Some of the ABCs

Posted on January 12, 2022 by Angel Blair

Living with MS is a unique and different experience for each person it affects. No two people will have exactly the same symptoms or disease course, but many still find commonalities in their experiences and feelings when it comes to the condition. MS tries to bring a lot of baggage with it, but many find ways to cope and manage the disease in their own way that works for them. This is done with the help and support of healthcare professionals, family, friends, and others in the MS community. As we focus on some of the ABCs of MS this month according to each person’s view of it, I’ve highlighted some factors I’ve seen relate to MS below.

A: Some of the A’s I’ve seen correlate to MS include Acceptance, Adapting, and Adjusting. Hearing a diagnosis of MS brings a period of trying to accept the diagnosis and coming to terms with it. Acceptance is not an easy feat and can take time. It can come in waves and show up again at later points in the disease course too. So, it’s a step that individuals may find themselves faced with multiple times. Finding ways to help accept it can look different and change too and is unique to each person. Adapting and adjusting to some of the changes MS can create is something people find themselves doing often as well. Making changes and modifying things can help maintain balance and expectations. If routines/schedules/tasks need adjusting to help fit your needs better, take time to make these changes so they work for you.

B: B’s associated with MS can include Building and Backup. Building relates to the education and knowledge piece of MS. Building upon information about the disease and continuously learning new facts and resources is an important piece to the process. Continue to build upon your strengths and goals and finding what you enjoy too. Backup refers to the support you put behind you when dealing with MS. Whether it be your own skillsets and strengths, support from others within your circle, education and resources, and health information. It never hurts to have a little backup when needed.

C: The C’s related to MS incorporate Community and Care. Within the MS space there is a great sense of community that many individuals rely and depend on for support. It is vast and has many layers that consist of healthcare teams, MS organizations, peer and familial support, counseling help, and other pieces individuals connect with throughout their MS journey. Community support is a great tool in helping to manage the disease and finding assistance. Care is a crucial piece to the puzzle as well. Finding healthcare, personal, wellness, and emotional care aid is significant in helping cope with the disease and all its factors.

It’s hard to imagine that one disease can have so many differing views of it and be experienced in such vastly different ways, but MS can and does. But no matter how unique each person’s course of it is, there’s still so much to connect and relate to about it. No one is alone in this.

A New Year Ahead

Posted on December 13, 2021 by Angel Blair

I don’t know if it’s just me, but I’m having a hard time believing that we’ll be in a new year soon. Regardless, 2022 is rapidly approaching with each passing day. It feels like time has gone by more quickly, even during a pandemic, and that we’ve just flown through this past year at lightning speed. Luckily 2021 brought with it more hope and opportunity than the previous year. With its vaccine availability we were able to start doing more and seeing people again. The virus has not gone away but there is more protection now than before and with it more hope and high spirits heading into this New Year.

Spending time with others

Hopefully this upcoming year we will see people getting together more often. Of course, all the while still abiding by safety measures and precautions, when possible. But gathering again with friends and loved ones will be a welcome, continued change we hope to see.

Continued research and education

We continue to learn more daily when it comes to the COVID-19 virus and its variants, and hopefully this will continue in 2022. But not only that, MS research and education remain vital for the MS community as well. Treatment investigations, clinical studies, and education programs have increased over the past year and offered avenues of hope for those in the MS space. Education remains key to staying apprised of what’s impacting those touched by MS.

Support and encouragement

It’s been a trying time we’ve found ourselves in for nearly two years now. Things have weighed heavy on people’s emotions and well-being, but support in the MS community has remained strong and resilient. We’ve seen people still connecting with one another through various means to stay linked and provide encouragement to others. Be it online, by phone, or other avenues of communication, members of the MS community tried their best to stay in touch. MS organizations and groups continued to provide vital services as well, letting individuals know they’re not alone.

As we embark upon this New Year, let’s try to stay hopeful for refreshing changes and opportunities that may come. We can continue to hope for better times ahead.

Wishing everyone a hopeful and bright New Year!

To Know, Or Not To Know?

Posted on March 27, 2015 by Angel Blair

That is the question, at least today as it pertains to learning about the disease of MS. As we close in on a month dedicated to MS awareness, many individuals still do not know much about this rare disease. One challenge lies in the fact that the information available on MS can be very overwhelming at times, especially as the internet alone exudes multiple portals of literature and resources about the disease. This can sometimes have the opposite effect on education; rather than pulling people in to learn more, it actually sometimes intimidates people to the point where they shy away from learning more about it. This is completely understandable – MS can be difficult to understand and grasp, so it’s a process to educate oneself and others about it. So the question is, is it better to know, or not to know?

When MS touches the life of someone you know, love, interact with, or share a history with, it can be hard to comprehend what this disease is that’s affecting that person. If you didn’t have knowledge of what it was before, this may be a whole new learning process for you as well. Being part of someone’s support network keeps you tied into what’s going on in their daily experiences, so knowing what MS is and its process can help keep you informed of what they’re going through, and how you may be able to offer support when needed.

It’s not something that can be learned or taught overnight. It’s a process – and one that doesn’t have to be done alone. Talking about MS with family members, friends, peers and other support resources can aid in the significant education piece that comes with the disease. Learning more about it is the first step in knowing what it is and how you can offer your support. It can start with just an overview of MS information, and lead into further discussions and outreach. It’s also important to know that it’s ok to take your time learning about MS – review the information as you’re comfortable doing so at your own pace, and when you have questions reach out and ask. In the matter of MS, the act of knowing can be more beneficial than not.

Share something new you’ve learned about MS…

New MSAA Guest Blogger

Posted on January 26, 2015 by MSAA

Meagan Freeman

I am thrilled to join the MSAA organization as a guest blogger, and I would like to introduce myself. My name is Meagan Freeman, and I am a licensed family nurse practitioner, blogger, MS patient and mom of 6 from Northern California.

I was diagnosed with RRMS in 2009, after experiencing dense numbness of my right torso. This was numbness like no other I had felt, like my torso was not even a part of my body. I was in the middle of my Bachelor’s program in Nursing, working as a full time ER nurse, and a mom of 6 at this time. The diagnosis was devastating, and demotivating. Quitting school was something that I thought about almost immediately, and over and over for months. I tried to ignore those demotivating voices in my head. The ones that say, “you should just stop now. What is the point? Take the easy road, forget it.” I was halfway through my Bachelor’s program, should I quit? I was just going to end up in a wheelchair. Bedridden. Nonverbal. Just like my grandmother. What was the use of finishing school? What was the use of doing ANYTHING now? Images of my grandmother raced through my mind. My maternal grandmother was incapacitated in my memory, due to a long battle with progressive MS. These images were terrifying to me, and I pictured myself in that same state.I thought about quitting school many times, but fortunately I continued.

I finished by Bachelor’s degree in 2010, and began my Masters in Nursing/Family Nurse Practitioner program that fall. It was the greatest challenge I had faced since diagnosis, and I would not be allowed to take “short cuts” because of my MS. This was the first time in my life that I realized that my disease would not grant me any free passes. I would have to achieve and complete this program purely on my own, despite any illness.

An important lesson I learned during the 3 years of higher education I pursued as an MS patient was that we are capable of self -defeat. It would be so much easier to quit, right? On those difficult, painful, fatigue ridden days? It is so tempting to give in and take the easy road, and many people succumb to this path. It doesn’t require MS, either; many individuals find any excuse to give up and take the easy road. You must find that voice that encourages rather than discourages. Find that voice that will carry you through those days. Nothing worth doing is ever easy, so make the choice to be the hero of your own story. You have the ability, now you just need the psychological strength.

On my graduation day, in May of 2012, there was light. Spring, warmth, and brightly colored flowers surrounded me like a renewal, out of the cold winter and into the sun. Every detail of that day is frozen in my memory, never to be erased. The smell of the freshly cut grass, the slow march into the ceremony, the smiles. Like a wedding or the birth of a new baby, this was a day that would live in my mind for the rest of my life, though there was a sense of disappointment along with the accomplishment. There was a pre-graduation let down, and I knew that with the completion of this goal, I would need another. Yes, this was a successful endeavor, but what would be next? For now, I could not focus on anything but that moment. This was a day to spend celebrating, laughing, and feeling a sense of pure joy and relief. Why trouble myself with the future today? Today was a day just to be present.

After graduation, I began to practice in a primary care office as a nurse practitioner. I saw many patients during my day, managing chronic illnesses and performing physicals. I experienced the irony of being both a healer as well as a patient, and some days were not easy. I also began to write more frequently, which was always my lifelong passion. I started to blog, and it was incredibly therapeutic to get feelings down on paper. Today, I have the opportunity to blog weekly on my website, and guest blog for several wonderful organizations. I am happy to be able to pursue these things, and with the support of my husband and family, I hope to continue for many years to come.

Being the “hero” of your own story is the theme of most of my writing today, and I encourage every MS patient to think of life as a story that will someday be told. You have the power to make that story whatever you want it to be, so make it incredible, powerful, and positive. Make that story one that will inspire generations to come. You have the power to achieve anything and everything, regardless of a multiple sclerosis diagnosis.

*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.

Stopping Mental Health Stigma

Posted on October 22, 2014 by Samantha Schech

When you have an infection, you call the doctor. When you have a toothache, you call the dentist. But why when you notice a change in your emotional wellbeing don’t you call a counselor? The mental health stigma (or the view of individuals who seek mental health counselling in a negative way) can have a strong enough effect to stop someone from picking up the phone for help. The idea that an individual is perceived in a negative manner just for the use of mental health services sometimes prevents an individual from seeking care.

In the same ways that the doctor helps cure your infection, or the dentist helps fill your cavity, a counselor or therapist can help guide you through the emotional challenge you may be experiencing. However, fear surrounding the thought of being judged or criticized holds strong enough in some individuals that they will not seek out care.

1 in 5 Americans live with a mental disorder such as depression, bipolar, or anxiety disorder according to the National Alliance on Mental Illness and two-thirds of those diagnosed do not seek treatment. Fears of disclosure or discrimination are some examples of why one would not receive care. Helping to stop mental health stigma opens the doors to mental health treatment and care for those who truly need the support.

Tips for Stopping Mental Health Stigma:

1. Educate those around you about mental health.
Example: With MS, the rate of depression is three times higher than the general population.

2. Use positive language surrounding mental health illnesses
Example: Use phrases such as “a person with depression”; correct people who use inappropriate terms to describe a person.

3. Speak up if you feel you have been discriminated against based on a mental health condition!
Example: People with mental illnesses can experience discrimination in the workplace, education, housing, and healthcare.

Please share your tips or suggestions on ways to stop mental health stigma. By sharing the voices of those in need, we move closer to a world where those who need help no longer fear reaching out.

National Preparedness Month

Posted on September 10, 2014 by Angel Blair

September marks the observance of National Preparedness Month, a time when individuals are encouraged to make safety plans and preparations in case of emergencies, such as natural disasters, for the protection of themselves and family members.

With the atypical weather conditions experienced throughout different parts of the country this year especially, like the harsh winter months and peculiar storms, it is important to have emergency plans in place to prepare for such conditions. Discussing strategies with your family members or neighbors can help to increase cohesiveness and coordination when planning for emergency situations. Individuals with disabilities should develop strategies that will accommodate personal needs in case of an emergency as well, including how to move within the household if the power were to go out and safe exit strategies if you need to evacuate the home.

Websites like the Centers for Disease Control and Prevention and ready.gov provide information and materials for individuals to make plans and build safety kits for emergency preparedness. Here are some additional tips to consider when creating emergency plans:

Develop a plan that is accommodating for everyone’s needs in the household. If someone has a disability, try to consider and incorporate those needs into emergency plans and evacuation strategies.

Ensure all household members are aware of the plans and what their role is in implementing them.

Stay informed about emergency preparedness by checking media and news sources often.

Increasing awareness of how to protect yourself and the ones you care for in an emergency can aid in making thoughtful and careful decisions in unexpected situations. Take this time to learn more about National Preparedness Month and educate others as well!

My Silent Hero

Posted on August 20, 2014 by MSAA

By: Sheryl Skutelsky

After years of having every part of my body in pain at various times through my twenties, I’ll never forget the day in October 2001 when I finally heard those words, “You have multiple sclerosis.” I didn’t yet really know what those words meant, but I was relieved to finally have a name for what doctors had been telling me for years was just stress.

I went home that day to look MS up on the computer, and I have never stopped learning. Knowledge is power, and I truly believe that my attitude has a great deal to do with how I live my life with MS.

I was very excited when I was offered the opportunity to write for MSAA because it meant I could reach more people with the valuable lessons that I’ve learned over the years.

I’ve been blogging about MS now for years, having covered topics that range from explaining what MS is all about to how to deal with summer heat. However, I have never written about the person that has been my rock through all my ups and downs.

My partner not only has to imagine what it’s like each day for me to deal with pins and needles, numbness, shooting pain, aching, dizziness, nausea, and overwhelming fatigue, but she also has to live with the same uncertainty of waking up each day and not knowing if we can do the things that we had planned. She is the only one that truly understands how I can look so good on the outside and feel so miserable on the inside. She gets it when I have to cancel plans because I did too much the day before.

When we met, I was relatively healthy. She did ask me what hurt every day. It got to the point where she asked me if my left earlobe hurt because she was just trying to find some part of me that didn’t hurt, but she didn’t sign up for a chronic disease. That news came as a shock to both of us.

Thanks to MS, I’ve learned to truly take one day at a time. I wake up grateful for each day that I can walk, but I also wake up grateful that I have someone in my life that will stand by me no matter what. It would do us all good if we remembered to let our significant others know how much we appreciate all that they have done for us by sharing in living with the uncertainty of life with MS.

*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.

Multiple Sclerosis Around the World

Posted on August 6, 2014 by Angel Blair

Looking at MS around the world, the Multiple Sclerosis International Federation is an international organization offering support and advocacy for those with MS throughout different countries. Their initiatives include communicating information about MS to a global audience, especially where there is little MS support. They also work and coordinate with other MS organizations to advocate for research efforts and campaigns to help those living with MS, including World MS Day each year. They have several member organizations throughout different countries, and act as an international hub of MS information and support.

With MS affecting individuals throughout the world, it is imperative to have an international resource in place to turn to when information, support, and advocacy are needed. Through publications, newsletters, and weekly MS research updates, the MSIF offers those with MS increased awareness of the disease and its impacts. The group provides an opportunity for those countries without much MS awareness to receive additional support and resources.

As MS continues to be researched and investigated across the world in regards to its potential origin and treatments, the MSIF stands as a pioneering network to keep those in MS communities around the world apprise of new developments.

For more information about the MSIF, visit their website.

MSAA Attends 2014 Consortium of Multiple Sclerosis Centers

Posted on June 2, 2014 by MSAA

Several members of the MSAA team traveled down to Dallas, Texas last week for the 2014 meeting of the Consortium of MS Centers (CMSC). The meeting had approximately 2,000 registered participants (the largest CMSC ever) ranging from doctors, nurses and researchers, to nonprofit organizations like MSAA.

MSAA set up our booth and reached out to attendees to try and ensure that providers are aware of our services and can refer to them as needed.

Some of the partners MSAA works with were also in attendance, including the vendors who work with MSAA on our Cooling program:

The annual CMSC meeting is one of the best opportunities for education, sharing, and collaboration for professionals who serve the MS community. MSAA staff attended a number of helpful classes, lectures, and interactive sessions on everything from research and study updates related to causes and treatments to efforts to improve quality of life and comprehensive MS care.

Stay tuned to MSAA for more information and knowledge learned at the 2014 CMSC.

Spread Some Sunshine For MS Awareness Month

Posted on March 17, 2014 by MSAA

March is half over and MS Awareness month is in full swing. We’ve come a long way in helping people understand the difference between multiple sclerosis (MS) and the disease known for “Jerry’s Kids.” I have to admit, I even made that mistake when I was first diagnosed.

Lying there in the hospital bed, feeling vulnerable in the one-size-fits-nobody cotton gown, I listened as my doctor broke the news in his most apologetic tone.

“I can’t say for sure, but it’s possible you have multiple sclerosis,” he stammered.

“You mean like that disease with the telethon?” I asked.

“No, you’re confusing MS with muscular dystrophy,” he corrected me. But that was all I got. No literature or other helpful information that might explain it further.

So here I am, fifteen years later, reflecting on what has changed. Granted, it seems less folks are making that mistake, but we’re a far cry from the level of “awareness” needed to make MS a household word. Wouldn’t it be nice to see medical breakthroughs in MS as part of your typical nightly news program?

Maybe all MS needs is a good PR campaign. That’s where we who are living with it come in, sharing the importance of our cause and getting folks to pay attention.

But how do we go about affecting this change? How can you and I raise awareness so that the words “multiple sclerosis” roll easily off the tongues of healthy people? It takes communication on every level and that should start at home.

Don’t be overwhelmed thinking you have to have a grand plan or platform, or that your voice doesn’t matter. Every voice matters! And I’ve got a simple plan for spreading MS Awareness:

Learn: You can’t explain MS to someone else until you are comfortable that you, yourself know what it is. So learn all you can.
Simplify: If you’re trying to explain how MS affects you, do it with analogies. I always compare my nervous system to an old lamp and MS has caused its cord to fray. My brain flickers just like the light when the signals can’t get through. Depending on where it’s frayed, my symptoms will vary.
Express yourself: Don’t think you have to be a writer, speaker, or artist to share what you know about MS. Use your own unique talents. If you like to bake, make cookies with “MS” written in frosting for a conversation starter. Maybe you’re into woodworking, so make a wallhanging or mailbox with an MS theme. Like to sew or make jewelry? Design your own MS emblems and add them to your ensemble in order to spark interest. Everyone has some gift to give to the MS awareness campaign.
Get Social: The internet is a tool of empowerment. Share awareness graphics with your friends on Facebook. Tweet links to Awareness fundraisers and events on Twitter. Create a video to help the newly diagnosed understand it’s not the end of the world. Remember to use hashtag #MSAwareness when posting on social media.
Reach out: Mother Teresa knew what she was talking about when she said “Never worry about numbers. Help one person at a time and always start with the person nearest you.” That’s the best advice I ever heard, after all, she made a difference, right? Start with family and friends and before you know it, you are telling the produce manager at the grocery store all about MS.

Think of awareness as sunshine. Every time we spread our MS message, sharing the need for research and funding, we shine a little more light on our cause–and our future looks that much brighter.

References:

http://www.healthline.com/health/multiple-sclerosis/youve-got-this

Credit:

“Hope for a Cure” illustration by Jeri Burtchell

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