North Carolina, USA
When were you diagnosed with MS? 1986
What type of MS do you have? Relapsing-Remitting MS (RRMS)
possibly 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?
I was diagnosed with MS in 1986, before there were any FDA-approved MS medications or the internet! I was 27 years old and working in Manhattan at a job I loved, living in a charming apartment and loving my life. However, I couldn't ignore the symptoms I was experiencing. So I went to a neurologist, who after a spinal tap and CAT Scan (MRIs weren't widely used yet) I was diagnosed with MS. I went for a 2nd opinion in New York City and MS was confirmed.
I was actually relieved to know what was causing my symptoms, yet I had no way to find others living with the same disease. At the advice of my doctor, I gave up my job, apartment and moved home with my parents. He also advised me to rest as much as possible, call him if I had an exacerbation and he'd prescribe steroids to battle my symptoms. Let me tell you, it was a dark and scary time.
I refused to sit still, so I took action by leading an MS support group, writing Letters to the newspaper editor, and sending articles about MS to advocate for our community. I've been advocating ever since. After 37 years, I still enjoy being an advocate. Because, I know my knowledge and experience will help others feel less alone and more empowered on their journey with this crazy disease.
I've tried to live my life as best as possible within my abilities. There are dark and bright days. I won't sugarcoat this disease. However, I do my best to take it all one day at a time. For me, this works best.
#2: What MS symptoms do you have and how do you manage them on a daily basis?
My MS symptoms include numbness, weakness, and balance problems in my legs, fatigue, cognitive challenges, bladder and bowel dysfunction, partial complex seizures, as well as tinnitus.
Sessions of physical therapy address issues with walking, for fatigue I rest when needed, and as far as my cognitive issues, I'm constantly reading, and doing crossword puzzles to keep my brain active. For my bladder and bowel issues, I've gone to a pelvic floor therapist while removing gluten, sugar, and dairy from my diet. The seizures are controlled by medication and my Tinnitus has not been addressed yet.
#3: Who/What has been your most important support system?
I was dating my boyfriend (now husband) when I was diagnosed. This year will be our 35th wedding anniversary! Our son is 30 years old. Together they are my greatest cheerleaders and devoted advocates, helping me when needed. They provide unconditional love. I am grateful for them every single day.
#4: Do you use any accessories like canes, walkers, or wheelchairs to manage daily activities?
I use a cane when needed.
#5: How do you stay positive and motivated in your daily life? What do you do for self-care?
I am naturally a positive person, always looking for silver linings even in the darkest situation. I've kept it up by surrounding myself with trusted friends and family. I also enjoy meditation, practicing mindfulness, and keeping a gratitude journal. This all helps me stay positive.
#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 always tell newly diagnosed individuals to trust their instinct to be their guide. If something doesn't feel right, believe it and move on. Particularly with your medical team. Keep hope in your heart that better days are ahead and lean into the MS community who are always there for you, whenever needed.
#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?
Over a decade ago, I started my blog. You can find it at AnEmpoweredSpirit.com, which remains my platform for serving as a consultant, speaker, and writer. My mission is to empower, inspire, and educate individuals within the Multiple Sclerosis (MS) community to live fulfilling lives to the best of their abilities.
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