thought the light tingling in her lower spine was from too many yoga and ballet classes. Several months later, Matthias, a writer for Patch, almost fell down a flight of stairs after losing some sensation in her leg—and multiple symptoms later, she was diagnosed with multiple sclerosis (MS).
The National Multiple Sclerosis Society defines MS as “a chronic, often disabling disease that attacks the central nervous system, which is made up of the brain, spinal cord and optic nerves.” It is the most common neurological disease leading to disability in young and middle-aged adults; however, symptoms can range from numbness all the way to paralysis.
As part of her treatment plan, Matthias, an active 27-year-old who is a regular Patch contributor and lives in Pacific Beach, now injects herself with subcutaneous shots three times a week to help slow the disease’s progression.
And from Sept. 23-25, Matthias will participate in the Southern California Challenge Walk MS as her “MS coming out party.” She will be among approximately 300 walkers hoping to raise a total of $1.7 million for MS research, programs and services for Southern Californians living with MS. Along with her husband, in-laws and sister-in-law, Matthias will be walking 50 miles over three days from the Carlsbad Flower Fields to the Embarcadero downtown, including a trek through Del Mar and La Jolla.
Matthias discusses her diagnosis, common multiple sclerosis misconceptions and realities, and her participation in the walk:
Patch: How do you describe multiple sclerosis to someone who knows nothing about it?
Angie Brenner Matthias: I'm glad you ask. I would start by stressing that no two people with MS experience it the same way. In its simplest terms, MS is a chronic and sometimes debilitating disease that attacks the central nervous system. At present, it's thought to be an autoimmune disease, meaning the body’s natural system of defense is leading the attack inward.
Patch: Before being diagnosed, what did you know about MS?
Matthias: Not a whole lot. Pre-diagnosis I would have likely envisioned anyone with MS as at least partially, if not fully, paralyzed.
Patch: What would you say are the biggest misconceptions about the disease?
Matthias: The same ones I started with: that everyone who has MS is paralyzed or will become paralyzed. This is not the case at all. Also, [a misconception of MS is] that the known cause is a lack of Vitamin D or particular childhood or adolescent illnesses. There is no causal relationship between any one factor and developing MS.
Patch: What was your initial reaction when you discovered you had MS?
Matthias: Complete and utter disbelief. It's so surreal to go from being a healthy, active 27-year-old woman to someone with a potentially debilitating disease in the span of seconds. At first, I think I felt a lot of anger.
Patch: What do you think of your diagnosis now?
Matthias: Now, I realize that MS will be a part of my life, but it will never be who I am. … Let’s find a cure so no one ever has to feel the way I felt in the doctor's office that day again.
Patch: How does MS impact your day-to-day life?
Matthias: It depends on the day. I'm still new to this, and I've been lucky to have minor symptoms, the most serious of which are balance problems. On the bad days, I smack into things here and there, but I've always been clumsy so I consider myself already somewhat trained in that department. Sometimes, I just have to remind myself to slow down and accept that I, like anyone, have my limits.
Patch: Are there any things that you cannot do now that you have MS?
Matthias: I can't handle heat as well as I used to. It exacerbates symptoms, so I had to put Bikram Yoga classes on the shelf. Running myself ragged has also become a thing of the past. Sleep is good.
Patch: How long did you wait to tell your family and friends? What was their response?
Matthias: It happened in shifts. My husband was the first to know. I got my preliminary diagnosis midday and waited until he got home from work to tell him—his shock mirrored my own. From there, we only notified immediate family members and a few of our closest friends within the week after an MS specialist confirmed the diagnosis.
Everyone else, I told when I decided to do the Challenge Walk. This was the most difficult decision I've ever had to make. As someone who is very independent and headstrong, I feared losing my identity to this disease and becoming a “sick person.” I knew though, that to become active and advocate for MS research I needed to open up and tell my story. The response has been amazing, overwhelming, emotional and uplifting, but also quite trying at times.
Patch: Why did you choose the name "The Greenhorns" for your Southern California Challenge Walk MS team?
Matthias: I wish there was a less nerdy answer to this question, but there isn't. My husband and I are huge Deadliest Catch fans and, as any true fan knows, greenhorns are the newbies on the crabbing vessels. We're new to the walk but feel we've proven ourselves so far by bringing in the “green”!
Patch: How much money have you raised, and how did you raise it?
Matthias: Individually, I raised over $6,000. Our team total was over $16,000. We reached out with my personal story to an extended network of family, friends and colleagues, and so many amazing people came through with generous donations.
Patch: What's next?
Matthias: I imagine we'll again find ourselves at the helm of life's mysterious ship. Definitely in the pipeline are some writing aspirations that tie into my journey with MS, and I plan to pursue more volunteer opportunities to help the Pacific South Coast Chapter of the National MS Society.
Overall, I can't say I know for sure, and I'm comfortable with that notion.
To contribute to Matthias' team, visit her MS contribution page here.
