The year 2008 wasn’t quite a stellar year for me, but it certainly was memorable and changed many things for me and my family. In addition to having a heart attack in January, I was diagnosed with multiple sclerosis in September. They were both unexpected events that we could not have planned for.
I continue to work full time for a local university ( 25+ years) and have kept the same husband even longer (40+ years). From these numbers you might surmise I don’t do change often, and having this chronic disease enter our lives, forced a major shift in my activities. Our children are grown and I have the luxury of free time, since I no longer have to run a car pool for after school activities or be a Scout leader.
From these two major health events, one that has been resolved and the other that will never go away, I learned a new strength – the power of social media, the internet, and connecting with other people in like circumstances. I’m no scientist and still struggle with much more than the basic understanding of MS and the many treatments available to us, but I am good at sharing my personal experiences, answering questions, and also listening. I used to say some people were meant to build rockets and airplanes, and then there are those of us who are meant to be stretched out on a blanket in the lawn staring off into space dreaming – if you read my work you will be able to identify which group I fall into.
My experiences and ability to exchange thoughts through my words, led me to become a community leader at MedHelp.org’s Multiple Sclerosis forum. The resources I have available through my employer have allowed me to run an MS Aquatics program (for free and using volunteer students majoring in Physical Therapy) for 4 years.
I have been a patient consultant on projects for Biogen Idec and EMD Serono, and received small honoraria for my participation; it has been an illuminating experience to see MS treatment from the perspective of the pharmaceutical industry. I also volunteer for the local and state NMSS chapters and the Accelerated Cure Project. I am particularly excited to be a part of two major projects with ACP and I will be sharing those details soon.
March 2013, I was asked to join the inaugural group of MS Advocates who write for MultipleSclerosis.net, and I continue to blog regularly for their site. It used to be here at my blog Inside My Story: Life with MS and More, I would get maybe a dozen friends and family members to read my blog; now thanks to the exposure of MultipleSclerosis.net and their Facebook page, many, many more people read my words.
Wanting to understand more about how we use the internet to inform our MS decisions and treatment choices led me to work with a research team through my employer. That research project connected me with the Patient Centered Outcome Research Institute (PCORI), where I also served as a merit reviewer for PCORI funding requests and now as a PCORI Ambassador.
Most recently, in 2013 I began an association with the Accelerated Cure Project and assisted with the creation and development of iConquerMS™, a patient-designed and patient -driven research portal, funded through PCORI. I am the Lead Patient Representative and recently elected Chair of the Governing Board. It is an ambitious project and we are looking to enroll 20,000 people living with MS to share their health data and construct a Big Data picture of MS for researchers.
Inside My Story does not have advertising, and when I do write about information from any of my various sources, I will let the reader know. I do not accept any medical goods or services in exchange for my writing, and comply with the standards for blogs set by the Federal Trade Commission. I strive to represent the MS community with integrity and high standards through honesty and accuracy in my writing.
Whatever your connection to MS, I hope you will subscribe to my feed here or follow me through MultipleSclerosis.net or perhaps both. I am honored that you have stopped through my site and taken time to read my words- I hope something I write will resonate with you and provide education, comfort, humor or motivation to do more with your health care needs. Feel free to email if you have comments, questions or ideas to share; this is not meant to be a monologue.