Tuesday, April 27, 2010

Please do not mention this to my wife …

but … I am at a loss for words. YIKES!

I am sitting here this morning trying to come up with a new topic. One thing I have learned about writing is that when you are not inspired, just start writing whatever comes to mind and then go with the flow. So here we go …

It is hard to believe that over the last eight months I have written 130 articles related to Kennedy's Disease and living with Kennedy's Disease. The articles have covered a wide range of subjects from embarrassing moments to interviews with researchers. Some of the most interesting articles for me are those concerning current research. It seems like every time I write one of these articles I learn something in the process. I definitely am not an expert on Kennedy's Disease, but I know enough to be dangerous.

I find it interesting that my audience continues to grow (up 9% this month). Over the last thirty days there have been 1,523 page views with visitors reading an average of 1.9 pages per visit. Almost fifty percent of the page views were by first time visitors. The two stories on IGF-1 (Part I and II) were the most read articles during this period. Readership has increased to a daily range of 16-30 visitors with the average being 22. This is wonderful news for me, because I was not sure how many people might be interested in my ramblings. It just shows that there are insomniacs out there that need something other than counting sheep to put them to sleep.

I keep on looking for ways to improve the quality of my articles. I want readers to find them interesting and entertaining, but also educational. For years I found it difficult to talk openly about Kennedy's Disease, but fortunately I was able to break away from my fears and apprehensions and just lay it out there. That is not saying that I still do not have taboo subjects. They are far fewer than before, but they are still there. My hope is that someday soon I can break through these last few barriers and write openly about those topics. What topics, you ask? You will have to stick around to find out.

To improve this blog, however, I need your help. I would appreciate it if you would let me know (by adding a comment or sending me an email) what subjects you would like tackled or questions you have always wanted to ask, but haven't. Your help will steer me in the right direction and perhaps further improve my knowledge of the disease as well as what it is like living with it. So, don't be bashful and let me know what you think. Besides continuing to keep you updated with current research …

  • What subjects would you like to know more about?
  • What questions do you still have that I might be able to help answer or find someone that can answer them for you?
  • How can I improve this blog?
Oh, and reference my asking you to not mention this little problem to my wife; go for it, she would never believe it anyway.


  1. Thanks Bruce. Judging from the cartoon, I surmise that this blog is partially directed at me because I have not provided any recent commentary to your other articles. :) Since I haven't seen any feedback on my contributions, I'm not sure if I should continue writing.

    I think your wife already knows when you are at a loss for words. My wife always knows. Isn't it strange though that wives are never at a loss for words?

    Yes, I too may be at a loss for words at times, but more often I don't write because I have other more important things to do, and I am going to do them until I cannot physically perform those functions. My writing is usually reserved for rainy or snowy days.

    I find your articles interesting, probably because I am going through many of the same issues, or may experience them in the future. It is not just about the disease, research and treatment, it is also about daily living. Finding new ways to do things, choices in new equipment, etc., are all part of living with KD and are equally important subjects. I also find them funny at times, even though the humor may be sarcastic or subtle. Others may not see the humor because they don't deal with KD on a daily basis. We have to see the humor in some experiences or we would probably go crazy (CP).

    I liken your blog to a new business. It will be slow when you first open, but as word gets around and more customers discover what you have to offer, business increases. They will continue to come, and more customers will come if they like the product. Keep the stock fresh and keep adding new things as appropriate. I think this is what the numbers are showing.

    As far as future articles; continue to write about any and all the subjects you have covered so far, and any new ones too. You might do a follow-up article on your wheelchair purchase after you have used it for six months, and a year, to let the readers know if it still meets your expectations (the automotive industry publishes this data on their vehicles). Give us an update on your van purchase when you get it. Maybe get a couple more "Guest Bloggers" - if you can find someone who isn't bashful - to offer a different perspective.

    So, how did I do for having a loss for words? Kinda looks like the ramblings of an old man. I'll try to do better.

  2. Thanks, Stan, for commenting and expressing your perspectives. I appreciate your support also. I need regular readers of my blog that are willing to comment and add their two cents worth.

  3. Hi Bruce

    First of all let me introduce myself. My name is Isabel and I have a very good friend diagnosed since last February, Kennedy disease. My friend is doctor and he search in Spain (our country) some information about the reabilitation gymnastics, but the information regarding this illness is slender. He visited three good neurologist in Spain because he didn't think it was ELA and finally, genetic testing has shown that it was Kennedy's disease.

    Could you publish in your blog or send me some information about rehabilitation gymnastics, if you have it?

    Your blog is very interesting and very encouraging. I like it a lot.

    Thanks and apologies for my bad English, I try to improve it but is a bit difficult.


  4. Isabel, thank you for reading my blog and commenting. I will email you what information I have on the subject.

  5. Dear Bruce - I really enjoy your blog and think that whatever you write about is interesting. My DH has KD, and what comes to mind is that I would like to know more about financial planning etc. for the future. You have mentioned that because of your foresight, your wife did not have to go back to work, etc. Maybe you have blogged about this before; I didn't check the archives, sorry. My DH is 42, diagnosed at 40. We have 5 kiddos all under the age of 9. Currently I'm a stay-at-home mom, and hope to stay this way for as long as possible. My DH has a desk job, so hopefully he can continue to work for a while. Thanks so much for your help. Carolyn

  6. Carolyn, thanks for reading my blog and commenting. Yes, financial planning is critically important especially at your ages. I will try to put an article together for this Sunday post.

    In short, we took a five pronged approach.
    1. Short and Long-Term Disability Insurance
    2. Retirement Planning
    3. Annual Reviews
    4. Focus on the future
    5. Determine when to begin discussions with your company

    Check Sunday's article for more details.


Please feel free to comment. 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 by sharing your opinion, experience, or a helpful tip. You can comment below or by sending me an email. I look forward to hearing from you.