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RealTalk MS
Episode 414: Finding Peace in the Midst of Uncertainty with Andrea Arzt, LCSW, MSCS
00:33:45
Living with MS has always meant living with uncertainty. Left unchecked, that uncertainty can lead to anxiety, which can make your MS symptoms feel worse. This week, Licensed Clinical Social Worker, Andrea Arzt, joins me to share tips...
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- [00:01]
A
I'm john strum and this is real talk, mississippi.
- [00:18]
It's August 5th and we have a lot to talk about. If you're living in the United States or almost anywhere else in the world, there's been no shortage of uncertainty over the past several months. That uncertainty often leads to anxiety, and anxiety can make your Ms. Symptoms worse. Licensed social worker Andrea Arst is joining me today with tips and strategies for finding peace in the midst of uncertainty. But before we get to my conversation with Andrea, there are a couple of other difference makers in the Ms. Community who I'd like to introduce you to.
- [00:59]
Most of you know Sylvia Lowry as the woman who founded the National Mississippi Society in the United States in 1946. What many people don't know is that in 1967, Ms. Lowry went on to become the co founder of the Ms. International federation. Just over six months ago, Dr. Lydia Makarov stepped into the role of CEO at the Ms. International Federation. And in a moment you'll meet Dr. Makaroff and hear about some of the work the MSIF is involved in on behalf of the global Ms. Community.
- [01:36]
A little more than six months ago, Dr. Lydia Makaroff was named Chief Executive Officer of the Ms. International Federation. And it's my pleasure to welcome you to the podcast, Dr. Makaroff.
- [01:49]
B
Thank you so much, John. It's such an honor to be here.
- [01:51]
C
Thank you.
- [01:52]
A
Although the Ms. International Federation was co founded in 1967 by Sylvia Lowrey, the same woman who in 1946 founded the National Ms. Society in the United States, we may have some listeners who aren't familiar with the Ms. International Federation. Can you explain what it is?
- [02:12]
B
Thanks, John. Yes, the MSIF is a unique organization with a global mission to bring the world together with urgency to improve the quality of life and well being of Everybody affected by Ms. And to and Ms. Forever.
- [02:25]
A
It's interesting that more than 50 years ago, Sylvia Lowry recognized that multiple sclerosis didn't respect any country's borders. It. It impacts people throughout the world and that somehow coordinating the effort to treat and ultimately cure Ms. Was best served by making it a global initiative. Which in 1967 was pretty radical thinking, wasn't it?
- [02:50]
B
Yeah, absolutely. I think she was really groundbreaking in her understanding that really it takes a village and if we want to go far, we need to go far together and really to decentralize the Ms. Movement and to make sure that everyone affected by ms, no matter where they live, is part of the movement.
- [03:12]
A
So if we can Fast forward from 1967 to 2025. How many Ms. Societies are members of the Ms. International Federation?
- [03:21]
B
Today we have 47 members in 45 countries and we also have a non member network as well, reaching around the globe.
- [03:31]
A
You know, so much of the news about Ms. Research and treatment often comes out of more industrialized Western countries. And I think as a result, many people tend to think of things like Ms. Patient care and as being fairly consistent everywhere in the world. But that's not really an accurate assessment when it comes to Ms. Care. What kinds of disparities exist in other parts of the world?
- [04:00]
B
So through the Atlas of Ms. We know, for example, then 2/3 of people living with Ms. Are living in a country that don't even have guidelines for Ms. So that is one disparity that we see around the world when we're talking about Ms. Treatment and care.
- [04:15]
A
You have a somewhat unique opportunity to interact with the global Ms. Community. What do you see as the biggest or perhaps most widely held misconception about multiple sclerosis?
- [04:29]
B
Yes, it's been such an honor to meet so many people affected by Ms. Around the world. And one thing I really appreciate is the global networking meeting that's held for Ms. Members in October every year where I get to meet Ms. Organizations and people working, working for Ms. Organizations and people affected by Ms. I think one of the misconceptions is that everyone just immediately ends up in a wheelchair and that there's no hope. And what I've learned over the past six months is that Ms. Affects everyone uniquely and we are lucky to be able to see the beginnings of new treatments as well as an emphasis on rehabilitation and diet and wellness. That means that there is a lot more hope for people affected by Ms. Than ever before.
- [05:23]
A
Well, a moment ago I heard you mention the Atlas and I'm hoping you can tell us about some of the work that the MSIF is involved in.
- [05:32]
B
Yes. So the Atlas is run by two of my amazing colleagues, Rachel and Ann, and they put a lot of work into putting the numbers behind some of the statistics that we see. So in 2022 we released released a estimate that there are 2.9 million people around the world living with Ms. And this year we're also taking a close look at diagnostics as well to find out what sort of diagnostic tests people around the world have access to as well. And we also see disparities there where there are very few countries where everyone has access to the right sort of diagnostic tests.
- [06:11]
A
Can you tell us about other projects MSIF is involved in?
- [06:16]
B
Yes, we're involved in. So many projects, and it's just really inspirational to hear from my colleagues who are working on so many of these. So, for example, there is the Wellness Practices and Complementary Therapies guide which has just been released, which looks at three main categories of these practices, evidence based practices that work, practices that we're not sure about, and practices that are potentially harmful as well, and with useful checklists as well. So this is one way that we can encourage more self management and self care directly for people affected by Ms. Another one of my favorite projects is the World Ms. Day that happens on the 30th of May each year where we really galvanize the entire global community to raise awareness and campaign for better access to diagnosis and care.
- [07:07]
A
Well, I'm happy to say if you're a regular listener of this podcast, you know all about all of those projects. As a matter of fact, it's something we talk about as soon as new information gets released. I'm curious, how does the Ms. International Federation integrate the voices of people affected by Ms. Into its work?
- [07:30]
B
Yes, absolutely. And so this is a passion of mine because MSIF cannot be the global voice of people affected by Ms. If we're not integrating the voice of people with Ms. And making sure they have a seat at the table. So we encourage, and we have many people affected by living with Ms. On our board. We also have our people affected by Ms. Expert group, and we also make sure to integrate people with Ms. Into as many of our expert groups, working groups and advisory boards as possible.
- [08:05]
A
So I have to ask, after a little more than six months on the job now, what has surprised you the most?
- [08:13]
B
Well, I think the warmth and the dedication of all of the volunteers around the world has really surprised me. So many of the Ms. Organizations could not survive. I would say none of the organizations, the Ms. Organizations, could survive without volunteers. From volunteer board members to volunteer fundraisers, volunteer people who are just willing to share their story and share their journey. We couldn't do what we do without so many people donating their time and expertise. And that's been a wonderful surprise.
- [08:52]
A
So what possible new initiatives or updates on existing initiatives might we be hearing about from the MSIF in the coming months?
- [09:01]
B
So it's July as we speak, so in the northern hemisphere we're going into summer and in the southern hemisphere we're going into winter. We've got ektrums coming up in the coming months and so we should hear a lot of new announcements there and we hope to work with our member organizations as well to translate what those mean. As well to translate what those new scientific announcements mean for people living with Ms. And Ms. Organizations. We're also looking to see the new diagnostic criteria, also known as the McDonald criteria, to be published in the next three months or so. And once again, we'll be supporting our Ms. Organizations and people affected by Ms. What do these new diagnostic criteria mean for you and what does it mean for low resource organizations? Then in October we've got our global networking meeting in London as well where we'll be convening the, you know, a large group of Ms. Organizations from around the world to come and talk about what what's important on the ground, what matters to affected by ms, what is affecting Ms. Organizations and what can we do as a global movement to make a change.
- [10:20]
A
Well, Dr. Lydia Makarov, I want to thank you for all you and the Ms. International Federation do to improve Ms. Care, support Ms. Research and raise Ms. Awareness around the world. Thanks so much for talking with me today.
- [10:36]
B
You are most welcome John. It is such an honor. I'm a longtime listener, first time speaker, so thank you so much.
- [10:44]
A
Earlier this summer, while I was attending the International Progressive Ms. Alliance Digital Tools Workshop, I had an opportunity to reconnect with my friend Marie Vaillant. Marie lives with Ms. And she's not only a member of the International Progressive Ms. Alliance People Affected by Ms. Engagement Coordination Team, but Marie is also a member of the Alliance Scientific Steering Committee. Marie's husband, Gordon Keith is a talented artist who has discovered a way to combine his art with philanthropy in support of Ms. Canada. In a moment you'll meet artist Gordon Keith.
- [11:26]
Gordon Keith is an artist, a graphic designer and philanthropist. And as we're talking today, I'm paging through a truly beautiful book entitled A Life in Paint the Paintings of Gordon J. Keith. Welcome to the podcast, Gordon.
- [11:42]
C
Thank you, John. So glad to be here.
- [11:45]
A
We're going to get to your Life in Paint in just a moment, but first I want to talk about this stunning book that tells the story of your journey as an artist and showcases Your work in 116High quality full color pages. I often remind my listeners that when I'm thinking about people to invite onto the podcast, I look for people who I call difference makers. Sometimes it's a world class researcher, sometimes it's an Ms. Specialist, and today, well, today it's you. Because the proceeds from the sale of this book are going to support Ms. Research. So thank you for choosing to use your art as a fundraising vehicle for Ms. Research. In the spirit of full disclosure, I'll Mention that your wife, Marie Vaillant lives with Ms. And she's not only a member of the International Progressive Ms. Alliance, people affected by Ms. Engagement Coordination Team, but Marie is also a member of the Alliance Scientific Steering Committee. Reading about you in this book, I discovered that you were first drawn to art at the age of five at the hands of a woman described as, and I'm quoting now, an elegant Hungarian bracelet wearing, cigarette smoking, long skirted, aristocratic bohemian artist, which I, I have to say is quite a beginning. Can you tell, tell me about that?
- [13:15]
C
It really was that John. She really was.
- [13:18]
A
And, and what was that experience at five?
- [13:21]
C
Well, was quite vivid for me actually. And I remember just being intrigued by the smell of the oil paint and probably the fact that she was chain smoking which was sort of unusual for me to see at the age of five.
- [13:41]
And then of course she did a portrait of myself. She did one of my brother Brian and she did one of my mother, which my mother hated the portrait and I think she threw it out eventually somewhere along the line. And then she also did a ceramic box bust of my older brother Ronald. And yeah, so it was quite an introduction. I still have the painting she did of me and it is actually in the book.
- [14:09]
A
How long have you been painting now?
- [14:12]
C
I'd say I probably got into it at about the age of 14 when I went to high school. There was a commercial art program and I think I took art as a, as an option. And then in Canada we had a grade 13 for many years and so I took, instead of taking the normal arts and science program for grade 13, I took a special commercial art program which was only offered in one school in the city at the time. That's the city of Ottawa, Canada.
- [14:52]
A
By the way, what makes you get up in the morning still wanting to paint?
- [14:58]
C
Well, it's just something that's always intrigued me. All my life I've been involved in not only painting, but graphic design and advertising and. But there's always been a creative bent and painting just fascinates me. Not just, not only painting myself, but also studying some of the great masters of Impressionism and, and the Renaissance and of course Rembrandt, who I think was just an amazing painter. But all of those things really intrigued me.
- [15:35]
A
Well, I'm glad you brought up your study of some of the masters. Getting back to the book for a moment. It chronicles your travels and many of the key moments in your life by featuring your paintings reflecting various travel destinations and those important moments. And one of the things that I was taken by is the variety of styles you're able to employ so successfully. When I typically look at an artist's portfolio, I rarely see such a wide variety of diverse styles. So how did that happen?
- [16:11]
C
I. I never really developed a style per se. I always found I was experimenting with different ideas and different styles and, and. But then when I look back on all the paintings that I've done in my life, I do see a cohesion and an actual kind of flow to. To what I've been doing. And of course, there's always another painting to be done tomorrow, so, you know.
- [16:43]
A
I see that same flow as well. As someone whose spouse lived with progressive ms, I don't want to miss the opportunity to ask you about Marie. Were you two already together when she was diagnosed with MS?
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C
We were. We met, excuse me, in 1994, and Marie was diagnosed, I think, two years later in 1996. And, you know, we've had our challenges over the years, but Marie has learned to live with it quite well.
- [17:17]
A
So if I can take you back to 1996 for a moment, what were your initial thoughts when Marie was diagnosed?
- [17:25]
C
I think we were both in shock. And of course, the Internet wasn't at. At the level that it's at now, so we, we didn't really know where to get more information. And someone pointed us to the local Ms. Society and they had information nights. I think it was two nights a month or something like that. And we went. And that was very helpful because it took some of the questions away and some of the. The mystery away that we were concerned about. And of course, that was Marie's first involvement with the Ms. Society, and she went on to. To volunteer for the local chapter for many years.
- [18:12]
A
Do you consider yourself Marie's care partner?
- [18:17]
C
We. We usually use the words personal assistant as in a joking way, but Marie is still very independent and still.
- [18:29]
Gets around. She still drives and goes to her club five days a week and works out to keep her core strong. And so I wouldn't. I. I don't think we use the word caregiver yet, let's put it that way.
- [18:46]
A
But go ahead and assume for a moment that someone, maybe someone who's listening to this conversation, has recently been diagnosed with Ms. And one of the things they're wondering about is how that Ms. Diagnosis may affect their relationship with their significant other. What advice would you share with them and their partner?
- [19:09]
C
I think I would get as much information as you can about, about Ms. From credible sources. You know, there's so much stuff on the Internet now And.
- [19:25]
There'S certainly some theories and treatments that can be debunked. But I would definitely go to sources like the Ms. Society of Canada or the Ms. Society in the United States that are credible sources of information.
- [19:46]
A
Well, getting back to this incredible book, I've mentioned that proceeds are going to support Ms. Research and Ms. Canada, which is the name of the Ms. Society in Canada. What?
- [19:59]
C
Right.
- [19:59]
A
How can people find out more about the book and order a copy?
- [20:04]
C
Okay, well, the. The website to go to is24212.com and you can find out all about the book about the. You can donate to the Ms. Society, you can purchase a book or. The other kind of fun thing that's going on is I'm going to be doing a calendar in the fall. And in the meantime, I'm getting people to vote month by month for which painting they want to go in the calendar. So for instance, for the month of July, there's two paintings. One's called Marie's Garden and the other is called Backyard Summer. So you can go to 24 to 12.com and vote for which one you would like to see in the calendar. So by mid September, the voting will all be done. And we're also using it as a way to reach out to people and.
- [21:02]
Raise awareness about Ms. As well. So we're doing a lot of Facebook posts, but for each post that we talk about the calendar, we talk about something about Ms. As well.
- [21:15]
A
I just want to reconfirm that website again. It is 2 4.
- [21:24]
C
24 to12.com you're absolutely right, Gordon.
- [21:28]
A
Keith, I want to thank you for the difference you're making through your art and your philanthropy. And thanks so much for talking with me today.
- [21:36]
C
All right, and thank you for having me, John.
- [21:38]
A
It's been a pleasure for so many reasons that we won't revisit right now. 2025 has been crazy. And even that may be a pretty euphemistic description of everything taking place in the world around us Now. Living with Ms. Has always meant living with uncertainty. And when you add in some of the more recent craziness, it becomes easy to see how some people are feeling more anxious than ever before. In turn, that anxiety can cause your Ms. Symptoms to feel worse. Andrea Arst is a licensed social worker who has extensive experience working with the Ms. Population. And Andrea is joining me to help us find peace of mind in what for many are very stressful times. In a moment, we'll meet my guest, Andrea Arst.
- [22:31]
If you're living in the United States and Perhaps even if you're not, there's been no shortage of uncertainty over the past few weeks and months. Unfortunately, uncertainty can often lead to anxiety, and those feelings of anxiety can sometimes make your Ms. Symptoms worse. So how can you practice good self care and find peace in these uncertain times? That recipe includes acknowledging and processing your emotions in a healthy way, staying focused on the things you can control, and connecting with others. Finding peace in uncertain times means leaning into your personal resilience. Joining me to discuss how you can find peace in uncertain times is Andrea Arts. Andrea is a licensed social worker who has extensive experience working with people living with Ms. Welcome to the podcast, Andrea.
- [23:26]
D
Oh, thank you, John. I'm so glad to be here. Thank you for having me.
- [23:30]
A
So how do you define navigating uncertainty? What does that mean?
- [23:35]
D
Navigating uncertainty means moving through situations where there's a lack of predictability or we are uncertain about the outcomes. It involves adapting to changing circumstances, accepting the unknown, and making decisions when complete information is unavailable. Essentially, it's about finding a way forward when things aren't clear or guaranteed.
- [24:01]
A
You know, it seems like uncertainty is baked into Ms. It's such an unpredictable disease. How can someone living with Ms. Stay grounded through those uncertain periods in their lives?
- [24:16]
D
Well, diagnosis of Ms. Is one of those things for sure. Most of us did not expect. And having Ms. Creates uncertainty because we know that we cannot predict the exact course that the disease will take for each person. Of course that's anxiety provoking, but there are things someone with Ms. Can do to reduce the anxiety and move forward. Let me just say a couple things about some of them. The first thing is to acknowledge your feelings and your fears. Allow yourself to feel these emotions without judgment, trying to pretend they're not there, research and experience has shown, just makes the feelings worse and stops you from taking positive action. Think about what are the specific things you're worried about? Is it a particular symptom? Ongoing increasing difficulties with walking or vision. Fear of losing your job? Your worries about your children. Sort through those fears that are specific and those that are more general. Think about your questions and concerns and try to problem solve for those you can control and that those you can't.
- [25:24]
A
These feelings of uncertainty aren't limited to the person who's living with Ms. Their caregiver may also be anxious about their loved one's health status or the care their loved ones may need in the future. How can caregivers manage their fear when their loved one's future is uncertain?
- [25:44]
D
One of the first things for a caregiver is to know that they're not alone in dealing with these fears. So again, as always, talking about them is the first step which mentionable is manageable. And that's a key piece, I think for all people to just know. And that includes it with about Ms. Don't be afraid to talk to your mother or your loved one about your concerns and see if you can problem solve together. Maybe some of the things you as a care partner are fearful of is not the same as your loved one. And get resources and supports about you and around you to help problem solve together and figure out what you can control and what you can plan for for the future.
- [26:35]
A
Sometimes uncertainty can create opportunities for personal growth or creativity. How does that work?
- [26:42]
D
I think when we're thinking about uncertainty, most of us tend to think about the things we fear most and what we will lose. But sometimes we forget that that gives us an opportunity to look at things in life in a new way. It may make us think about our priorities differently. It may help us think about what our values are and what truly is important to us. And it may make us rethink some of the activities that we've been involved in. And it may make us think about new ones that we hadn't really thought of before. So it may give us the opportunity to be invol with activities, art learning that we hadn't done in the past. It may give us an opportunity to meet new people and be in the world in a different way. It also gives us an opportunity to learn about ourselves in a different way. And that's never a bad thing.
- [27:41]
A
I believe that whatever the situation is that may lie in front of us, it becomes much more manageable when you have the right tools in your toolkit. So are there any tools or frameworks to adopt when someone is dealing with uncertainty?
- [27:56]
D
Well, definitely, and there are different tools that work for different people. But for many, scenario planning, taking what you do know and what you can control, thinking about what the possible contingencies, what might happen if different scenarios happen, and trying to plan for them.
- [28:20]
B
As.
- [28:20]
D
Much as possible and prepare for them and do go a long way in terms of quelling anxiety. The more prepared you are for what you can know or it might be possible is really important. Some people like to use journaling as a place both to write their fears and just so that they can know more about them and understand what they're about, write their goals.
- [28:48]
Write those down so that you can really think through what is important, what isn't important. A journal looking at what happens in each day can also include what was successful in that day, what went well, what are you grateful for. So it's also a good way to not only focus, not focus so much on the negative, but also remind you of the positive that's happening in your life. Sometimes we get so focused on what's going to happen in the future that we forget to be where we are right now and be present in the moment, be present with the people that we care about, be present in the activities that we're doing right now. And journaling, as well as mindfulness, stress management techniques, all of those can help us be calmer now and focus not just on our fears, but also on what's positive in our life and what's positive to come.
- [29:50]
A
We've been discussing uncertainty, so maybe it's a good time to ask you to explain the difference between being uncertain and being unprepared.
- [30:00]
D
Well, being uncertain really is related to what we've been talking about. We don't know what the future will bring. No one can know that. And particularly with ms, we cannot know. Being unprepared though, means that we're not doing what we can to find the resources, the information and change the things that we can control now that will give us the best opportunity to deal with whatever the future brings, even if we can't know it. So being prepared is actually one of the best ways of dealing with what we can't know and the uncertainties of the future.
- [30:42]
A
So what are the most important things someone living with Ms. Should keep in mind when they're facing uncertain times?
- [30:50]
D
Well, I think to know that we all deal with uncertainty, we're all learning and we can learn to build skills and resilience to deal with changes that come with Ms. And with life and that that's important. Focus on what you do know and can change and prepare for as many contingencies as you can. Also know you cannot know them all. And that's okay. It's not a lacking in you. It's something that we all have to learn what we can control and what we can't. Understand your strengths and that you are stronger than you think already use techniques like mindfulness, gratitude journals and importantly your support systems to help you stay positive and enjoy life in the here and now. And know that managing life and Ms. Uncertainties takes both working with your strengths but also being flexible and that these are learnings and skills that you really can build over time and are within your reach.
- [31:54]
A
Andrea Arst, I want to thank you for all you do to improve the quality of life for people living with Ms. And thanks so much for talking with me today.
- [32:02]
D
Oh, thank you for having me, John.
- [32:05]
A
That's going to wrap up this episode of Real Talk Ms. Real Talk Ms. Is powered by the National Ms. Society, and you can share this episode of the podcast by letting your friends or family members know that all they have to do is point their web browser at realtalkms.com/414. You'll find that link in today's show notes, so you can easily copy and paste it right into an email or a text. I hope you'll join me for next week's episode of Real Talk Ms. When it's all about the money. First, I'll be talking with Beth Scott, the director of case management at the Patient Advocate Foundation. Beth is going to walk us through work incentive programs that allow people to continue working while they're receiving Social Security disability benefits. I'll also be talking with Paula Cole. Paula lives with ms, and she and I will be discussing strategies you can use to plan your financial future when you're living with the uncertainties of Ms. I'm John Strum. Thanks for listening. Stay safe and make healthy choices.
- [33:20]
C
Sam.