Hello everyone. I am 53 and have just been diagnosed with Kennedy's disease. I am a little lost and do not know what to expect. I don't really have many symptoms. What took me to the neurologist was actually a loss of sensitivity in feet and hands. I have some loss of face movement for about 4 years now such as difficulty to smile, impossibility to whistle , etc (but I didn't think it was very important, until now, obviously). Any recently diagnosed members around or anybody else wishing to exchange?
Location: Lebanon, Ohio
I was diagnosed at age 56 in 2009 and had experienced some symptoms similar to what you described. I went to a neurologist because I was physically much weaker. I travelled a lot for my job and had great difficulty carrying a briefcase and laptop computer on and off the airplanes.
I suggest a one of your next steps should be to join the KDA to receive newsletters and other communications about KD. Here is a weblink https://www.kennedysdisease.or...-we-are/join-the-kda
Please also consider attending the 2022 KDA conference set for early November this year. It is in San Diego but you can attend it virtually from anywhere. another weblink https://kennedysdisease.org/li...ucational-symposiums
Thanks a lot for your message and info!
I will definitely try to attend the KDA conference (virtually because I live in France). I will also be joining KDA. So far I don't have any weakness, apart from the face movements, for which I will start some therapy next week. May I ask how are you doing now since your diagnose in 2009? are you still able to move around by yourself? I don't know if I should do some specific exercice or sport to try to keep my strength as long as possible. Taking into account that my symptoms started on the face I have to watch out my throat muscles as well, to avoid swallowing issues in the future... That's why I am starting face and throat muscle therapy as the first thing... any other suggestions/advice is welcome.
Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614