7 Questions with A Couple featuring Emily Reilly

NMSS Healthcare Provider Engagement Manager, MS activist

Jennifer and I are blessed by the many great people we have met in our MS community. These are the people who continue to inspire us and provide the support we need to move forward in our lives with this disease. We were especially fortunate that our paths crossed with the dynamic Emily Reilly a few years ago. Emily is the National Multiple Sclerosis Society Healthcare Provider Engagement Manager and a certified personal trainer. We first met Emily at the 2018 Brian Mason Weekend Escape MS family event in Virginia, and she has been an incredible friend ever since (she’s also a fellow MS activist!). We’re excited to share our conversation with Emily here, and we strongly encourage you to follow her online to get regular doses of inspiration.

 1.  You were only 17 years old when you were diagnosed with Multiple Sclerosis. Had you always been physically active, and how did your diagnosis shift your approach to exercise? 

 I grew up in a household where staying physically active was instilled in me at a young age. I grew up not only enjoying the great outdoors. I also was quite the athlete playing every sport, but soccer being my favorite. I actually had the goal of playing college soccer and possibly beyond college, so you can imagine how my diagnosis at age 17, a month after signing a college soccer scholarship was quite scary. I wasn’t sure if my future would include staying active, but thankfully my amazing neurologist encouraged me to not let MS stop me and that staying active was important!

My diagnosis was (and continues to be) a humbling experience. I had to accept that I was no longer the athlete I used to be – my endurance and strength and possibly my ability was going to be different moving forward and giving myself grace in understanding that continues to be a journey 🙂

Over the last 17 years, I have learned to accept this new normal and that my MS looks different every day! Somedays, my MS does not impact my ability to take or teach a fitness class or play competitive volleyball, where other days my fatigue or other symptoms like spasticity or cognitive challenges makes doing simple tasks challenging. So my approach is give myself grace and appreciate and celebrate what I can do today!

2. Fatigue is a very common and overwhelming symptom of MS. How does physical activity help you to manage your fatigue, and how do you know when to stop and take a break? 

Fatigue is one of the symptoms I often experience, so learning to listen to my body is key! This is where HIIT training (high intensity interval training) is a great option for exercise – it allows you to move for a certain period of time, then you rest and repeat. This is actually found to be an effective way for people with MS to exercise! It helps us manage energy while getting in a great workout! But like I said, listening to our bodies is important. I have learned what it feels like when I have hit my “threshold,” and I know the consequences of pushing beyond that (some of you may know what i mean: I just want to be superwoman, you know!).

But I always say any movement is good movement, so on those days where fatigue is intense, I do what I can. Maybe that’s stretching or taking my dog for a walk or doing a more modified lower-impact class. It’s amazing the impact exercise has on improving fatigue! Not only does it give me endorphins to help boost my mood, it in turn helps to give me energy! But if I’m honest, there are days when I am fatigued, and that is my body’s way of telling me to rest. And that is OK too!

One thing that I do and have taught others to do is a body scan, where you take an inventory of how you are feeling from your head to your toes (in the morning, middle of the day, night) see what symptoms you are feeling and use that as a way to inform you what you can/should do that day. Am I feeling fatigued? Do I have spasticity today? How’s my mood? This will then help me to know if maybe I should simplify exercises or focus on stretching, etc.

3. After you became a group fitness instructor, you became a certified personal trainer to create and teach modified fitness classes. Why was it important for you to institute these modified classes? 

 I realized the impact being physically active had on me physically, mentally and emotionally. I wanted to let the MS community know that staying active was possible and to know that no matter what their limitations, they really can keep moving. It is so fun watching people feel empowered and excited to experience exercise maybe in a new way!

Fun fact: when I was in college, I was actually in a fitness DVD for people with MS, and they had exercises for all levels of ability. That’s when the seed was planted! Fast forward 10 years, and here I am teaching classes for all levels of ability!

4. What advice do you have for the newly diagnosed about exercise? How about for people like Dan and me who have lived with MS for years? 

I would like to share that exercise is shown to be safe and beneficial for people living with MS, so it should be a part of our everyday life. The National Multiple Sclerosis Society published a paper on the exercise recommendations, and I love them because the 150 minutes/week includes exercise and lifestyle physical activity. It doesn’t have to look like going to the gym and pumping iron. It can be dancing, walking, yoga, gardening, going to PT. My motto is no matter what your limitation, you can keep moving.

Here are a few tips to help get you and keep you moving:

1) Find something you enjoy! If you don’t enjoy it, you won’t stick with it. And consistency is key!

2) Find a workout buddy – we all need accountability, socialization and maybe a little bit of healthy competition (am I right?).

3) Set goals and share them with someone (PT, workout buddy). Something specific, measurable, attainable and timely. The National MS Society had a great program – Pathways to Wellness in MS – and it had some great worksheets to help people identify what these goals are. One month my goal was to walk/run 1 mile a day. It was fun and not too crazy. If I had to skip a day, I just adjusted and it was fun to celebrate that goal when I achieved it. Even if I didn’t hit the goal, I still tried to move my body every day, and that is how we create healthy habits.

4) Give yourself grace as you begin or continue this journey to being physically active. Every day is different with MS, and learning to listen to your body and adjust goals takes time!

5) Celebrate your little victories. Living with the disease can be discouraging if we allow it, so focus on the things you did do today. I did laundry and walked the dog, or I got in my workout and cooked dinner. It helps shift our mindset, and it feels good to feel successful and empowered.

5. You often mention that you are a dog mom. What can you tell us about your “children,” and why are pets so important to you? 

Ha-ha yes, I am a proud dog mom of Angus, my almost 11-year-old Brittany spaniel. I grew up with animals and have always loved all animals, so when I got married, the first thing I wanted to get was get a dog LOL. My husband is in the Air Force and gone quite often, so having another companion was really important to me! Angus is definitely a source of entertainment, and I just love how dogs show unconditional love and are very therapeutic to have around! He also gives me motivation to get outside and get moving. 

6. You also have said that your faith is very important to you. How has it helped you in coming to terms with the challenges you face with MS? 

Yeah, my faith has been a huge cornerstone of strength and hope my whole life, but especially when it comes to facing the challenges of living with MS. I think my diagnosis really solidified my faith when I realized that I found myself at a fork in the road. I could either go down the path of discouragement and let this diagnosis take over and give up all of my dreams and goals. Or, I could go down the path of faith and perseverance, taking the disease head on, refusing to let it stop me. This is when I leaned on my faith and trusted that the Lord was going to use this diagnosis for my good and His glory. I have been blown away by the way He has used this diagnosis to impact people all over! My prayer is that people get to experience His love and grace through me and my testimony and feel empowered and inspired by the classes I teach.

I do have a few tatoos on me as reminders too: 

1. Apart from him I can do nothing
2. & 3. An anchor and a mountain to remind me the Lord is my anchor and where I look for strength and hope

7. Where is your ideal place/dream place to work out? Why there? 

Ooo I love this question! I grew up in the mountains, so anytime I can to be outside in the mountains hiking or skiing is always ideal. I find nature therapeutic, and it goes along with my faith. But I feel the closest to God when I am enjoying His creation and then add on getting moving. It’s the perfect combination! If you follow me on IG or Facebook, you will see I just love an active date or vacation!