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Bernadette

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Nov 21, 2005
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My sister was diagnosed with ALS in Jan. 2005. Her speech was her first symptom. The muscles in her mouth, throat and tongue progressed rapidly. She has now lost the ability to communicate verbally. A feeding tube was placed in July and she was advised never to take anything by mouth. In August, her ability to walk and use her hands began to cause her difficulty. She can still walk with assiistance and uses the wheel chair only when we take her for an outing.

At the recent visit to the ALS neurologist, she was asked if she had thought about the tracheotomy, which she has not. We were asked to discuss it with the pulmonary specialist this coming week. I have many questions for the doctor, but I would like to hear the pros and cons from either another patient or a caregiver.

My sister understands that the time could come that not having it could cause her death. She is adement that she does not want to be on any type of life support. Before she makes a final decision, I would like for her to be informed and have as much knowledge as possible.

I would appreciate any help you can provide in this matter.
 
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