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psychological research
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Registered: 09-15-2008
Posts: 5
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Hello everyone,

I was wondering if you could help me. I recently joined as I'm having a difficult time 'coping' with my dad's Kennedy's. I feel quite helpless to do anything to help, but I'm now starting my third year in a Psychology degree and thinking about my dissertation. I would like to do a study into the mental states of people who have Kennedy's, but I'm having a hard time finding any strictly psychological research. Does anyone know of any? Could you point me in any direction? I'd really appreciate any help anyone can give.

Thank you.

Aoife Smiler
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Good Morning,

I am not aware of any studies in that area, but have sent an email to our KDA Scientific Review Board asking if they are aware of any such studies.

I think it is a great topic and would like to discuss this opportunity more with you since I wrote something about this aspect in my short story on KD.
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Good afternoon. I heard back from several members of the SRB and they are not aware of any psychological studies done on patients with KD. Dr. Fischbeck thought that it would be interesting.

In a short story I wrote, I mentioned the psychological impact on us living with KD.
quote:
Kennedy’s Disease takes its toll on people mentally and emotionally as well as physically. Everyone tends to focus on the physical manifestations of the disease and not much is said about the psychological aspects of it. In some respects, the psychological aspects of the disease are far worse than the physical. As the muscle groups weaken and basic movements become more difficult, thoughts and feelings also begin to deteriorate. Acceptance is often the most difficult aspect of Kennedy’s Disease. Acceptance is a hard pill to swallow. Even more difficult is admitting to others that you have the disease. It took me years just to tell my family and friends. It took even longer to admit it to my supervisor and co-workers. The last thing I wanted was to be considered physically handicapped … someone that could not do his job. I did not want people looking at me as different or considering me less than a “man.”


If you do decide to move ahead, let us know and perhaps we can round up some candidates that would be interested in supporting your work.
Bruce
Registered: 09-15-2008
Posts: 5
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Bruce,

Thank you so much for your encouraging reply and inquiring to the review board on my behalf. I've been trying to find a research tool to measure psychological well-being. I was trying to think about factors that are inside our control that would help improve the happiness or mental quality of life of people with KD. Do you have you any suggestions? I still haven't met with my supervisor, but I'm optimistic.

I've read your story before and it's very touching. Thank you for including your extract and for your support. I'll get back to you as soon as I know what's happening.

Take Care Smiler
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Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614
Tel: 1-855-532-7762
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