My Multiple Sclerosis Story
By Kristin Decker
I was diagnosed with MS in September 2010, at the age of 28. Less than 2 weeks after experiencing my initial symptoms (loss of peripheral vision, drooping face, numbness/paralysis on the left side of my face) I went to a neurologist who sent me directly to the ER to get an MRI. I had an MRI and was admitted to the hospital for 3 nights…with additional MRI’s/MRA’s and a spinal tap to confirm the diagnosis, which of course was MS.
I had no idea what to expect and my only other experience with MS was my aunt’s sister who was in her 60s, confined to a wheelchair, and living with a more progressive, debilitating form of the disease. I was scared, confused, and just really feared the unknown of it all. Fortunately, I found a website ‘Patients Like Me’ where I was able to connect with another female in her 20s, who had already been navigating the disease for a year or so. It was so helpful to speak with someone else living with MS, learning about their story and trying to make sense of my own symptoms/side effects while trying to get an idea of what the future may have in store.
A year after my diagnosis I became involved with the National MS Society through Walk MS. It’s been an incredible experience to captain a team (‘All Hands on Deck’). I have loved participating in the event these past 7 years (this will be my 8th), which brings together family, friends, coworkers, etc to raise awareness and funds for the National MS Society. Our team has won the most team spirit awards, we’ve been recognized for reaching the $100K fundraising milestone and last year I served as Walk MS Ambassador for the NJ Metro Chapter of the National MS Society. I would have to say that the best part is that over the past 7 years, we’ve raised more than $115K for the society.
These past 8+ years have been an interesting journey. I’ve gone through 3 different treatment plans, the last being Lemtrada, which I did 2 years ago. Lemtrada is a 5 day IV treatment that essentially wipes out your immune system to let the cells regenerate with the hope that they will no longer self-attack. My doctor has been confident with the results of my subsequent MRI’s that I was able to skip the second-year dosage and have been in remission since (with 1 minor flare up last year).
With this diagnosis, I also became interested in how I could help better manage my disease. I started to learn as much as I could about nutrition and 2 years ago enrolled in and graduated from the Nutritional Therapy Association as a certified Nutritional Therapy Practitioner. The goal was to help others living with MS, utilize diet/lifestyle to help alleviate symptoms and heal their bodies. Last summer I was certified through the National MS Society to become a self help group leader and starting March 13th, I will be hosting a monthly call with others living with MS who want to learn more about nutrition as it relates to MS. We will also be discussing how to utilize movement, stress management, sleep and relationships with others to help manage their disease.
HOWEVER, overall, I have been incredibly fortunate with my diagnosis of RRMS. I’ve been able to continue living with minimal modifications to my everyday life and have only had to deal with 3 or 4 significant flare-ups over the course of the last 8 years.
One thing that I’ve loved about being involved with the National MS Society, are the connections that I’ve made with others living with MS. I’ve been put in touch with quite a few newly diagnosed patients and it’s been incredible to lend support, offer advice/suggestions and just share my story with the goal of providing hope and inspiration that this diagnosis isn’t a death sentence, rather a chance to show people that we are warriors who will fight to better ourselves and will fight to find a cure so one day no one else is diagnosed with MS.
Circling back to when I was first diagnosed and reflecting on everyone I’ve had the opportunity to interact with, I think the one thing that is always true is that those first couple of months are the hardest. There is so much unknown. There is embarrassment and shock. There is sadness and anger. HOWEVER, once you get through the beginning, through making choices about treatment, and hopefully having the chance to interact with support groups or others living with MS, you eventually learn that you are a bad-ass warrior and stronger than you ever knew possible. I love that. I love being able to share my experience with others and help them realize that this is not going to define them in a negative way. This is not the end, rather a new beginning. A new chance to discover how strong you really are and to hopefully live your life with meaning and purpose.
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