not much time left

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karenb

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PALS
State
Florida
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Milton
My mom was officially diagnosed with ALS 2 months ago, although she has had symptoms much longer. Her speach is worsening, she is short of breath and is overall weakening. The Dr. just told her she has 1 1/2 - 2 years to live. I will be spending a great deal of time with her even though I live 2000 miles away. She is an intelligent woman with a good sense of humor. Does anyone have any suggestions on how to prepare for what is to come? Also, does trauma trigger ALS sometimes? Thanks for your help.
 

OhioArt2

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CALS
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OH
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Toledo
karenb said:
Also, does trauma trigger ALS sometimes? Thanks for your help.

Hi Karen!

I feel for the journey you are on.
My mom was diagnosed this past March - was told the same thing (1-2 yrs)...
She elected to have a trach and feeding tube in only after she could barely catch her breath and weighed in at a whopping 99 pounds.

The nuerologist DID tell us that it is believed sometimes extreme stress will trigger ALS.

Mom was carer to my father for 6 years. She showed symptoms for a year but would never go to the DR with the excuse that she was too busy caring for DAD.
Well... he passed in March. She was diagnosed (officially) the first week of April.

... and what a long strange trip it's been.
 

CindyM

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Learn about ALS
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Hello Karen. Sorry to hear about your Mom. One thing we have found on this forum is that sometimes the Docs are wrong. True, the average timeframe from date of DX is 2-5 years but there are many on this forum who have been living with ALS for 10 to 15 years. It is great that you plan on sepnding a lot of time with her, though. Both of you will appreciate this in the long run. Cindy
 

angels

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Sep 12, 2007
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Loved one DX
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US
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MD
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Olney
Hi Karen,
I am struggling with many of the same things you are, which is why I decided to finally go this route, and try to find ways of dealing with losing my Dad so fast. He was diagnosed in Nov 06 and now we hope that he will make it til Christmas, however it's not likely. There are things they can do to make them more comfortable depending on what your mom wants. My Dad doesn't want a trach tube and is deciding about the feeding tube, but they keep him on Prednisone, steroid, to try to help with inflammation, and although it's minimal because of where he is with the ALS now, there is a difference. Please feel free to contact me, as I have tried to find/learn how to make sure my Dad is comfortable, and what they can do to ensure that. I wish you and your family the very best.
 

joelc

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Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
Like Cindy said, doctors are often wrong! I was told 2 years, and that was 2 years and one month ago now. Don't let them talk you into any time frame. I refused to lay down and die.......I am still getting around on my own. Yes, life is getting more challenging, but help her maintain a positive outlook and she should live much longer. Enjoy her as much and for as long as you can.

Is there anything that can be done to shorten the distance between you?

God Bless
 
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