It is time a take a short break and let you know how much I appreciate you reading my blog. I have been blogging now for five months and published 92 articles. When I started, I really did not know what to expect or whether anyone, other than my family, would read these articles. I hoped to be able to reach out to a few people struggling with Kennedy's Disease (Spinal Bulbar Muscular Atrophy) and perhaps provide support by letting them know that they are not alone. I felt that if I could touch a few lives that it would all be worthwhile. I also wanted others to know that living with Kennedy's Disease is something that not only affects the individual, but it also affects the entire family. Finally, I wanted to personalize the story so that everyone could understand the pain, frustration, and, most importantly, the humor that comes with living with the disease. Humor, in many ways, is our salvation. If we cannot laugh at ourselves, than it would indeed be a terrible disease.
Well, after a slow start, readership is picking up and more people are commenting (either by email or in the comments section at the bottom of each article). Almost 1,100 people from 51 countries have visited my blog and there has been over 4,100 page reads. That is not a lot in the blogging world, but to me it still seems to be a lot. An even more interesting statistic is that January's readership is up 13% over December (my previous highest month).
When I first conceived the idea, I never knew what to expect or whether I would have the discipline to continue to write three-plus times a week. Several times I did not believe I had another topic to write about in me. Then, magically, someone posts a comment (or sends an email) telling me how much he or she liked an article or they share some useful tip that might help me. Just knowing that someone still finds the topics and my style interesting, informative and/or enjoyable seems to keep me going.
So, today I am stepping back from my normal articles to say, THANK YOU for reading my blog. And, thanks to everyone who has commented. Comments, whether positive or negative, are important to me. I believe comments add much to the articles because they reflect support, another point of view, an experience, or an issue that others need to consider. I would also be interested in your thoughts on other topics that might be of interest.
In closing, let me say again, please feel free to comment on my articles. By taking a moment to share your thoughts you add much to these articles. The articles then become more than just something I said or believe. In addition, by adding a comment, you might just be helping the next reader.
And always remember, you are not alone!
One way or another, we are all living with Kennedy's Disease because we now know someone who shares that unique DNA mutation.BTW: This coming Sunday's article deals with Muscle Memory. I would really value your comments on that subject because it intrigues me.
Hello!
ReplyDeleteJust wanted to say that I´m appriceate your blog.
My Father has Kennedy´s and here in Sweden it´s a
very, very unknown disease. I think they know about
15 people in all. So it´s nice to read about someone how really knows what you are dealing with. My father is now 76 years old and finally in a wheelchair,( he´s a bit stubborn) which I think feels very good and safe.
Sometimes I don´t know if he´s weaknesses is from the disease or from getting older. I haven´t read any research about Kenedys and getting old.
Excuse my english, I´m much better in Swedish
(in all ways)
Best regards!
Anna
Bruce:
ReplyDeleteReading your blog has become part of my daily routine (after checking how much I've lost in the Stock Market).
Your writing style and the way you express your feelings, experiences, enthusiasm and overall outlook in our fight against KD is something I look forward to every day.
Luis Shimomura
Anna, thanks for your comments. Yes, there have not been any studies that I am aware of following the progression of the disease as a person ages. Since not everyone progresses at the same rate or begins seeing symptoms around the same time, it is difficult to study and come up with anything conclusive.
ReplyDelete76 and just now starting to use a wheelchair ... he has done well.
Let me know if you have any topics covered or need additional information on Kennedy's Disease. Thanks again.
Luis, you are most kind. Comments like yours help me to realize that perhaps I can make a difference.
ReplyDeleteI hope the stock market turns around again and will remain an inspiration (something positive) to all of us investors.
Bruce, yours is the only blog I read on a regular basis, and I never miss a posting. I often hesitate to comment because I don't want to seem to hog the 'comments' section, so I'm glad to see others commenting too! Your blog provides great insight and information on KD. I really appreciate and value your efforts and encourage you to continue. Thank you Bruce!
ReplyDeleteRobbie, thank you for your comments and continued support. In the beginning there were only two people that ever commented and you were one of the two.
ReplyDeleteHow about that "Bionic Breakthrough" post? That is pretty exciting stuff and just shows how far medicine and technology have linked together to make things happen that were only dreamed of before. Dr. Paul Taylor, a member of our SRB, was even blown away with this technology.