On July 8th, 2016, at Portland State University, we will be presenting a benefit concert titled, MT to end MS. This is a concert that has been six years in the making. One that my husband, our friends, and family have helped us to bring to fruition. We will be joined by four friends to present a musical theatre concert filled with humor, hope, and harmony. If you feel so inclined to join us, or purchase tickets for other people to attend, if you live far away, please visit this website for ticket information: http://www.brownpapertickets.com/event/2554413
This is an acronym that stands for multiple sclerosis.
What does that even mean? To me it means my husband has a disease that we have minimal control over. It means that six years ago his health changed, our life together changed, and we face it together to this day. M.S. means that with research, with funding, and with clinical trials there may be a cure in our lifetimes.
The technical explanation goes something like this: M.S. or multiple sclerosis can be a disabling disease that affects the central nervous system in a human’s body. The central nervous system controls everything you do as a human. Consider this, when you lift your hand or arm, you use your nervous system. If you have to turn a certain direction and move your head, or perhaps you want to articulate the protocols for a specific procedure at work; your recall of thought comes from… you got it… the central nervous system. The central nervous system in turn controls the ability to follow through with your desire and your independent function in life.
The fascinating and frightening thing about M.S. is that something signals the immune system in our body to attack the brain and spinal cord. After these attacks take place there are lesions or ‘spots’ left on the brain that indicate with MRI that the person has MS. We were told once to think about it like this:
Do you own a vacuum?
Does that vacuum have a thick cord that plugs into the wall?
Yes? That cord, if cut open has a thick outer layer protecting all the complex wires beneath the cord. That cord is similar to your spinal cord, and all the nerve fibers coursing through your brain. Except that in your brain these are covered with what is called myelin. This myelin is similar to the vacuum cord’s plastic covering. The outer layer that protects your nerve fibers and spinal cord is a vacuum cord essentially.
The immune system will suddenly attack the myelin all the way to the core which will then interrupt signals that are sent to the brain and leave lesions or spots from the damage. Therein causing unpredictable symptoms such as numbness, tingling, blindness, mood changes, memory problems, inability to walk, the inability to move your appendages, paralysis, this list could carry on and on, it depends on each individual.
For my husband it was numbness in his hand, arm, and later optical neuritis that signaled to us that something was going on with his body. Something serious. Something that took months and months to diagnose. At the end of a six month journey we had a diagnosis, we had met with many medical physicians, and finally we had found an amazing neurologist that gave us options for RRMS, remitting and relapsing MS. The unknown can seem daunting, however with knowledge, with questions, and with the ability to focus on the can do’s and not the can not’s you can move forward with your life.
Raising awareness for this cause is crucial, not just in a personal way for my husband and friends living with M.S., but for future generations to hopefully not live with or experience this disease. For more information please visit the National M.S. Society’s webpage at: http://www.nationalmssociety.org/What-is-MS
All proceeds from our event will be put directly into the bike MS fund for my husband’s 2016 team. All funds received go directly to the National MS society for further research to find a cure. Thank you for reading this friends. Have a sparkling day.
Note: I first wrote of my husband’s journey years ago before his first Ironman Competition. It was titled, “Footprints Along The Way,” and can be found in my blog archive list for July 2014.