BENEFITING: The Multiple System Atrophy Coalition
EVENT DATE: Mar 01, 2014
I am a couple of weeks late, but wanted to share that I ran and completed all 13.1 miles! I had a blast! I feel super honored to have done this in memory of my beautiful mother and to have raised a few funds for The MSA Coalition. Thank you for the donations and support!
I am running a half marathon to raise awareness & funds for The Multiple System Atrophy Coalition, in memory of my beautiful Mother, Diana Propernick.
On March 7, 2006 my amazing mother was diagnosed with a rare, progressive neurological disorder called MSA (Multiple System Atrophy). After a couple of years of searching for answers, it was a relief to finally know why she was experiencing low blood pressure upon standing, gait/balance problems, small handwriting, and bladder incontinence. Her new neurologist was quick to recognize her symptoms, but kept to himself what this disorder was capable of. He sent us on our way to do our own research because he didn't have the heart to shatter our moment of joy and relief. He gave her medicine and told her she might feel better soon. We had no idea what was to come.
After the diagnosis, I went back home and did a little research. What I learned was disheartening and earth-shattering. There was no cure, no treatment, and a 5-10 year prognosis.
WHAT!? No cure? No treatment? Nothing??? 5-10 year prognosis!!!??? Are you kidding me? Those tears of relief earlier in the day, turned to tears of sadness and frustration.
We quickly connected with the only support group we could find: The MSA/Shy-Drager support group, now known as The MSA Coalition. We met an angel in the form of Vera James who gave us so much information it made my head spin. It was good information and very helpful, but not exactly encouraging when I realized my mom would most likely not be offered a specific treatment or medication that would CURE her or even delay the inevitable.
First thing was first; get mom moving and try ANYTHING we can. She was prescribed Parkinson's medication because we were told that MSA is considered a "Parkonson-Plus Syndrome". We were able to get her into a clinical study at UC San Diego but her condition worsened and she was unable to continue her participation. She tried accupunture, physical therapy, vitamin supplements, and even considered going to China for stem cell treatment. Unfortunately, nothing specific seemed to slow down the progression.
After much thought, she decided that she would fight this disease the best she could; with her strong will. Along with encouragement and support from her husband, children, family & friends, we made her as comfortable as possible, kept her smiling and rolled with the punches.
Every month or two, she would be robbed of something: having to quit her job, give up driving, gradual use of a cane after a very bad fall (then a walker and a wheel chair), and loss of her independence to be alone at home. After a brief hospital stay, she qualified for hospice care and we brought her back home. She was fed through a g-tube (stomach tube) and lived in a hospital bed for the last 15 months of her life, unable to speak, eat, drink, or move her body. She was literally a prisoner in her own body.
On May 10, 2010, four short years after her diagnosis, she let go and her suffering ended. She was only 58.
We never understood why Mom had MSA or where it came from. We were told it was sporadic, not genetic, possibly caused by the environment, and very rare. There were so many unanswered questions. This is precisely why I want to help raise awareness and funds for The MSA Coalition.
As their website states...
"The Multiple System Atrophy Coalition® is a positive beacon of hope standing up to a little known, rare, insidious disorder. Made up of dedicated volunteers, The MSA Coalition has a primary purpose of assisting researchers to find a cure. In the meantime, The Coalition also provides much needed patient and caregiver support, educational resources, and advocacy to create awareness and to fight for issues important to the MSA community. At present, 75% of all donations go directly into a dedicated Multiple System Atrophy Research Fund which now supports a research grant program."
- (See more at: http://www.multiple-system-atrophy.org/index.htm)
I am up for a challenge and running is a huge challenge for me, especially 13.1 miles! I think of the challenges my mother faced every single day she had this disease and what it must have been like. There are so many people who are facing those same challenges and have no choice but to fight....even though they are told there is currently no treatment or cure.
Whether you can give $1 or $5, or more, it will go to an organization that is striving to find a cure, and provides people and families with hope, knowledge, encouragement, and support. Whatever you may be able donate to The MSA Coalition - THANK YOU FROM THE BOTTOM OF MY HEART.