Meet - Paris Smith

Georgia, USA

When were you diagnosed with MS? May 2015

What type of MS do you have? Relapse-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?

My name is Paris and in 2015, I was diagnosed with Relapse-Remitting Multiple Sclerosis. I remember it like it was yesterday. I was at work and I had been having this horrible migraine close to my left eye. The migraines kept getting worse and my vision kept getting worse. One day, I woke up and my central vision was completely gone. I left work and went to see my ophthalmologist. They did a visual field exam on me. I remember the doctor came back in there and showed me the papers from my left eye and my right eye. In my left eye, there was a big circle in the middle and all I remember is her saying “You need to get an MRI now”.

So I left there and drove back to work and told my nurse manager, I had to leave. The hospital was right next to the clinic I worked at, so they sent the orders over and I had my MRI done. It was a blessing. Because, I worked with the wife of the MRI tech that did my scan. She was a nurse at the clinic. He showed me my scan and he told me that the spots that were lit up were lesions and it could possibly be MS. I went back to work not being diagnosed yet. At the time, I worked with a neurosurgeon and I showed him my scan. He said, “Whoever's scan this is, they need to go to the hospital to start steroids”. The doctor I worked for gave me his keys and sent me to another ophthalmologist. They did some more testing and I still did not know what was going on. The doctor told me I could possibly have MS, but I needed to see a neurologist quickly.

I went back to work because, I worked at a neurology/neuroscience clinic. He saw me immediately and sent me to a place where I could start IV steroids. They finally finished all my testing and I found out what I feared the most. I had Relapse-Remitting Multiple Sclerosis. My heart was torn; because, I had no family history of it. Throughout these past years, I’ve had multiple relapses. The worse one I had was in 2017. I was so stressed because of everything that I had going on in my life, at the time. My body just broke down. I couldn’t walk and I was in a rehab facility for 3 months. I had extreme spasms and spasticity. I went into fight mode. I knew I couldn’t be like this. I went through depression, anger and thought why was this happening to me? But in spite of everything that was going on, I started to see the beauty in it. I began to share my story publicly. The good and the bad. I knew I had to help someone who was dealing with the same thing, I was going through. This was just temporary! I was going to beat the odds and fight this disease that had me wheelchair-bound. I was going to walk again. By mid-summer 2018, I began to walk again. I felt so liberated that I tackled such a disease. I was so proud of myself and I began to say, I was beautiful. Being on steroids makes you gain weight and you start to feel self-conscious about yourself. You go through all these emotions of not feeling your best...but yet you push through!

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

I mostly deal with blurry vision in my left eye and migraines.

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

I would definitely say my family and the social media supporters who have seen me at my best and my worse moments in my MS journey.

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

I don’t anymore.

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

With all the relapses I’ve had throughout the years, I keep my mind in a positive space. God has brought me through a lot. Going through everything I went through with my MS, I learned to keep a positive mindset and to keep myself motivated to stay in a great headspace. I do a lot of writing and listening to calming music. I pray a lot as well. When I am not feeling my best I try to do a mask or do some retail therapy.

#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 would say stay positive! As hard as it may be just keep a positive mindset. Keep a supportive group around you even if it’s just one person. Try to stay as stress-free as possible. We all know that stress triggers relapses, so try to do whatever it is that makes you happy and at peace.

#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 business. But I recently tackled breast cancer too so I came up with the hashtag #beautifulwithmsandcancer. They are two different journeys that I’ve walked through and I aspire to help and uplift others dealing with both diseases.

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Meet - Rachel Carson

Georgia, USA

When were you diagnosed with MS? September 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?

On September 4, 2019, almost three weeks before my 36th birthday, I was diagnosed with Relapsing-Remitting Multiple Sclerosis. It all started after being at a happy hour with a co-worker/friend celebrating our first week back at work. I was working at a high school as a Dean of Students at the time and I fainted out of nowhere. I just remember one moment I was at the bar and the next I was waking up on the sidewalk. In the days following, I lost feeling on the left side of my body. I sought out medical advice from my PCP amongst other doctors and after about a month of different tests being run bloodwork, MRIs, etc., I received my diagnosis. Initially, my diagnosis felt like a death sentence. I immediately had a panic attack and I slipped into depression. I felt so alone and being 700 miles away from home didn't help one bit.

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

My MS symptoms are pretty mild, but they include numbness, tingling, weakness, neuropathy, muscle spasms, drop foot, vertigo, incontinence, fatigue, and depression. I manage them with prescription medications and a DMT called Tysabri. I am also intentional about eating properly and getting adequate rest.

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

Almost immediately following my diagnosis, I shut down. I was emotionally and spiritually broken. I sought some help because, I was fresh out of coping mechanisms and was soon diagnosed with depression and anxiety. I chose to go to therapy and it was the best decision that I could have made for myself. My only regret is not starting therapy sooner. Also having an amazing support team and my faith in God has helped me cope with my diagnosis.

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

No, I don't use any accessories or aides to help manage my daily activities.

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

Despite the many obstacles that I face when it comes to having MS, I continue to remain determined to live my life to the fullest and be an example of strength for others facing similar challenges. For self-care, I have been intentional about scheduling joy every chance I get. I have created a "Calendar of Joy" where I have things scheduled with the people, places, and things that I love. This conscious effort causes me to leave the comfort of my home at least once or twice a month.

#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?

If you are facing a health challenge with MS, it is important to remember that you are not alone. Surround yourself with family and friends who can provide emotional and physical support, as well as connect you with resources such as physical therapists or other medical professionals. Additionally, take time for self-care. Make sure that you get enough rest and nutrition, both of which will help you manage your symptoms more effectively. Finally, stay positive. Remind yourself of the things that bring you joy in life and don't be afraid to ask for help when needed. These strategies will help empower you to take charge of your health and live a fulfilling life despite any challenges that may arise.

#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?

As a Multiple Sclerosis Warrior who felt alone when first diagnosed, I identified the need for a space where one could be educated, encouraged & empowered as they navigate the world while living with a chronic illness, disease, or condition. I created HERillestlife, Inc. A safe space created for black female chronic illness warriors who reimagines what it means to be ill. HERillestlife educates on different health topics, shares resources to help others navigate the healthcare system, encourages women to be advocates for themselves, and empowers women living with chronic illnesses to have a voice in order to live their illest lives. As someone who personally battles several health conditions every day, which include but are not limited to Multiple Sclerosis, I felt that if I am able to help at least one other woman who is in search of someone that looks like them, I have fulfilled my mission.

Recently, I became an MS Ambassador and MS Support Group Leader for the National MS Society! I will be leading my own self-help group for black women living with Multiple Sclerosis. The group is called “The Soulful Sunday Sesh: MS Gets On My Nerves, But I Keep Smyelin”. It will meet every 3rd Sunday of the month at 3:33 PM (eastern standard time). It is a hybrid model support group and in-person sessions will be held in a predetermined location within the metro Atlanta area. Please follow HERillestlife’s Facebook page for updates!

https://www.facebook.com/groups/465221234826126/?ref=share_group_link

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Meet - Jenn Powell

California, USA

When were you diagnosed with MS? 11/2010

What type of MS do you have? Active Secondary-Progressive MS (SPMS)

#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?

The last thing I expected was an MS diagnosis when I woke up one day and realized I couldn't speak, talk, walk, or even move. Little did I know that this unexpected turn of events would lead me to discover the answers to many lingering questions. After a summer of what I now know was the effects of Epstein Barr, waking up with these distressing symptoms, left me in a terrifying state. My husband immediately rushed me to the emergency room, and from there, I was referred to a neurologist who suspected and eventually confirmed the presence of multiple sclerosis (MS). A lumbar puncture provided the necessary confirmation, marking the beginning of a 15-year journey that has completely changed every aspect of my life. MS has brought about significant changes in my life both positive and negative. But, it has also opened doors in ways I believe I would not have found without the diagnosis.

I have had to redefine myself and my expectations, hopes, and objectives. I have navigated the fear of watching my body decline before my eyes while taking the medications meant to stall the disease. I have lost a version of myself I thought was complete. But it wasn't. Not even close.

MS has gifted a quiet certitude and strength in me. It brought me to my knees so that I could find grace in asking for help and beauty in receiving it. It has gifted me with a career, I never thought possible and an assurance in myself that I never thought possible. I let go of toxic people, things, and thoughts because, I only had room for that which filled me. I slowed my pace and found beauty through grace - both for myself and those in my world.

Fatigue, pain, and disability continue. However, I find joy in my golden retrievers, good friends, family, husband of 26 years, advocacy, and my role as Brand and Marketing Manager for BioNews, the parent company of MS News Today.

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

My symptoms include fatigue, leg pain, insomnia, and cognition problems. I deal with them as they come. Fatigue is truly difficult because, it feels like you are walking through quicksand. Pain is always a battle; but, I find a multidisciplinary approach is helpful.

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

My most important support systems are my husband, my dogs, and my family.

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

I use a cane. I also use a wheelchair when I travel.

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

Self-care is important. In fact, it is essential. I make it a priority to set aside time to meditate and to spend quality time with my dogs, family, and friends. As well as time to give back to the community 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?

I would have told my newly diagnosed self to quiet her mind. Stay present as best as you can. Tomorrow is unknown, so try to live each and every moment to its fullest.

#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 am the Brand and Marketing Manager for BioNews, the parent company of MS News Today. I am also the host of the "Multiple Sclerosis Podcast". In addition, I fundraise and volunteer with the National MS Society and the International Progressive MS Alliance.

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