tiabye
Member
- Joined
- Feb 14, 2018
- Messages
- 16
- Reason
- Loved one DX
- Diagnosis
- 04/2015
- Country
- US
- State
- FL
- City
- Casselberry
Hi - My name is Michelle and my sister was diagnosed with ALS April 2015. She seems to have got it pretty bad and drawn out. At first it was just her tripping a lot, then she would just fall and couldn't get up, couldn't get off the toilet or out of bed without help. As it got worst and worst over the year, then in April 2015 finally was able to diagnose her with ALS. She has gone from a happy smiling sister to one that can't even hardly shake her head yes or no anymore. She is on a bipap 24/7 since August. We were told then that she didn't have much time left. Here we are in Feb and she is still with us. She is miserable though. Can't communicate at all anymore, just will stare off into space , if she is awake. She sleeps like 20 hours a day. I work at her house so I can help my mom, her primary caregiver, when she needs it and just to be here. My Brother and Aunt came down this week cause she had a bad week last week and we thought that was going to be the end. Not sure how long they are going to stay though as she seems to have been stable lately. She has no quality of life left. She can't go anywhere and when she is awake she is miserable 99% of the time. I feel like its the end but her heart rate is usually around 80 and her oxygen level is 97% with her mask on. We even took her mask off for 20 min last week and she stayed about 95% the whole time. Is anyone in this stage with their PALS? Just would be nice to talk to someone who is going through th same thing as all ALS patients seem to show different signs at different times, their life span is way different with each patient! This is just a crazy disease that doesn't make any sense to me. How can some people be gone 2 weeks after they are diagnosed and then others 20 years!?
What else do I need to know?! What else can we do to make her comfortable?
Thanks for listening!
What else do I need to know?! What else can we do to make her comfortable?
Thanks for listening!
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