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lmillerrn

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Mi
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Cedar Springs
My father had a disgnosis of ALS until Friday, now they believe it's Kennedy's Disease. I'm not sure what to think. He has severe mouth, jaw and swallowing impairment with frequent choking on food. He has had the coughing and swallowing problem for several years and until 2 yrs ago had mild symptoms in his extremities, except for weight loss. Now his balance is severly impaired with frequent falls, drops items, has had multiple bone fractures from falls, etc.
Does anyone has experience with Kennedys after an ALS diagnosis and what are the similarities and differences. Some sites report the same nerve and muscle deterioration butdiffernt rates and less fatality. But if swallowing and breathing are affected than how is there less severity, except maybe a slower progression?
Puzzled and looking for resources. I've done the internet searches but need real peoples experiences. thanks, laura daugther
 

BAGS

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Friend was DX
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GA
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Ringgold
I have Kennedy's Disease. You can find out more about the disease at the following website: http://www.kennedysdisease.org/index.html. If you have any specific questions, please don't hesitate to ask by sending the KDA an email at: [email protected].

John is correct, however. There is a simple DNA blood test that can be given today that will conclusively say whether it is Kennedy's Disease (SBMA).

There are several recommended exercises to keep the muscles toned, but without doing further damage. The throat, breathing, and face exercises are quite good and really help with swallowing. They can be found at: http://www.kennedysdisease.org/disc_exercise_tips.html.

The Kennedy's Disease Association (KDA) has a bi-weekly chat for men with the disease and a once a month chat for caregivers. You can find out more about the chats at: http://www.kennedysdisease.org/disc_chat.html. The KDA also has a Forum similar to this site's forum that you can post questions and comments. The link to the Forum is: Check out the http://kennedysdisease.groupee.net/groupee/forums. Check out the Open Forum discussion on "How are you dealing with Kennedy's Disease". It has several interesting comments.

Take care.
 
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