National Volunteer Week 2021

National Volunteer Week — April 18-24, 2021

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It’s National Volunteer Week and volunteering has changed over the past year. We haven’t been able to get out and support our favorite organizations as much as we may have liked to. But you probably volunteered more this year than you think did! Maybe you volunteered to help a neighbor who fell on hard times during the pandemic, or made masks and donated them to places that really needed them. Even sharing resources on your social media accounts so your friends and family knew where to find information they needed counts as volunteering.

Whether you did good deeds consciously or subconsciously during these difficult times, just know that your willingness to offer up your time and energy has likely helped more people than you know.

If you’d like to dedicate your time during National Volunteer Week to supporting MSAA’s mission of improving lives for the MS community, we have some easy, safe ways to do so.

Street Squad

As a member of MSAA’s Street Squad, we will send you copies of our impact flyer, which includes information about MS and how MSAA can help. You can share it with your friends, family, and peers. If you want to, you can also hang copies of the flyer anywhere in your area where you might find a community board (with permission, of course).

Virtual Volunteer

Virtually volunteer by following MSAA on social media and sharing our content! MSAA regularly posts on Facebook, Twitter, Instagram, LinkedIn, and Pinterest about our programs and services. Help us spread the word by reposting or sharing with your friends and followers.

Either of these options could have a great impact on people in your community who have been affected by MS. If you have interest in these programs, or have volunteer suggestions, please reach out to Volunteer@mymsaa.org. We appreciate everyone’s efforts!

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Stress Management, Resilience Skills, Time to Shine

By Stacie Prada

Stress isn’t inherently bad, but it feels awful when it causes suffering. Stressful moments are usually only upsetting when my go-to skills aren’t cutting it to skip feelings of tension and anxiety. I’m feeling pushed to do more than I can do, I’m feeling pressured to respond more quickly than I’d like, or I’m interacting with someone who is using bullying tactics. 

When something triggers stress in me, it feels more empowering to think of it as a chance to flex my resilience skills than to say I’m managing my stress. It subtly shifts my perspective from feeling like a victim needing to suppress my natural responses to being an active participant and even champion in the outcome. Managing stress may not have the same connotations for everyone, but to me it feels like a compromise.

If I think of stress as bad and my body saying I’m failing or bad at dealing with things, it sabotages my ability to get through the moment with self-control and grace. Instead, I’m aiming to notice stress as my body telling me it’s ready to really perform at peak level.  It’s alert, energized and capable.  It’s ready to shine.

Time to Shine - Stress Management

My mantra this week is, “Breathe, focus, and shine.” I say it to myself as I leave home in the morning.  I remind myself to take a moment, consider the situation, and choose the best path forward.  I’ve been working to remember in stressful moments that I can slow down and behave deliberately.  Respond instead of react. Remember I have options, and I am choosing my behavior. I’m not obligated to a specific reaction. 

Stress makes everything feel urgent, but that’s exactly when I need to set my own pace.  When it’s a person testing my resilience skills, I need to listen more, ask a question, listen again.  Slow the tempo of my dialogue and know that listening to a person who is mad doesn’t mean I’m disconnecting or agreeing with them.  Let them experience their emotions without feeling obligated to join them on their roller coaster of frustration, anger, or abuse.

In everyday behavior, I can proactively live a life that nurtures my body and builds resilience for navigating stressful moments when they arise. Have fun, live with purpose and know I have value in this world. I can nourish my whole self with good nutrition, movement, self-reflection and connection with others.  Network with colleagues, teammates, friends and mentors who can give perspective and suggestions. Connect with people who experience similar life stressors and can share their approach and successes.

I want to react to stress by pausing and asking myself this:
If I was the most skilled person in the world to deal with this, what would I do?

It doesn’t matter if I am the best person in the world to deal with it or not, because I am the one dealing with this.  It might mean I just need to take a momentary breath to think it through. I might need to take a longer break and come back to it another time with a fresh mind. Maybe I should contact someone I know who could help me with it.  I might literally be the worst person in the world to deal with this, but thinking about what the best person would do will help me figure it out. It can be my time to shine.

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old.  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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Stress Management

By Lauren Kovacs

We are surrounded by stress of all kinds. Each kind needs different management. But, don’t surrender to it. You gotta be like a ninja in your approach. Sneak up on it. Don’t stress about stress.

I try to fight each stressor individually. A custom fight. Each one gets something different. How special.

I do try different ways of dealing with each. Breathing through it can work. I admit, I get frustrating and start to cry. But, being raised by a military man, I learned to plow through frustrations. Identify it is stressing you out and find a solution. Crying can be a good release, but don’t stay too long.

Listening to music is a big help. I listen to my favorite tunes. Some power me up and others mellow me out. My boys hate my music, but it gets me through. I have a song I listened too before gymnastic meets. I was too legit to quit. Keep going.

Anger, for me, at something being hard has helped me. I often stress about getting shoes on. Shoe fights. I start sweating. I sing to myself. I am too legit to quit.

My mom recently entered a memory care home. I can’t stress about that so, I have some chocolate. One little piece helps me and I try and be positive too.

Stress is all around. It can be small like just brushing your hair without smacking yourself in the face. It can be big like a loved one saying something mean. Try different ways to squish that stress bug.

At times, the stress bug will quiet right away. Other times, it seems to have nine lives. Smoosh it each time with a different tactic. Just don’t give in. Something will quiet that bug. Two bits of chocolate or more might be needed.

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Ideas for Stress Management

Living with MS can be super stressful, especially when you’re living in the middle of a pandemic. Now is the best time to start practicing stress management techniques to help you overcome stressful moments. Here are a few ideas for stress management that can help you get through tough times.

·      Exercise

Keeping your body as active as possible on a regular basis is a great way to balance your nervous system and flush out those inconvenient stress hormones.

·      Eat a balanced diet

Well-nourished bodies manage stressful moments better. Eat more fruits and vegetables, avoid processed foods and sugar, and drink plenty of water.

·      Connect with friends and family

Although most of us are seeing our friends and family online or on a virtual basis, it still helps to release stress hormones by seeing their faces and hearing their voices. Even when it is through a screen.

·      Have some “Me” time

If you have a hobby or something you love to do, schedule some time to do whatever it is that you love to do. Whether it is reading, writing, napping, or watching tv, makes sure you spend some time doing what makes you feel happy and relaxed.

·      Get a good night’s rest

Sleep is extremely important. Getting a good night’s rest can set your day up for success just as much as a poor night’s rest can start your day off on the wrong foot. Getting between seven and eight hours of sleep can actually improve your ability to manage stress.

·      Talk to a mental health professional

If you are feeling overwhelmed by stress and are struggling to effectively cope and mange life’s stressful moments, it’s important to seek professional help.

Your health and life are absolutely worth it.

No stress neon | Neon quotes, Neon words, Neon signs
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We Can All Use a Good Chuckle Now and Again

I think we can all agree that life has been especially heavy lately. The world turned upside down last year with the pandemic and we are still living with uncertainty and concerns daily. Stress levels have soared, and this can have lasting negative effects on one’s health. So how can we help manage our stress? There are many ways, but a fun one is through laughter.

Having a good chuckle is good for the body and the soul. You wouldn’t necessarily think that laughter could have real, significant health benefits, but it can! Especially for managing stress. Laughter helps to stimulate organs, reduce stress hormones, and relieve pain. It helps boost mood and soothe tension in the body and helps combat depression and anxiety. It’s fun to do and even something you can fake at first until it comes more naturally. There are many benefits to laughter and its skills are plentiful.

It’s important to look for humor in life wherever you can find it. Life is stressful and chaotic and finding ways to lessen the heaviness of it is key. There are many outlets to find laughter in everyday life. And making this a goal can help to reduce stress, without putting in a lot of effort. Laughing with friends and family, at media, and even at yourself can bring instant change to your attitude and demeanor. Things can get so serious a lot of the time. Finding ways to laugh and humorize situations can be just what is needed to lighten the load at times.

After reading more about laughter and its wellness benefits, I see even more truth to the phrase ‘laughter is the best medicine.’ The expression of laughter not only increases happiness and elevates mood, but it also helps connects us to others and stimulates positive thoughts and feelings. So let out a chuckle…it can do a world of good.  

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Omayra Rivera-Filardi – April 2021 Artist of the Month

Each year, we feature the work of artists affected by multiple sclerosis in our annual MSAA Art Showcase, including highlighting one artist each month as our Artist of the Month. This month, we are proud to feature artist Omayra Rivera-Filardi of Bridgeport, CT:

Omayra Rivera-Filardi artwork entitled "Unfiltered"
“Unfiltered”

About the Artist

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Community Views: The Strangest Comments Heard by the MS Community

If there is any doubt that multiple sclerosis (MS) is one of the most misunderstood diagnoses, then all one has to do is be a fly on the wall when someone with MS shares that they are living with the condition. 

To find out more about all the ridiculous things people say when they learn someone has MS, we reached out to followers of our Facebook page. We asked community members to tell us: “What is the silliest, funniest, or most face palm-ish response you have heard when you told someone you have MS?” 

Responses from more than 300 community members poured in. Here are some of their answers.

It is your fault you have MS

Doctors are not sure what causes MS. They believe it is triggered by a combination of factors, such as genetics, an abnormal immune response, and environmental factors. Still, that has not stopped some people from blaming MS on someone’s lifestyle, dietary choices, or even negative thoughts. Many in the MS community have been accused of living their lives in a way that made them responsible for getting MS, which is not the case at all. 

“My sister once told me that it was my own fault that I have MS. That I should have taken better care of myself.” 

“I had one girl tell me it was because I watched the news and ‘took that negativity into my body.’ All I have to do to be cured is change the channel?” 

“When I was first diagnosed, the on-call neurologist at the ER said it was my fault because I was not taking vitamins as I should be after gastric sleeve surgery.” 

“Do you think you did something to cause it?” 

That someone is too young – or too old to have MS

Curiously, community members shared that people have told them they were too young or too old to have MS. Most typically, the diagnosis shows up between the ages of 20 and 40, but that does not mean it cannot show up sooner – or later. MS does not discriminate based on age.

“I was in the hospital after just being diagnosed when my aunt said to me ‘You are too old to be diagnosed with MS. Uncle Ronnie was diagnosed at a younger age. You do not have MS.’ I was 44. She still refuses to acknowledge I have MS.” 

“You are awfully young to have that.” 

The right diet can cure MS

So many people shared that strangers are more than eager to comment on their diets, even if they do not know the person well. Diet does not cause MS, nor can diet cure it. 

“A ketogenic diet will cure MS and Hashimoto’s! I have Hashimoto’s too.” 

“You should change your diet. This from someone who has no clue what I eat.” 

“Have you tried cutting out those artificial sweeteners from your diet?” 

“You just need to cut out sugar!” 

Other things can “cure” MS

Yes, there are medicines that can bring relief from symptoms and slow the progression of MS, but there are no cures. A few community members shared that people have suggested some rather unusual “cures” for MS

“Years ago, my friend’s boyfriend asked me why I could not just have the lesions on my brain and spine removed to fix the problem?” 

“They said they had it too, but their MS was cured. I said there was no cure. She said she was cured because her ‘myelins’ were adjusted.” 

Thank you to everyone who offered answers. It is our hope that people who read this better understand what it is like to have MS thanks to your willingness to share your experiences.

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Improving Mental Health and Wellness

MS Awareness Month

Dr. Adam Kaplin, Dr. Annette Okai, Dr. Amy Sullivan, Dr. Mitzi Williams

For this year’s MS Awareness Month campaign, MSAA provided a number of digital resources focusing on Improving Mental Health and Wellness. This campaign featured webinars, a podcast episode, and insights from MS experts covering topics, such as:

  • Purpose in Life (PIL) – This research area focuses on the interactions between mind and body in powerful ways. PIL has been shown to significantly support the central nervous system, cardiovascular health, and even the immune system. Explore the concept and learn how to develop and foster your own Purpose in Life in the archived webinar, “Finding Purpose in Life.”
  • Depression and Anxiety in MS – Depression is a common and often overlooked symptom of MS, while anxiety is perhaps the most taxing and under-treated psychological effect of living with multiple sclerosis. Discover helpful strategies to manage these significant mental health issues in the archived webinar, “Managing Depression and Anxiety in MS.”
  • Care Partnering – Learn about the often overlooked physical and emotional needs of care partners and how to avoid care partner burnout in the podcast episode, “Caring for the Care Partner.”
  • Wellness Strategies – Find helpful strategies to better manage four key areas that impact mental and emotional health – sleep, staying connected, diet and exercise, and self-care – on My MSAA Community.

Learn more about Improving Mental Health and Wellness through these resources at: mymsaa.org/ms-awareness-month

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I cling to hope that everything will be okay

By Penelope Conway

A ray of hope and sunshine on a cloudy day.

No one hates multiple sclerosis more than those of us living with it. When something happens that I can’t do anything about, I used to get frustrated and even angry. I hated not being in charge of my life, my brain and my body. MS gave me a wake up call on that kind of thinking.

My mental health was in danger of collapsing. Does that sound like I’m over-exaggerating things? Well, I’m not. Life was changing too fast and I was caught in a mental fog of weariness and disbelief.

The morning after my diagnosis I awakened and for a moment not just forgot what I had planned for the day, but who I was, what day it was, where I was and basically everything and anything about life. That was my morning wake up experience.

For a few minutes I sat in my bed and my mind was completely blank. Nothing, and I mean nothing, was there. It was a weird feeling. Most of the time that kind of thing happens when I’m startled awake from a deep sleep. It just takes my brain a bit longer to wake up than the rest of me.

I found it hard to explain to people what I needed and why that need existed when the person I was talking to couldn’t physically see the struggle I was facing. Opening your heart up like that can be a scary thing. After all, you are sharing a weakness and need with someone hoping they will handle it with care and support. That doesn’t always happen, but it’s important to try.

Because of MS, I have learned that sometimes in life we aren’t going to know what to do, and that’s okay. Sometimes, we aren’t going to know why things happen, how to fix them, or when or if they will get better. Sometimes, we are going to stumble our way through our day…many times literally. Sometimes we will find everything going well, then all of a sudden get slugged in the gut from out of nowhere with circumstances that change our day and life forever.

Sometimes life just is. As I say many times a day…it is what it is. I could allow everything in life from MS physical challenges, unbearable pain, financial difficulties, and emotional stress wear me down to the point of collapse or I could hang on when I’m at my weakest and cling to the hope that everything will to be okay and remind myself that my life is full of meaning and purpose.

When you’re in the middle of something awful, it’s hard to believe that things will work out. It’s hard to even believe that you will make it to tomorrow with the weight you are carrying and the dark clouds that are looming, but I can assure you, you are going to make it.

Think back on everything you have been through in life. Some of the difficult times seemed impossible to endure and had you sinking in despair. You have been hit with some awful moments. Things that even the bravest and strongest of people would collapse under, but you made it.

You are not alone with your MS struggles. No one living with MS has an instruction booklet on how MS is going to affect people or something that shows them what they should do with each new challenge or symptom they experience. MS didn’t come nicely packaged in pretty wrapping paper and tied together with ribbons and bows. If it did I would give it back…with a wedgie.

When you start to feel lost along your journey, try not to hide yourself away. Step out from the fears and keep walking the road laid out in front of you. Even though MS may be difficult at the moment, I know you can do this. I know you are going to make it.

Divide your day up into small segments and celebrate each one that you complete. Did you wake up today? Check! That’s your first victory to make note of.

You will find by celebrating each moment, that your day is filled with many more victories than defeats. Then when your day is over, you will know that you fought great battles, and although bruised and limping…you made it!

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2013. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

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Purpose in Life

This famous quote, “The purpose of life is a life with purpose” resonates with me.  I often stop and think about my purpose in life.  I am a mother, daughter, sister, aunt, friend, wife, caretaker, and a social worker.  As I reflect on my purpose, I have come to learn that I enjoy helping others.  Working for MSAA offers me the opportunity to help the MS community.  I hope to provide a safe place for many to call in for help and to find support.  I feel a great sense of pride knowing I can help and navigate others through uncharted waters in a time of need.

So, my question to you is: What is your purpose?  Is it maybe being a friend, maybe being a spouse, or maybe simply it is doing things that bring you happiness?  Sometimes finding the answer is easy, and sometimes it takes time to see where we are appreciated most. If you are struggling to answer this question, do not be afraid to turn to others for guidance and friendly suggestions. Those around you often see the gifts that you exhibit to them that you may not recognize in yourself. This could help you to understand what your purpose is and how to make the best of it.

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