Meet - Veronica Brodeur

Kentucky, USA

When were you diagnosed with MS? April 2012

What type of MS do you have? Relapsing-Remitting MS (RRMS)

#1: Can you tell us a little about your journey with MS. How did you feel about your initial diagnosis and how it has affected your life?

I think that I am a pretty boring MS patient. However, I am so happy to be here to share my story; because, I believe 100% that my purpose is to be a light to those who have Multiple Sclerosis or have been newly diagnosed.

Of course, I was scared when I was diagnosed in 2012, when numbness took over my whole body. As I look back, my first neurologist (who was wonderful by the way) said " I think you're going to be a mild case". I believe what he recognized was that I lived a healthy lifestyle. Although I now know, no one can predict what MS will bring, I hold on tight to those words and I appreciate his kindness. It was what my young self needed at the moment, when I thought I was doing everything right.

But, I know what triggered my MS flare...it was STRESS. I was working full-time as an eye technician, a mom of 2, and a Coast Guard member's spouse (who worked in the Gulf). We were having financial issues that were spiraling out of our control, and to add to that, we were living in that dang TX heat!

As of today, I have only ever had that one flare and recently some mild MRI changes. As a result, my doctors have taken me off of the painful injections and put me on a shorter less invasive treatment. So there's that..yay!! I believe that my overall well-being is enhanced by a combination of factors, including the support of my loving family and, most importantly, my faith in God. My hope is that I can inspire someone out there to know that MS can be uneventful, and that...All is not lost! I know there are many mild cases out there, but I promise to NEVER take that for granted. My wish is to pass along the hope that my doctor gave to me during the scariest time of my life, and I will. Thank you for reading this and allowing me to share. I look forward to knowing everyone's story and getting to know you all. For now, #KEEPMOVING, and God bless!!

#2: What MS symptoms do you have and how do you manage them on a daily basis?

I am very fortunate to have symptoms that I cannot entirely attribute to MS. Possibly the most recognizable symptom I have is fatigue.

#3: Who/What has been your most important support system?

My husband is my primary source of support, and even though my family is far away, they also play an essential role in my support system.

#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?

No.

#5: How do you stay positive and motivated in your daily life? What do you do for self-care?

Im not perfect, but I stay positive and motivated by exercising, eating healthy, and avoiding alcohol. These things are key most days. I also take some amazing supplements too.

#6: Your story and experiences with MS are incredibly valuable and can provide encouragement and motivation to others in the community. What words of advice or encouragement would you give to someone who is newly diagnosed with MS or going through a challenging time right now?

The best advice I can give is to know that each person's journey is so different. It's very possible that MS can be uneventful and stable...like mine. However, a great support system is also very important too.

#7: Have you started a business or mission related to MS? Can you tell us about it and what inspired you to take this step?

I haven't started a specific mission or business. But, as an eye care technician of 25 years, I have worked with doctors who are familiar with MS-related problems (like Optic neuritis) and they helped me find care. However, my diagnosis has led me onto a side path of helping people complement their entire well-being through affordable nontoxic products and supplements. It was a blessing that a friend showed me these things.

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Meet - Carla Cheyne-Rossouw

Western Cape, South Africa

When were you diagnosed with MS? April 2022

What type of MS do you have? Relapsing-Remitting MS (RRMS)

#1: Can you tell us a little about your journey with MS. How did you feel about your initial diagnosis and how it has affected your life?

On my husband's birthday, February 5th, 2022, I first noticed that something was wrong. Initially, I thought I had a heat stroke because, it was insanely hot that day. Meanwhile, my balance was being affected by MS and I didn't even know it. Despite being misdiagnosed by multiple doctors, who initially suspected it could be an ear infection, stroke, or flu, I continued to listen to my body and advocated for myself until the root cause was finally uncovered two months later.

Now, Let's take a moment to reflect back to 2020, the hard lockdown had just started. One afternoon after taking a nap, I woke and noticed a dark spot in the middle of my sight in my left eye. The spot continued to worsen, eventually resulting in complete blindness in that eye. I immediately sought medical attention; but, what I didn't realize at the time was that this was my first major warning sign of MS.

I remember the doctor saying "Don't google optic neuritis, because all you will read is "MS this and/or MS that". So I listened and didn't read up about it. He put eye drops in my left eye which made the pupil HUGE (refer to the pic) for the tests. My sight slowly returned after 3 weeks of very high doses of cortisone. So I carried on with my life. As a result though, I was super fat from the cortisone, I had to get glasses and my eyesight was weakened in my left eye.

My life was a whirlwind after that. It included multiple trips to the doctor for testing and such. In February 2022, I visited the doctor for balance and dizziness issues and was prescribed vertigo medication and cortisone. During my birthday month in March 2022, I remember getting my hair done and purchasing a new car. This should have been a happy and exciting time for me. However, I was overcome with worry and fear. Because, I received feedback from the doctor that I was simply not satisfied with and I knew I had to pursue this further. On March 10th, I went to an ENT specialist. He ran a few tests and said that he didn't see anything wrong, but recommended I that see a specialist physician ASAP. I was feeling super lousy by now and I could hardly walk straight or stand still without wanting to fall over. My speech was terrible too.

After visiting several physician offices, I was very concerned. Because,

no one helped me or even considered helping me. Needless to say, I was broken and exhausted. As I was headed home, my phone rang. One of the specialists phoned me back and as his receptionist explained my symptoms to him, he became really concerned! I was so grateful SOMEONE listened and took me seriously!! I was admitted to the hospital that afternoon. Later that night, the doctor came in to see me around 11p and took note of my speech and balance issues etc. He tested me for high blood pressure, and cholesterol, among other things. The doctor suspected a stroke and recommended an MRI scan, EKG, and Doppler test. But, unfortunately, due to my financial situation, I told him that I really could not afford the tests right then. Silly me, I told him that I would see if I can get the tests done cheaper elsewhere. What was I thinking? Because scans and tests are so ridiculously expensive.

Needless to say, I left the hospital on March 11th still feeling horrible. The following week, I went to see my family doctor for advice about the expensive scans. He referred me to go for a CT scan which was much cheaper. Long story short, they saw 3 images ( I don't know what ) and suspected that I had 3 small strokes. I was devastated. I did not know how this could happen to me. So off I went back home with a new diet to follow, meds, instructions to change some habits, and a new mindset!

On April Fools' Day (go figure), I went to see the doctor again for weakness on my right side and slurred speech, which was suspected to be a fourth mini-stroke. So my husband rushed me to the emergency room. I was so scared. It was the middle of COVID, so he couldn't go in with me and went home. I was alone, scared, worried, cold, and nauseated.

They ordered another CT scan, but no changes were seen. The doctor recommended another MRI. I agreed to it despite the cost. It boiled down to MONEY or HEALTH. So of course, I chose HEALTH. Once the results came, the doctor told me that he will be calling a neurologist to come in and talk to me...Red flag!! The neurologist showed up around 8p and confirmed that all the symptoms pointed to MS. The MRI results showed multiple lesions on my brain scans. He did a lumbar punch in the room that night; because, I wanted to go home the next morning. I was done with everything at this point. They could do just what they wanted at this stage. I just wanted to go home.

I went for a follow appointment with the Neurologist and he confirmed that I had Relapsing-Remitting Multiple Sclerosis. He recommended that I should start with an Ocrevus infusion every 6 months. My life has changed so much. Plans don't mean anything anymore. I don't make plans. I don't have goals. I just live day by day. I have my days where I have panic attacks just thinking about it. But overall most days I'm fine.

#2: What MS symptoms do you have and how do you manage them on a daily basis?

I am currently blessed to have very few MS symptoms! Fatigue is definitely the biggest one for me. I have to concentrate a little harder when walking. Especially when going up or down stairs. I also sleep when my body needs it.

#3: Who/What has been your most important support system?

My family has been an amazing source of support for me, I couldn't ask for anything better. I live in a very small, seaside village where a lot of the people who live here have become like family over the years. Especially since my diagnosis. Everyone has shown me so much love and support through it all from fundraising for my treatments, to bunches of flowers randomly delivered for no specific reason. Before I made my diagnosis public, I felt so alone and depressed. Ever since joining various MS support groups and being able to share my experiences publicly, it has helped me so much.

#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?

Fortunately, at this time I do not need or use any accessories.

#5: How do you stay positive and motivated in your daily life? What do you do for self-care?

I pray. I talk to God every day and I always look to him on my happiest and darkest days. I made friends with fellow MS warriors who have been fighting the fight for a long time. They keep me positive and motivated. I keep busy by working or watching TV/movie series. It's the quiet times when I start feeling anxious and scared. I should do better when it comes to self-care. I'm working on it. I have also learned to say no. Now more than ever. I guess MS has made me feel like I have a stronger excuse to say no...lol. I avoid situations that may cause me to feel uncomfortable or that are mentally and physically draining.

#6: Your story and experiences with MS are incredibly valuable and can provide encouragement and motivation to others in the community. What words of advice or encouragement would you give to someone who is newly diagnosed with MS or going through a challenging time right now?

Talk!!! If I knew then what I know now, I would have spoken up sooner! Words of encouragement, love, and support have made a world of difference. I initially felt like I was the only one with this illness; but as soon as, I spoke up and told my story, so many amazing things have happened! So many people with MS have reached out to me. A little girl in our village even wrote an essay about me! I have been in the local newspaper. There was a fundraiser charity walk that the locals arranged for me. My whole world has changed. We don't have to go through this alone.

#7: Have you started a business or mission related to MS? Can you tell us about it and what inspired you to take this step?

I have started a Facebook and Instagram page dedicated to my story " Carla Living With MS". This is where I share my story, the challenges I have had up until now, and my treatments going forward. I started " Carla Living with MS" because I struggled initially to find fellow MS'ers who I could talk to or get advice from. I wanted to put myself out there to spread awareness and be there for people who may feel like I felt.

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Meet - Leisa Wallace

Utah, USA

When were you diagnosed with MS? April 2019

What type of MS do you have? Relapsing-Remitting MS (RRMS)

#1: Can you tell us a little about your journey with MS. How did you feel about your initial diagnosis and how it has affected your life?

It started with tingling in my toes. By the time I walked into the ER a few hours later, the numbness had moved up my legs, arms, hands, face and I was having a hard time swallowing. By the time the MRI was done, I couldn't move my legs.

As the doctor explained that I had lesions all over my brain and down my spine, all I could focus on were the words..."Aggressive onset Multiple Sclerosis". He assured me they would stop the attack, but MS had no cure.

The next few months were a blur. With the help of physical therapy, I relearned how to walk, but the numbness never went away completely. The realization that my life had taken an unexpected turn was a lot. But I was determined to face it with courage and resilience, clinging to the hope that healing and solutions would be found.

#2: What MS symptoms do you have and how do you manage them on a daily basis?

Four years later, my body wavers between numbness, cramping, intense pins and needles, migraines, and extreme fatigue. But there is hope. I try and navigate my symptoms by thinking ahead of what might go wrong, and having a plan in place if it does. I keep a symptom and trigger tracker with solutions for each. So even though MS is unpredictable, I am as prepared as I can be.

#3: Who/What has been your most important support system?

I feel extremely lucky to have my support system. In the small town where I live, the rural hospital pharmacist, Dave has had MS for over 20 years. From day one, he visited me in my hospital bed and educated me about what MS was and how it affected him. I'll never forget his smile when he stood at the foot of my bed and told me, "I can't feel my feet but, life is good." It was from him that I knew I could navigate MS with hope and happiness. He was my friend with MS that I could ask ALL of my questions too.

#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?

I work really hard at being able to keep my mobility. But I still take a cane with me just in case I need extra support.

#5: How do you stay positive and motivated in your daily life? What do you do for self-care?

Over the years, I've learned so much about positivity and motivation. Mostly, that I don't have to be positive all the time. Mental therapy has taught me to feel all the emotions, and that if I push them away, they will come out in other ways. As for staying motivated, when I was first diagnosed, all my goals revolved around managing my symptoms. It was all about MS and I forgot all about the goals that filled me with light and happiness. My self-care has nothing to do with MS. It's writing, painting, gardening, and creating. If I can do those things, it's easier to want to manage MS. Those are the things that make my life worth living.

#6: Your story and experiences with MS are incredibly valuable and can provide encouragement and motivation to others in the community. What words of advice or encouragement would you give to someone who is newly diagnosed with MS or going through a challenging time right now?

I have lots of advice, all of the time. But these are my top 5:

1-Learn to trust your intuition;

2-Set goals that fill you with excitement;

3-Create if/then action plans. So when the unexpected happens (and it will) there is a plan in place;

4-Express gratitude and love to God;

5-Reach out to others. Not just to those with MS, but to anyone needing a pick-me-up. If you want to feel hope, give hope!

#7: Have you started a business or mission related to MS? Can you tell us about it and what inspired you to take this step?

During my second relapse, I was sent to the city hospital hours away from my home, family, and rural hospital pharmacist who had given me so much hope. It was here that I felt the despair of having MS. From my hospital bed, I began searching online for MS groups for support and found myself falling deeper into uncertainty. People begging for hope, but no one actually offering it. That's when I realized everyone needed a Dave or a BFF with MS who could show you "I can't feel my feet but life is good." As an author, I thought I could write a book showing that there was hope. I began interviewing people with MS asking "How did you find hope"? I compiled their stories into a book, I named "Project MS Blessed." I loved the hope shown as I read each story, BUT it didn't feel complete. So I started researching HOPE and began writing a second book. This time a self-help book that caters to MS and the science and actions around hope. It will be published in the fall of 2023. From there I started my Instagram account @Your_ bff_with_MS and website authorleisawallace.com specifically designed with tips, tricks, and strategies on navigating MS with HOPE and JOY.

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