I work hard to earn a living, and to live a life I choose. For my being a MSer that means that I need to be read up on the latest research and participate in the up and coming research opportunities. The National MS organization has a plethora of resources and ways that the organization helps us feel less isolated and in control of this incurable and challenging disease.
I participate in the clinical trials that suit my situation and contribute to the research. That is the only way that we will change some of the longstanding attitudes about MS. I am not a number; if I contribute to the databases, then my participation is seen. The most interesting aspect is to read and engage with the different groups doing MS research. I think as far as digging into the mindset and lifestyle of MS patients, the Italians and British are aware of patient issues.
I made this discovery when I did two similar studies: one from the University of Washington and the other from a Collaborative Study with Italy and the UK. The European study clearly engaged in discussions with MS patients prior to releasing the study and so the researchers knew what to include in their questions which were multilayered and right on in their inquiry of a complete set of symptoms and signposts of MS. If researchers do not ask these kinds of thoughtful and complete questions, they are not able to improve health care for patients with MS.
MS Fortunate 