I just returned from an MS Town Hall Meeting. For the past year we have been holding these evening get-togethers to talk about the issues facing MS patients, carepartners and healthcare providers. There are no powerpoint or computer presentations, instead we use a flip-chart and markers.
Since this is an online community, I want to share with you what we are doing offline at our MS Town Hall Meetings.
M*STAR stands for Multiple Sclerosis Team Approach Rule and it returns MS to the MS patient. This may seem like a simple principle - and it is. It is also something that is lost sometimes in the hustle and bustle of modern medicine. Medicine should be about the patient and you should fight for your right to be the center of the MS team. This doesn't mean struggling with your doctors, nurses or loved ones - instead it means recognizing in yourself that YOU are the center of the team and that everyone else is there to work in partnership with you to improve and maximize your health.
So who are these partners (remember, you are the team leader)?
Your primary doctor, MS doctor/nurse practitioner/physician assistant, and MS nurse - these should all be background players. In the foreground should be your loved ones: friends and community, carepartner and family. Your employer is a part of this team and is the rest of the MS community - both online and offline with the non-profits -- like the National MS Society, MS Association of America and MS Foundation - and support groups.
At our MS Town Hall Meetings, we use the M*STAR to advance the Multiple Sclerosis Patient Network (M*S*P*N*). This means that we all work together to try not only to help ourselves, but to move the entire MS community forward. At tonight's meeting we discussed the following 3 topics:
1. Medical Insurance - the difficulties in getting it after being diagnosed with MS and the importance of not having a lapse in coverage.
2. Medicine that works - we discussed the advances being made and the search for medicines in progressive MS.
3. MS or not - how we make the diagnosis and once it is made, it is often frustrating not knowing what is an MS symptom and what is not.
I hope that we can continue this discussion online and I look forward to reading your thoughts.
Published On: January 28, 2008