August 2023 Edition
"The New Face of MS" newsletter is dedicated to empowering individuals in the MS community by providing valuable guidance, support, and resources for living a healthy and fulfilling life with Multiple Sclerosis.
top of page
Search
California, USA
When were you diagnosed with MS? October 2010
What type of MS do you have? Primary-Progressive MS (PPMS)
#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?
When I was diagnosed, I was finally content to know I had something that wasn't cancer. At the time, there were no treatments for Primary Progressive MS (PPMS), so I started researching alternative treatments. I tried several things, before finding the one's that I liked. I tried the Walhs Protocol. It was hard. I used Low-level laser (light) therapy (LLLT) which is a fast-growing technology used to treat a multitude of conditions that require stimulation of healing, relief of pain, inflammation, and restoration of function. I stuck to this prior to Covid. I also used High Dose Biotin which took away my MS hugs and I'm still committed to Intermittent Fasting. But despite my efforts, the disease is still breaking down my body and I can only walk around my place with a cane. I'm working with the Cionic Neural Sleeve for my right leg which has spasticity and I am also looking at a new therapy by Dr. Folake Taylor who also has PPMS.
#2: What MS symptoms do you have and how do you manage them on a daily basis?
I experience bladder problems, so I eat pumpkin seeds to provide support. In addition to that, I also wear briefs or pads daily. I really wish I could purchase and use Sativex for my spasticity, but unfortunately, it's not available in the US. To manage my health, I take vitamin supplements such as B12 and D with K2. I also include POM juice and beet gummies in my diet. In the past, I used to juice greens with specific vegetables weekly. But since I'm now residing in an assistive living place, I can no longer do that. To stay active, I utilize a 2-motor elliptical vibration machine. However, fatigue still remains my most challenging symptom. At this time, I've had to switch from a walker to a cane for mobility.
#3: Who/What has been your most important support system?
My greatest source of support was my partner of almost 19 years. Although, my partner took sick last winter and passed away in May, I still have the loving support of my children, my mother, my sister, and my new friends where I live. I've joined about four MS websites and I've also joined a support group in each city that I have lived in. My circle of support and I, all participated in WALK MS for the first five years, after my diagnosis. These were certainly fun times spent with good company.
#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?
I started out with a cane and moved to a rollator/walker. Then I moved on to a specialized rollator that I could lay my arms on, but now, I'm back to a cane and a transport chair.
#5: How do you stay positive and motivated in your daily life? What do you do for self-care?
My faith and my friends help me stay positive. I also started a journal this year, since, I had to take early retirement. I focus on self-care daily. Especially since I started reading books about MS and nutrition.
#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?
My advice to someone newly diagnosed would be to learn as much as you can about your type of MS and start advocating for yourself when talking to your neurologist. Keep a log of what you experience, what treatments you try, and why, and keep abreast of what new therapies, devices, drugs, and diets are available. There are more Youtube videos out now specifically for the MS community to help us stay active and exercise too. Lastly, get on a gluten-free diet!
#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?
Although I don't have a specific mission or business, I make it a point to raise awareness about Multiple Sclerosis.
Want to become a part of the movement? Click the box below to order your gear!
Leave a comment, and share your experience. We would love to hear from you!
Texas, USA
When were you diagnosed with MS? May 2020
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?
Prior to this pandemic, I began experiencing neurological symptoms. My right forearm had gone numb with tingling and burning. Me...thinking of a previous neck injury, thought this was just a result of that. As the issue worsened, I became very anxious then testing positive for covid-19 sent me right on over the edge. The numbness had progressed up my arm all the way to my right breast. While recovering from covid-19, the issue began to improve on its own, but returning to work added on a new symptom—blurry vision in the left eye. At this point, I had been sent for 2 MRI’s previously, one of the brain and one of the C-spine. In the pit of my stomach, I had a strong feeling about what the cause of my problems were, but remained in denial. The answer became clearer and clearer as research and testing went on, but I needed a more accurate diagnosis to accept it. Following my spinal tap, that is exactly what I got. I can’t even begin to describe how I felt. MS is not new to me; I’ve witnessed my mother’s journey with MS firsthand. I’ve seen her at her very best and I’ve seen her at her worst, which is what terrified me the most. These next three affirmations have reminded me of the kind of person I am. I am persistent, resilient, and I never give up or back down. From the beginning, I was determined to get to the root of the problem I was facing. A doctor told me “This is in no way MS, maybe tendonitis or nerve damage, but not MS.” But, I insisted upon getting a second opinion, and thank God I did. This will not be an easy challenge for me, but I am up for the battle. MS affects every individual differently and it is the unknown that scares me. There is so much uncertainty with MS, but my mom has done a great job of helping me make light of the situation. We laugh about so many moments from the past and we’ve found humor during this process as well. You would cry if you don't laugh about it and everyone who knows me well, knows laughing isn’t a hard task for me.
#2: What MS symptoms do you have and how do you manage them on a daily basis?
Fatigue is one that I find myself fighting on a daily basis, especially in the summer months. I consistently experience pain/discomfort in the neck and shoulders. Although I’m not sure if MS is to blame for that pain 100% due to my job as a nurse. But, I’ve been able to manage the pain with massage therapy and homeopathic creams/supplements. Magnesium CBD shea butter has improved my leg spasms as well. Dealing with the highs/lows of a shift at work emotionally is something I’ve had to learn to manage, my body has a tendency to want to just give out after a really stressful shift. My therapist has been a great help with that.
#3: Who/What has been your most important support system?
God of course. Journaling and meditation have helped me tremendously with the fear of the unknown. My mom is my inspiration. She’s dealt with this beast for years and still found the strength to be my #1 cheerleader, so I surely won’t be letting MS control my life. My fiancé is definitely a huge motivator. He is also super understanding and patient with me too. As well as, my friends, I’ve found through the MS community locally and online. They keep me encouraged and are a constant reminder to keep on pushing. Lastly, my family and friends are always available as a listening ear, for prayer, and for leisure. I’m truly blessed and grateful for my support system.
#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?
I have not had to use any accessories to manage daily activities.
#5: How do you stay positive and motivated in your daily life? What do you do for self-care?
I’ve always been a pretty positive and self-motivated individual even prior to MS. I've definitely had to dig a little deeper into that department after being diagnosed. Maintaining my autonomy and my career definitely keeps me motivated. As a nurse, I’ve seen so many patients fight similar battles, as well as, battles that are even tougher than MS. The fact that those patients had the ability to remain positive and continue smiling through their pain shows me that I can do the same. Self-care is huge to me. Doing activities that I love such as dancing, swimming, shopping, and grabbing brunch with my girls is always a nice ending to a rough week. Taking care of my body by stretching, going to yoga, getting frequent massages, and eating healthy are all a part of my self-care regimen.
#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?
For those that are newly diagnosed, you are NOT alone. We’re all in this together on this lifelong journey. It’s scary, TRUST ME. I was once in your shoes but, just know there are many of us out here to support you. You don’t have to stop doing what you’re doing. However, you may have to do some things differently. But you don’t have to stop anything at all. You just have to learn to listen to your body and stay in tune with yourself.
#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?
Yes...My mission, “A Queen with MS”, came to me simply because I am a Queen first, and an MS patient second. And throughout my journey, I will assist in re-adjusting the crowns of Kings and Queens who may be discouraged. What started as a personal passion project for myself and my mom turned into the ultimate accessory for chronic illness patients everywhere. My goal is to continue creating resources from a Nurse’s POV that will further assist those with autoimmune disorders/chronic illnesses in staying organized with their health tracking, learning, and coping with ongoing flares, feeling alone, etc. A Queen with MS: A Weekly Wellness Diary and Chronically Fabuleux: A Weekly Wellness Diary are both available to purchase on Amazon. As a bonus, my diaries include a health portfolio, care team list, medication list, and lab result tracker. After seeing the feedback following the release of my two journals, that alone inspired me to really promote my mission. I’ve been participating in speaking engagements and as a vendor at wellness events, nursing events, etc. If I am helping only one person by doing all I can as a Nurse with MS, that is all I need to keep going. I also have merchandise (hats, shirts, bottoms, backpacks, etc.) that complement my mission and my journals.
Want to become a part of the movement? Click the box below to order your gear!
Leave a comment, and share your experience. We would love to hear from you!
bottom of page