Tuesday, November 9, 2010

Is patience part of the acceptance process?

The KDA annual conference and educational symposium begins tomorrow in San Diego.  I wish I could have gone, but that length of travel is out of the question these days.  Unfortunately, we lost the heating system in our house yesterday (Brrrr!) and it is a little cool this morning making San Diego sound even more enticing.  The repairmen are here and I hope we will have heat soon.  In the meantime, I am wearing gloves and have a blanket wrapped around me trying to stay warm and keep my fingers operational enough to type this article.
The conference’s agenda looks very interesting this year and I am looking forward to hearing from some of the attendees afterwards.  I believe there are seventeen doctors and researchers attending and their presentations should be very interesting.  I hope the updates on ASC-J9 and IGF-1 will be positive.  They still appear to be the treatments with the most promise.  Dr. Taylor’s update on the recent research into the triggering mechanism for Kennedy’s Disease will also be interesting.  One thing I know for sure, attendees will leave the conference with a new sense of hope and a greater appreciation of what these researchers go through in their attempts to find a treatment for Kennedy’s Disease.

Patience - cat

Even now, with potential clinical trials close at hand, the possibility of a treatment is still at least a couple of years away.  Patience (not an attribute of mine) is difficult as you watch the disease progress.  Earlier in life, you felt there was still plenty of time.  Now days, with the progression at a point where mobility and capabilities are far more limited, another two or three years without a treatment seems daunting.  Yet, hoping, praying and waiting are really the only things we can do.

I asked the question in the header, “Is patience part of the acceptance process?”  As I mentioned, I have never been one to have a lot of patience.  I was a “type A” personality at work believing that, along with a little luck, you created your own breaks, and that sitting back and waiting is not the way to achieve your goals.  Yet, since I am not a researcher, I am forced to sit back and “patiently” wait. 

patience slogan

I did find one thing to help the process move along.  I can make a donation for Kennedy’s Disease research.  KDA research grants support the “front-line” troops (the researchers) helping them move ever closer to finding that needed treatment.

In the meantime, I will sit at my computer accepting that I have this condition and patiently waiting for the news we all want to hear.


  1. can you please give me any tips on boosting libido as kennedy's has buggerd it up....

  2. Thank you for reading my blog.

    Loss of libido is something that most of us men experience as the disease progresses. The subject is also a difficult one for most men to discuss. You did not mention your husband's age or when the onset of Kennedy's Disease began. If he is fairly young or onset has been fairly recent, other health related issues might be the cause. Other medications that he might be taking might also cause the problem.

    Since I am not a doctor, I recommend you and your husband have this discussion with your family doctor first to make certain that there is nothing else causing the condition. There are many potential health issues that could be the cause. Your doctor might have to refer your husband to a specialist for further testing and consultation.

    As you are probably aware, testosterone levels decrease as men age. Since the Kennedy's Disease mutation does not tolerate testosterone very well, it could be a combination of factors that have led to the issue. If the issue is related to impotence, a Sildenafil citrate type medication has been beneficial for some men with Kennedy's Disease. However, that also needs to be discussed with your doctor because of side-effects and tolerance.


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