surrogate mother for the 6 younger siblings in the home. My mother needed to grow up quickly, and assume the role of a parent at a very young age. At the time, there was simply no choice. Rather than playing, my mom would cook, clean, and help younger children bathe. She sacrificed her own needs for those of her family, and she never failed in her duty. The defining characteristic of a mother is the resolve to care for her children and protect them from harm, no matter what. My mother continued to care for others when I was born, and she was the most wonderful mother anyone could have asked for; I truly don’t know how I got so lucky! She provided me with a beautiful childhood, and gave me all any child could ever need, always putting my needs before her own.

My mother set a wonderful example for me, and I try to carry that on each day. I struggle with MS daily, but despite those struggles, I can still enjoy my children. I see their innocence, their desire to see the world as a beautiful place. My goal is to continue to allow them to see things as awe-inspiring, breathtaking and amazing for as many years as possible. I try to share openly and honestly with them, letting them see certain aspects of my disease, but shielding them from others. I am fortunate to have witnessed two incredible examples of motherhood in my own family, and I think of these incredible women every day. Each mother with MS is going above and beyond, coping with physical challenges while sacrificing daily for her children. Thank you to every one of the MS moms in the world; each of you is a true hero. Thank you, Grandma Bette, and I love you, Mom! Happy Mother’s Day 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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May 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.

May Artist of the Month:
David Desjardins – Union, ME
Country Cottage
David Desjardins - Country Cottage

About the Artist:
“Painting has always been a rewarding way to express myself. Ironically, I find that as my disabilities increase, so does the quality of my work increase.

To me, there is no better feeling than hearing someone tell me how much they love a painting I created. It gives me a tremendous feeling of well-being and accomplishment every time I finish one.”
Read more

Send an eCard

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Stories to Inspire: MS Client Swims for MS and More

By Peter Damiri

“I actually hugged my doctor when I found out I had MS,” explained Simone Sanders, 29, of Seaside, California. “After having so many symptoms for so long, I was relieved they found out what was wrong with me and that something could be done to help. But then, I was also frustrated that I had a chronic illness that had no cure.”

Simone struggled with a myriad of unexplained medical issues since her early 20s. Following the onset of several severe exacerbations, she underwent MRI testing and received the official diagnosis of multiple sclerosis.

“I lost my vision, couldn’t walk, and lost my job,” recalled Simone. “I couldn’t drive or go anywhere, wasn’t active, and became very depressed. But I found support from MSAA as well as talking with others who have MS. They pulled me out of my depression and helped me realize that I can accept my diagnosis of MS but do not have to be crippled by it.”

Now married to an Airman First Class in the United States Airforce and looking to start a family, Simone has since regained the majority of her vision and ability to walk, but still struggles with daily fatigue and a variety of periodic MS symptoms. However, rather than focusing on the negative, Simone maintains a powerful fighting spirit as she strives to improve her physical and emotional wellbeing through diet, exercise and a deep, personal commitment to help others with MS.

“I try to be as active as I can, running 5K charity races with my cooling vest from MSAA – which has been a lifesaver. I’m always looking for new ways to help the MS community and was happy to find Swim for MS,” said Simone.

“I had a passion for swimming ever since I was eight-years-old and was really good at it. After my diagnosis, it made sense to go back to swimming and exercising in the water, especially when I had access to a pool. Then when I heard about Swim for MS I said, this really fits with my interests and passion and it’s for a good cause for people like me.”

With the goals of swimming 1,000 laps in three months and raising $1,000 for MSAA, Simone began her Swim for MS challenge in late March. She bases her ambitious goal on her average swim of 10 laps per day, but also recognizes this can fluctuate due to her struggles with fatigue and other MS factors.

“Some days are really bad days and even some weeks are bad, but when I’m in the pool I know that I can push myself to do my best,” said Simone. “The coolness of the water helps keep me from being overheated and I can float to rest when needed.”

Recognizing the benefits she receives from her cool suit, Simone would like to dedicate donations from her Swim for MS fundraiser to help support MSAA’s Cooling Program as well as other vital services. She recently enlisted the support of her mother to help recruit donations from family members and plans to promote her Swim challenge to her new military family as well.

“Even though my goal is to swim 1,000 laps, I feel accomplished no matter how many I finish because in spite of everything I’ve been through, I’m still able to swim,” Simone said. “I tell myself every day to have courage and have faith. Have the courage to get up in the morning and have the faith to get through the day, and do the best you can.”

MSAA would like to thank Simone for granting us this interview, choosing to support the MS community through Swim for MS, and inspiring all of us to stay positive and keep fighting every day. To visit Simone’s webpage and support her Swim for MS challenge, please visit: http://support.mymsaa.org/goto/simoneswim. For more information on aquatic exercise and MS or how to start your own Swim for MS fundraiser, please access www.SwimForMS.org.

Simone Sanders - Copy

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Relationships and MS – check out the new issue of The Motivator

Motivator_WS16_emailheaderThe latest issue of The Motivator is now available to order, download, or read the DIGITAL EDITION right on your desktop, tablet, or phone!

Included in this issue of The Motivator:

Cover Story:Motivator_WS16_digital_spread

Making the Most of Our Relationships: Helping ourselves and those around us to cope with MS

… From family and friends to employers and coworkers, the diagnosis of MS can impact how we interact and care for one another.
Read the full story

Research News:
… Information is provided on three investigational medications as they make their way toward FDA approval, two of which are being studied for progressive MS.
Read the full story

Up Front:
… MSAA’s new President and CEO Gina Ross Murdoch talks about her exciting role as well as important events at MSAA.
Read the full story

Program Notes:
… The launch of MSAA’s redesigned and responsive website, ways to stay informed, and MSAA’s new video on pseudobulbar affect (PBA), are featured.
Read the full story

Read the latest issue of The Motivator – and be sure to check out all of the interactive features in the NEW digital edition by clicking “View Digital Edition” on the page!

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MS Mood Swings

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You can only blame lack of sleep for so much before you start asking “Why is my mood so inconsistent!”  Turns out, it’s not just fatigue – it’s actually a common symptom of MS! As with many invisible symptoms that can occur with MS, mood swings can have a profound effect on relationships and emotional health as a whole.

Our phenomenal contributor, Devin, described this frustrating symptom perfectly in his recent article “Invisible Symptoms of MS: Mood Swings” and the community rallied behind him sharing their own stories and support.

It became clear that this is not uncommon, and while difficult to manage, having the support of other people with MS can make all the difference. Here are just some of the comments our community members shared:

Sometimes, even I can’t figure out why I’m upset

  • I never thought my mood swings could be MS- related. Sometimes I can’t explain to myself why I’m reacting as I am.
  • Since my diagnosis, I cry at every chick flick and even the Budweiser Clydesdale commercials! I can’t seem to get my emotions together sometimes
  • There are times I know I’m picking a fight with my husband about something stupid, but I don’t even know why I’m upset!

I just thought I was crazy!

  • I always thought it was just who I am. An emotional roller coaster with frequent break downs.
  • The problem is most people don’t know about this symptom, so I get more depressed because I feel like people think I’m losing your mind.
  • I always know when my meds aren’t working because I start to feel like I’m going crazy – then I have a lot of people to apologize to
  • I just thought I had gone crazy: I didn’t think it could be a MS symptom. It puts my mind at ease to know I’m not alone.
  • I thought I was just a raving lunatic!

Knowing why is one thing; managing these swings is another!

  • It feels normal in the moment; not until after that I look back and realize just how moody I was being. I know it’s the MS, but I don’t know how to control it
  • I definitely get moody, but what can you do? I just live with it and try to stay strong! Laughter is key.
  • I can feel it coming on – as soon as I start to feel practically homicidal I isolate myself in my room and wait it out.
  • Knowing my MS was the cause of my mood swings was a relief, but finding ways to conquer them is the next challenge.

How about you? Have mood swings impacted your life? Have you found any good approaches for managing these? Feel free to share with the community – you are not alone!

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Easy Home Gardening Tips for a Fruitful Summer

Love the taste of fresh vegetables in the summer? Enjoy the feeling of tending to precious plants? Why not garden?

I have to admit, the idea of digging a big hole in the ground, then having to bend or stoop down to tend to it isn’t very appealing. But gardening can have many therapeutic benefits; in fact the therapeutic benefits of garden environments have been documented since ancient times and can help to improve memory, cognition, depression, and anxiety.

The interaction one has with the healing elements of nature helps to nourish the soul, and in this case the body as well.

Many fruits and vegetables can grow in easy, portable containers; making gardening more accessible for everyone. Local grocery stores, home improvement stores, or farmers markets sell the starter kits that come ready to plant! Pick a container and some potting soil and you’re one step closer to fresh fruits and veggies. While the initial cost to purchase the containers, soil, and plants may be high; consider the reward all summer of essentially “free” food.

plant

There are actually at least 35 fruits and vegetables that you can grow in containers; ones that actually thrive in this environment. Some more common and easy options are tomatoes, zucchini and summer squash, peppers, leafy greens (kale, spinach, lettuce), and citrus fruits.

tomato

 

Best-Fall-Vegetables-to-Grow-on-Your-Apartment-Balcony

 

 

 

 

Consider your outdoor space when planning your garden. Plant containers can be placed on tables, blocks, railings, hanging baskets, virtually anywhere! If you plan to use a large container, consider the overall weight when filled. Plant caddies are great for moving larger pots and can be purchased at the local home improvement or garden store.

Home gardening certainly has its trials and tribulations, but we can all learn from each other. Share your gardening experience in the comments below.

plant caddy

References:

http://www.npr.org/sections/thesalt/2012/02/17/147050691/can-gardening-help-troubled-minds-heal

The 35 Easiest Container and Pot Friendly Fruits, Vegetables and Herbs

 

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Hello there, Earth!

Today individuals around the world will celebrate Earth Day, an annual event known to promote environmental awareness and energy conservation. Sometimes it’s easy to take advantage of our planet and all the wonderfulness it has to offer. This is to no fault of our own—life gets busy and chaotic, and our day to day routines get in the way of appreciating the world around us. But if we consciously make the decision to stop just for a moment to take a look around at the beauty of the Earth, it will no doubt create a moment where being present and mindful of our surroundings will ignite this newfound appreciation and gratitude for the world in which we live. And there are some things we can do every day to try and preserve the splendor of the planet and its nature.

Earth-Day-2016-Poster-Earth-Day-Network

  • Recycle, recycle, and recycle!
  • Conserve energy by turning off lights and running water when not in use
  • Opt for using another mode of transportation instead of driving if able
  • Plant or garden to bring more life to the Earth
  • Raise awareness in your community for environmental protection causes

 

So this Earth Day, take a moment to join a movement, a cause, a venture to help care for our planet and all its beauty and glory. Our Earth is precious and allows us to do so much; shouldn’t we help take care of it in return?

 

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Uhthoff’s Phenomenon: Keeping Heat Related Symptoms at Bay

“Uhthoff’s what?” you may be asking yourself. Yes it is a funny name, but it has a more serious meaning. This common symptom of MS can be very troubling, especially when it happens abruptly. Uhthoff’s syndrome or phenomenon is described by clients as a dimming or reduction in vision, usually associated with exercise or overheating.

A 2011 study finds that approximately 60% of MS patients report heat sensitivity. Heat sensitivity is defined as a temporary worsening of MS symptoms when the weather becomes hot or humid. These symptoms are also common when running a fever, or participating in exercise activities.

While Uhthoff’s phenomenon relates solely to vision issues, in the Swedish study heat sensitivity was also discovered as a significant factor relating not only to fatigue but also to several other common MS symptoms such as pain, concentration difficulties, and urination urgency.

Heat sensitivity can cause a number of challenges to individuals with MS. One of the more challenging issues involves determining if the change in symptom is caused by MS disease activity, or other causes such as heat. This experience can be worrisome and cause individuals to fear that their MS is somehow getting worse, or possibly progressing.

So what can you do to combat the heat? Be mindful of how heat can impact your MS symptoms. Planning is the key to keeping heat related symptoms at rest; plan activities around cooler times of the day, either early in the morning or later in the evening.

What tips and tools have you developed to keep heat related symptoms at bay?

References:

http://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-11-27

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