Kennedys Disease Community
here is new member, search way to live with KDA patient

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03-16-2014, 10:41 PM
maggie zhang
here is new member, search way to live with KDA patient
Hello Everyone, here is maggie from China. I am happy that I can have this change to communicate with you,. for so long time, I did not pose any message, because I did not get the result of testing from My elder brother, but now, he is really the suffer, but he is only 37 years old, so I am very sorrow that he illed, especially this disease, it is rarely very difficult to control, how to communicate with him, because I really do not want to face him especially he shown a very pain feeling to me.
I prefer to have this disease rather him. I really want to help him. because I can get high education because his effort even selling his blood when he is 20 years old. We study and work hard, so we can move from coutryside to big city now.

Now I am very sorrow now, how to live in futher? now he had some Signs of Shrinking in his left leg and tongue. when he climb stairs, he is really very slow and tightless.

how I can help him? who can tell me

thanks in advance


unlucky, I am the member who had this disease
03-17-2014, 10:40 AM
Maggie, thank you for posting your thoughts in the KDA Forum. I believe it is important to lightly exercise each muscle group to help keep the motor neurons firing and the muscle tissue stimulated and healthy.

Ask your brother's doctor to recommend a physical therapist to help develop an exercise program. I find I have far less soreness and pain if I perform exercises daily. Just make certain that he doesn't overdo it. There is an exercise guide on the KDA website. Click on Share Information and then KDA Information Guides.
03-26-2014, 04:24 AM
maggie zhang
hello Bruce

thank you very very much

at first, I am worry about my parents., especially my mother, who is very sentative, but now., last week, she known all the matter, and I encourage them for new drugs for trial testing even I am not sure of it. But I am looking forward good medicine can be chosen now.

unlucky, I am the member who had this disease