Tuesday, March 16, 2010

Is CP associated with KD?


I receive Google Alerts for any internet article related to Kennedy's Disease. Some of these alerts are interesting. I do not understand all of the research articles (Greek to me). The ones I do not understand I send these to a KDA board member who is a biology professor and ask him to explain it to me. There are always articles that have nothing to do with Kennedy's Disease except to reference it as a similar condition or similar symptoms. Then, occasionally, I receive an alert that really has me baffled.

In the last couple of months, several abstracts hit the alerts that relate to cognitive problems (CP) with those of us with Kennedy's Disease. When I read the transcript, I became frustrated because I find it hard to believe anyone can publish research results claiming certain cognitive issues in people with KD when only a small group of people (some related) were involved and the candidates were only monitored for a short period of time. One study referenced two patients studied in 1998. Another 2005 study speculates that perhaps cognitive issues (dementia) might also be present in people with Kennedy's Disease because of a single patient with KD that had these problems. It does not say there is a correlation, it just says that "perhaps" this is a problem and needs to be studied. A 2009 study of one man with KD states he complains of forgetfulness and has an altered social conduct. This study suggests that the disease may cause mild cognitive and behavioral changes as part of the disease's clinical manifestation.

Now, these studies have nothing to do with what my wife has to say about me ("You don't have a brain in your head!") when I do something stupid. She is normally right, but she is not referring to my cognitive ability. No, these studies are talking about real cognitive issues. Can you blame me for being a little defensive about this issue? We have enough problems without having to add "cognitive issues" to our list of symptoms. Besides, I do not want to give my wife any more ammunition.

I can say that I do not totally understand some of the findings in these studies (Greek to me). The "conclusions," however, are pretty clear. I did send one of the studies to the biology professor and he felt similarly to me that these were not realistic studies to draw any major conclusions from because of the small groups involved (perhaps he is also being defensive). He did joke that he could now tell people that he had a cognitive condition called Kennedy's Disease when he forgets something.

It just seems to me that dementia and other cognitive issues would be an issue with a small percentage of people with Kennedy's Disease, but nothing greater than the same issues with the general population. Why would we be any different? I know many people with Kennedy's Disease. Yes, as the disease progresses, most of us have a nasal voice and some facial distortion because of bulbar muscle issues. That, does not mean we have cognitive issues that are associated with Kennedy's Disease.

Am I being defensive? What do you think?

4 comments:

  1. I can fully understand your defensive reaction. I have KD and also, have high blood pressure- does this mean there is a link for all people with KD, I very much doubt it. We have enough problems with Kennedys without linking dementia and any other problem which affects the population at large. By the way, your blog is great so please keep it up.

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  2. Thanks for taking the time to comment and for your kind words.

    Yes, it frustrates me when studies are published that appear to not be well thought through and have a very small study-group.

    I felt that if a small enough group of participants is used, they can associate heart, lung, and kidney disease as well as almost anything else with KD. People tend to forget that except for having the defective CAG in our DNA we are just like any other person susceptible to any disease or condition.

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  3. Now Bruce, after reading your blog I had something really important to say about this, but I have clean forgotten what it was. Now, what was I about to do??!!

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  4. Denis, :-)
    Don't worry. It will come back to you in an inappropriate place and time so that by the time you are back in front of your computer you will have forgot it again. Such is the joy of life!

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