Our other job

As you know by now, one of my newfound roles in life is to increase awareness of Kennedy’s Disease with the public and in the medical community.  I feel it is important that we take the time to explain our condition to others that are interested.  At one time I was uncomfortable telling people about the disease.  However, once I found that people were actually interested in learning more, opening up about Kennedy’s Disease became second nature.



This blog is one way of reaching out to those living with Kennedy’s Disease and also with others who have no idea about this health issue.  The number of page-views has grown beyond any expectations that I had when I started writing a year ago August.  In November there were 4,780 page-views.  That was up 1,500 views from September … the last time I checked.  The articles with the largest number of viewers were “I feel great … and so can you” and “The only disability in life is a bad attitude.”  Thank you for showing me that there is a reason for sitting down three times a week and trying to come up with something interesting and hopefully original.

Another way I increase awareness is at the MDA clinic.  My neurologist, Dr. Hopkins, is a wonderful guy.  He makes certain that adequate time is given me by his medical students to learn about Kennedy’s Disease.  I always bring along several articles and sharing them with the students.  Dr. Hopkins often makes copies of the articles and hands them out for the trip back to Emory.



I also take time to tell my other doctors and their nurses about the disease.  Yesterday, for example, my dermatologist spent fifteen minutes questioning me about the disease.  He then called in the four other doctors who work for him and explained my condition.  It felt strange having an audience, but also good because of their interest.

As I mentioned, I consider “increasing awareness” one of my jobs.  I now challenge you to also take on this task … if you are not doing it already.  The more people that know, the better it is for all of us who “live with Kennedy’s Disease.”