Thankfulness and Kindness

Posted on November 24, 2021 by MSAA

By Gina Ross Murdoch

In years past, we would enter November with thoughts about upcoming family gatherings, parties, crowded shopping malls, and many other group activities. This year, we continue to view these activities with uncertainty and cautiousness for our safety. We are somewhat there in many areas but still not fully “back to normal.” The holiday season looks different but this time of togetherness, family, and helping others is as strong as ever.

So, what does the “season of giving” and thankfulness look like in our world today? It looks like gifts of kindness, large and small, as it has always been. It looks like neighbors helping neighbors and, hopefully, being kind to yourself as well. In our quickly changing and virtual world, the power of personal connections and family are more important now than ever.

A small act of kindness such as taking someone to a holiday lunch may now change to dropping off a special goody to someone who cannot go to that favorite restaurant. Kindness may be in the form of using your newfound crafty talent to make a personal gift and sending a surprise through the mail. It may also translate to giving yourself the small kindness of patience and understanding as we continue to navigate the current climate. Whatever your kindness may be, sharing of yourself and your talents will inevitably result in a thankful recipient. We all can make a difference, and all have the ability to make someone’s today just a little bit brighter. Even if we are still living in a somewhat socially distant world, connection to others remains essential.

Expressions of kindness continue to be seen through supportive groups that are important to you, such as the Multiple Sclerosis Association of America and the entire MS community. What may be a small act of kindness in your eyes can be a life-changing event in someone else’s existence. We often receive heartwarming notes of appreciation from those who have received a cooling vest or walker, explaining that these free services from MSAA have vastly impacted their lives. A walker may be the one thing needed to help a parent escort their daughter down the aisle, or a cooling vest could make the difference in allowing a grandparent to see their grandchild play baseball. These are just a few examples of how the power of generosity can improve a single life.

Throughout these challenging times, MSAA is thankful that we have maintained our Cooling, Equipment, and MRI programs as well as provided a wide variety of educational programs about COVID-19 and MS, the importance of mental and emotional wellness, and have continued to raise awareness about how MS impacts communities of color. Each day, MSAA receives many requests for support and information. Addressing those needs and being there for everyone impacted by MS is why we exist. MSAA appreciates the incredible support we have received in the past and we continue to rely on that support to be there for the MS community in the future.

Your acts of kindness create a significant impact. We rely on each other for support and compassion, as well as guidance, laughter, hope, and help. MSAA is thankful for the many people who continue to provide for our mission – you are critically important to Improving Lives Today. Wishing you a wonderful holiday!

Give Thanks

Image of lantern surrounded by gourds.

*Gina Ross Murdoch is a seasoned executive in non-profit management and has served as MSAA’s President and CEO since 2016. Her career includes leadership positions with chapters of the Leukemia and Lymphoma Society as well as the American Diabetes Association. Earlier, she spent 14 years overseeing development activities at a large chapter of the National Multiple Sclerosis Society, leading explosive growth initiatives and ground-breaking strategic projects. You can contact her at president@mymsaa.org to share your thoughts on how MSAA is improving lives today, or to learn how to get involved in our mission.

Mentally Preparing for the Holidays

Posted on November 15, 2021 by Selena Fisher

With the holiday season quickly approaching, you may find yourself spending a bit of time mentally preparing for the holidays. For a variety of reasons, holiday traditions such as family reunions, gift giving, and increased workload impact many of us. As you prepare for the holidays, I’d like to share some tips taken from NAMI (National Alliance on Mental Illness).

Here are 10 tips to assist you with mentally preparing for the holidays.

· Stick to normal routines as much as possible

· Be sure to get enough sleep and rest

· Take time for yourself, but don’t isolate yourself

· Eat and drink in moderation and don’t drink alcohol if you are feeling down

· Get exercise, even if it’s only taking a short walk

· Make a to-do list and keep things simple

· Set reasonable expectations and goals for holiday activities such as shopping, cooking, entertaining, attending parties or sending holiday cards

· Set a financial budget for holiday activities

· Listen to music

· Remember that holiday blues are short-term, so be patient and take things week by week and day by day

These 10 tips to help you mentally prepare for the holidays are both practical and doable. Implementing these tips can help you avoid feeling overwhelmed and enjoy the holidays with your friends and family.

Simplifying the Holidays

Posted on November 8, 2021 by Angel Blair

It’s hard to believe, but the holiday season is upon us once again. We’ve entered November and have already had some cooler temps across the country these days, helping to signify that special time of year. The holidays mean something different to everyone. And for some it means a period of stress and tension trying to plan and prepare for the festivities to come. But the holidays don’t have to encompass just tension and hard work. We can make things a little easier with some planning and prep ahead of time.

Make Lists

I am a huge proponent of making lists. They help keep us organized and help us to recall things that need to be done. Having lists written out gives you a better idea of what your tasks are and allows you to put things in order of priority. It’s also a great feeling being able to throw the list away once you’re done with it.

Keep it Simple

Sometimes less is more. During the holidays there’s already a lot going on, so why not simplify things where you can. Cooking for the holiday? Maybe focus on less side dishes or the abundance of dessert varieties. If gathering with others, go potluck for the meal. Have others prepare their favorite dish to bring to the occasion. And maybe even swap recipes with one another to make it more fun. If you’re able to, why not have a holiday meal or party catered? Or perhaps order your favorite takeout and gather with friends and family. Keeping it simple helps free up time to do other things you enjoy during the season.

Ask for Help

There is absolutely nothing wrong with asking for help, and at the holidays is no exception. Asking others to help plan and prepare meals, purchase goods, or clean and organize, can help you conserve energy and helps to maintain sanity during what can be a hectic time of year. Others may be very willing and eager to help, especially if they don’t have their own share of endless tasks to conquer. You can also pick and choose who you ask for support. You don’t have to take on everything alone.

This time of year can be truly wonderful and magical. It doesn’t have to look a certain way or cost lots of money. It’s about enjoying the spirit of the season, the joy, the lights, the hope. Be sure to carve out time to appreciate the special moments of the season. Nothing is or must be perfect. It can just be whatever it means to you.

Wishing everyone a safe and joyous holiday season!

Ask the Expert – COVID-19 and Flu Vaccines

Posted on November 1, 2021 by MSAA

Featuring Barry A. Hendin, MD
MSAA’s Chief Medical Officer

Question: For individuals with MS who are taking a disease-modifying therapy (DMT) and plan to get both a COVID-19 vaccine as well as a seasonal flu vaccine, do they need to wait a certain amount of time between taking their DMT and between receiving each vaccine?

Answer: We recommend vaccination for COVID-19 and for flu for most people with MS after appropriate discussion with your doctor or primary care provider. The risk of COVID-19, as well as the risk of becoming sick from the flu, generally outweigh any risks associated with vaccination. We also recommend continued safety precautions including masking, handwashing, and avoidance of large indoor gatherings.

You can take the flu vaccine and COVID-19 vaccine on the same day. Trying to time your vaccination and disease-modifying therapy (DMT) relates primarily to the initiation of immunosuppressive DMTs. With some of these therapies, timing may be considered in order to optimize the effect of the vaccination.

For Gilenya^® (fingolimod), Kesimpta^® (ofatumumab), Lemtrada^® (alemtuzumab), Mavenclad^® (cladribine), Mayzent^® (siponimod), Ocrevus™ (ocrelizumab), Ponvory™ (ponesimod), Rituxan® (rituximab), and Zeposia^® (ozanimod), it’s generally recommended that vaccination be initiated two to four weeks before starting therapy, when possible. When Ocrevus and the experimental MS-therapy Rituxan have already been started, optimal vaccination response appears to occur when vaccination is given approximately four weeks before the next infusion. However, such timing may be difficult, and therefore in many instances, vaccination can be performed when available.

In addition, the COVID-19 vaccine and most flu vaccines are non-live vaccinations, and as noted above, these should be performed at least two to four weeks before starting immunosuppressive therapies if possible. While we generally do not recommend live vaccinations to individuals with MS if they can be avoided, live vaccinations should be performed at least four to six weeks before initiation of immunosuppressive therapies.

Barry A. Hendin, MD, is a neurologist and Director of the Multiple Sclerosis Center of Arizona. He is also Director of the Multiple Sclerosis Clinic at Banner University Medical Center and Clinical Professor of Neurology at the University of Arizona Medical School.

Spooky Ice Cream Float

Posted on October 29, 2021 by Melissa Young

With Halloween in just a few days, we all need a little something to help us get in the spooky Halloween spirit.

This sweet treat is sure to be a hit for the young and old. It’s time to treat yourself to something delicious!

Happy Halloween!!!

Ingredients

1 cup red soda of choice
2 cups Vanilla Ice Cream
1/2 cup strawberry syrup
1 Can Whipped Cream
Spooky Halloween candy of choice, such as spiders, eye ball gum or vampire teeth

Instructions

Fill a cup 3/4 full of vanilla ice cream.
Slowly pour red soda over your ice cream.
Top with whipped cream and drizzle with strawberry syrup.
Add Halloween candy garnish.

A Letter from a Friend

Posted on October 20, 2021 by Selena Fisher

Dear friend,

I am sorry to learn of your recent MS diagnosis. My heart cannot truly grasp the emotions you must be experiencing. I imagine this new chapter of your life has been quite scary and frustrating for you. Please know that you have a community of advocates behind you cheering you on.

I have seen firsthand how an MS diagnosis can take you on a wild emotional roller coaster ride that you never asked to be on. My mother was diagnosed with MS back in 1996. Advances in research and educational information about MS were much different back then. She wasn’t told that every person’s MS journey is unique and can look totally different than someone else’s. As a family we had no idea that MS didn’t look the same for everyone who was diagnosed with it.

As you deal with being newly diagnosed, I’d like to share with you a few words of encouragement that I wish someone had given my mom.

Your story as an MS fighter is completely unique to you. Try to stay away from searching online and get your information from reliable sources such as your doctor’s office and MS organizations like this one I’m writing to you from. Also, staying positive is extremely important as you navigate through this uncharted territory. Remember, toxic emotions release neurotoxins into the body. Additionally, being mindful of the type of food you put in your body goes a long way. And Lastly, never be afraid to ask for help, and never be ashamed to advocate for yourself.

Friend, I want you to know that I think of you often and wish you all the best as you learn to live life as someone who has been newly diagnosed with MS. MSAA is rooting for you, cheering you on, and doing everything we can to make a positive impact in your life and on the entire MS community.

We are here for you, and we care about you.

Introducing a Roadmap for the Newly Diagnosed

Posted on October 18, 2021 by MSAA

Receiving news of an MS diagnosis can be intimidating. Overwhelming feelings and questioning where and how to begin your journey is normal. To address this need, MSAA is proud to present Roadmap for the Newly Diagnosed, a series of educational fact sheets to direct new members of the MS community to the most sought information after an MS diagnosis.

Each fact sheet is designed to help support you as you start out on your MS journey, and includes topics such as:

Understanding your diagnosis
Accepting your diagnosis
Making an informed decision on sharing this diagnosis with others
Building a healthcare team
Various terms and phrases used frequently in the MS community
Additional resources for the newly diagnosed

Feeling unsure of which fact sheet to begin with? Alongside the fact sheets is a short, informational questionnaire that can help guide you to the fact sheets you may want to review first!

Roadmap for the Newly Diagnosed Fact Sheets

While an MS diagnosis can be disconcerting and anxiety-provoking, there are resources available to support you. View the Roadmap for the Newly Diagnosed fact sheets now on MSAA’s website.

A New Diagnosis

Posted on October 13, 2021 by Angel Blair

Being diagnosed with MS can be a scary and unsure time. Lots of questions come up in the process and produce many thoughts centered around ‘what if, how, and when’ concerns. It can be overwhelming to learn about the disease too as there is so much information available on it. But there’s no right or wrong way to start educating yourself and others about the condition. And it’s important to know that it’s not something that can or has to be learned overnight. I always tell clients to have patience with themselves and to learn things as they’re comfortable doing so. Everyone is different and approaches things in their own way and time and that is ok. Below are some commonly asked questions that arise during this period for many diagnosed and their loved ones.

Can I still work?

This question comes up often as individuals consider what their future may look like with MS. It will depend upon one’s symptoms and course of their disease, but many people do continue working in some capacity with their diagnosis. Job accommodations can be asked for to help modify work schedules, tasks, and routines. Vocational Rehabilitation offices located in counties throughout the country work with individuals who need assistance in finding/maintaining employment that meets their needs when managing disease symptoms and issues. Having a conversation with the doctor can help with this too. Evaluating any changes that could be beneficial in the workplace or considering whether to and if it’s the appropriate time to retire or apply for some type of disability benefits can be discussed. It’s a very personal and tailored decision that comes with a lot of thought and input. Finding what’s right for you can take some time and deliberation so again have patience with this process too. More information about Employment and MS can be found on MSAA’s website here, https://mymsaa.org/publications/employment-and-ms/.

How do I disclose my diagnosis to others and help them understand the disease?

Again this is something that has no right or wrong answer or way of going about it. When and if you decide to disclose your MS diagnosis to others is a personal and unique decision and can be done in different ways. Letting others know right away or waiting to tell them is something each person decides based on differing factors. Like their relationships with their family and friends—whomever is in their support network, their employer and colleagues, etc. Some people will seek out and find comfort and support by telling others. While some who may not receive the same level of care from those they know may decide to wait or not disclose. For those who show interest and want to learn more about MS there are many outlets in which they can do so. Using reputable MS sources of information online, watching educational videos, listening to podcasts and webinars are just some ways. There are many avenues to educate about the disease. For the latter individuals who may not have that inner-circle support, there are several ways to find these support resources elsewhere.

Is there support available?

Yes! And in more ways than one. This is a question some folks ask hesitantly because they’re not sure if this is something they want to pursue right out of the gate. This is completely understandable. Every person’s experience with MS is different so sometimes it can be intimidating and uneasy to interact with others who may have a different course with their MS—different symptoms and varying degrees of disease progression. But this too can be something that’s uniquely approached. People can choose to connect with others as they find it necessary and feel comfortable in doing so. And if they make the decision to, there are many avenues to try. There are MS organizations, support groups, and online communities, including MSAA’s peer support forum My MSAA Community, that individuals can turn to for information and support.

One of the most crucial things to know is that you do not have to go through the diagnosis alone. Whether just diagnosed or years into its course, you don’t have to do it by yourself.

Signs of an MS Relapse

Posted on September 24, 2021 by Selena Fisher

When you have a relapse of multiple sclerosis (known as an exacerbation or flare-up), nerve signals are disrupted due to damage in the brain or spinal cord. As a result, you may experience new or returning symptoms. An MS relapse is defined as one lasting longer than 24 hours and occurring at least 30 days after any previous relapse. The duration, severity, and symptoms of relapses are all different. Here are a few common signs of an MS relapse.

Weakness

Normal messages from the brain to the body are disrupted when the protective covering of nerve fibers is damaged. When such signals are disturbed, the body stops working properly. Things you used to do easily, like opening a jar or turning a doorknob, can seem challenging during a relapse. You may be experiencing a relapse if you have sudden or worsening weakness that does not go away.

Vision Impairment

It’s possible that you’re starting to relapse if your eyesight is blurry or you’re seeing double. As the optic nerve becomes inflamed, some people lose their depth or color vision. Vision issues can be caused by taking a hot shower or bath, or by a viral infection like the flu, but they are just momentary and should go gone within a day.

Numbness

One of the most typical indicators of a recurrence in multiple sclerosis is numbness. It’s possible to lose so much feeling in your hands or other affected body parts that it’s difficult to use them. You might be unable to write or hold a cup of coffee. Please pay a visit to your doctor if your numbness is new or getting worse.

Cognitive Challenges

It’s aggravating to lose track of where you put your vehicle keys or to have to reread the same phrase several times simply to grasp the meaning. MS can impair your mind in a variety of ways, especially as the disease develops, affecting with memory, focus, language, and information processing. Any new difficulty thinking clearly or recalling past events could be a sign that you may be experiencing a relapse.

Feeling Dizzy

It’s uncomfortable to feel lightheaded or unstable on your feet, but it’s a frequent symptom of MS relapses. Damage to the areas of your brain that control balance causes dizziness. In the short term, there are medications that can help relieve the ‘room is spinning’ sensation, but if it lasts longer than a day, you may be experiencing an MS relapse.

If you suspect that you are experiencing an MS relapse, please reach out to your doctor to share your concerns. What you are experiencing could possibly be signs of an MS relapse.

Could This Be A Relapse?

Posted on September 13, 2021 by Angel Blair

On MSAA’s Helpline we often hear questions about MS relapses and what constitutes a relapse. Individuals ask whether the symptoms they are currently experiencing are just due to their MS or if an exacerbation of symptoms may be occurring. These are great questions that warrant valid and informative responses. The challenging piece of this, on the part of the healthcare professional at times, is helping to identify a true MS relapse from a pseudoexacerbation.

To be diagnosed with a true relapse, there must be certain factors at play. Individuals will either experience new symptoms or a worsening/recurrence of existing symptoms. These acute symptoms have to be present for at least 24-48 hours, without signs of other infections or fevers. This is where it can become tricky identifying a relapse from a pseudoexacerbation. Because with the latter, one can experience a temporary worsening of symptoms without inflammation or nerve damage occurring. A pseudo flare can result from illness/infection, fever, stress, heat sensitivity and other factors.

It’s important to discuss these differences with your healthcare team so that you can better communicate if you’re feeling any changes in your symptoms. Ask your doctor what signs you should look for if a relapse may be present, and when you should reach out to their office for assistance. Talk about ways a relapse could be treated and managed if it occurs. And make a plan for what you should do if you’re not able to get in touch with your doctor’s office. Some individuals will seek emergency medical services if needed when they’re experiencing worsening symptoms. So ask your doctor if/when you should seek care in this manner. Asking questions about MS relapses can be an integral part of your overall treatment plan and follow-up care.

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