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  • 84 y/o Mom just diagnosed

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    Old 12-02-2016, 11:51 PM   #1
    ALS daughter
    Join Date: Dec 2016
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    ALS daughter HB User
    Question 84 y/o Mom just diagnosed

    After 9 months of tests, which our original neurologist diagnosed as unknown but not ALS, we saw an excellent neurologist who did diagnose her with ALS. She has weakness with her arms/hands and legs/feet but the worst is her mouth. Speaking has become almost impossible most days, the best is some mornings she can get a few words out. Eating has become a real problem as well. My 85 y/o Father has dementia and doesn't quite comprehend what is happening with her. The neurologist would like her to participate in the hospitals' clinic but my Mom doesn't want to do any more tests or use the clinic.
    What she is really looking for is a ballpark timeline and what to expect as this progresses. Physicians won't give any direct answers and she's frustrated to the point of tears. Does anyone know where I can get real answers?

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    Old 12-03-2016, 03:17 PM   #2
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    Re: 84 y/o Mom just diagnosed

    Hello, I am sorry you all are going through this. It seems especially cruel that your parents have gone through so much and now are dealing with dementia and ALS in their 80's.

    There is no concrete timeline. Since you mention your mom has special difficulty with speech and oral skills, this could get dangerous very quickly. Aspiration of food could lead to choking or aspiration pneumonia at worst or cause a slow deterioration due to malnutrition, as it will only become more difficult to eat. Since her oral motor muscles are involved, it is possible that breathing will become affected sooner rather than later as well. Of course the legs and hands will become weaker as well, and equipment for mobility will likely eventually be needed.

    A timeline would depend on what measures you as a family decide to take. A feeding tube can be placed to help prevent aspiration and keep up with nutritional needs. There are breathing devices available from a bi-pap to help provide a continuous flow of oxygen to complete ventilator assistance.

    Being seen in the clinic may not necessarily mean your mom would be subjected to further invasive tests. They could, however, provide equipment and devices and procedures to increase the quality and quantity of life. I would suggest that you find someone you can communicate easily with to help guide you through the many potential decisions that lie ahead.

    I hope this helps. Again, I am so sorry you are going through this.

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