Recent content by AnxiousWaiting

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    Parkinson's and FALS?

    Sorry! Trying to delete a duplicate entry.
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    Parkinson's and FALS?

    Nikki, Thanks for the quick response. Well, my mother's neuromuscular specialist does not suspect FALS. She has dismissed my grandmother's Parkinsons. However, she understands why I'd be concerned and recognizes that I may get some degree of relief if the mutation is absent. Thus she said...
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    Parkinson's and FALS?

    Thanks for the responses. Nikki -- My maternal grandmother had two brothers who also died of Parkinson's. But they were both boxers and developed the disease in their 80's. My mother has a first cousin who has muscular dystrophy. He was diagnosed at 40 and is still alive in his 70's. We...
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    Parkinson's and FALS?

    Hello, I wanted to know about the value of getting genetic testing for my mother, who is 79 and in the final stages of ALS, and for me, a 40 year old father of 2. My maternal grandmother was diagnosed with Parkinson's in Asia at the age of 58. This was in the 1970's. she developed dementia...
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    FALS -- changing symptoms?

    Astugi and Mnatale, thanks for your comments. Mnatale, I'm very sorry for your loss. As a fellow CALS, I am struggling daily with my PALS' illness. It's devastating. Every few days there is a new loss. Did your husband have any other symptoms at the time of the clean EMG's? Was it just...
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    FALS -- changing symptoms?

    I hate to post here. My focus in this forum has been on getting advice for my mother, who has ALS. But I'd like to know if I should seek yet another opinion and get another EMG for myself. Also, I'd like to know what peoples' experience has been with quick, brief EMGs. My mother has ALS...
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    Hospice

    On the matter of attendant's denial of the diagnosis and denial in the family, I have found it to be insurmountable. No amount of tests, reasoning or conversations with doctors can convince people of things they don't want to believe. Either the medical system is corrupt or the illness is just...
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    Hi! How do I PM you? When I click on your username I only get the option to submit a visitor's...

    Hi! How do I PM you? When I click on your username I only get the option to submit a visitor's message like this.
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    Family Members in Denial

    Yes, BIPAP. Sorry.
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    Hospice

    I had posted earlier about denial among family members about my PALS ( 79 year old woman diagnosed in 2013 with ALS). I took her to the clinic yesterday. Her FVC is 36. She has decent strength in her hands and forearms; voice is strong; swallowing is worse. The neurologist recommended...
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    Family Members in Denial

    Thanks for all your help. We have a PT coming to continue my mother's regular PT sessions starting Monday. The OT and speech therapy assessments will occur shortly after that. I took my mother to the ALS clinic. They found that her FVC is 36. (Mother does not want feeding tube or ventilator...
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    Family Members in Denial

    Paul -- really appreciate the post. I think I will try the approach of not identifying the diagnosis but pointing my mother in the direction of the care she needs. Small doses of information. She is already on xanax and effexor for anxiety and depression. But these medications only go so far...
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    Hi Laurie, is it possible to PM you? I can't figure out how to do that.

    Hi Laurie, is it possible to PM you? I can't figure out how to do that.
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    Family Members in Denial

    Thank you for these great suggestions. I will look into the home health agency and also nurses that could help with the situation. I have already provided materials on ALS to the attendant. But it really hasn't had an impact.
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    Family Members in Denial

    Thank you for all the input and perspective. It's tough to be frank with my mother given the denial all around me. I've learned that denial is contagious. Thank you for all the information about feeding tubes. I had no idea that a vent could provide an extra 6 plus years of life. At age 79...
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