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Blairefree35

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My 82 year old grandmother was diagnosed August 1st after falling July 19th. When we took her to the hospital to make sure she hadn’t broken anything (which she didn’t). I never imagined this diagnosis.

In the ER, she couldn’t hold or lift her right arm at all and she was in able to lift her right foot as high off the bed, but could some. The toes on her right foot were also drawn back forcing an arch and causing her a lot of pain. She had no pain in her arm. Additionally, she failed the swallowing test and after they told her that she mentioned that she had been having some issues swallowing and drooling for the past year. Her voice isn’t slurred at this point.

After not finding anything on multiple CT and MRI’s, a neurologist was consulted who then consulted with Vanderbilt‘s neurology team and they set up a transfer. She was transferred on July 29th and had EMG testing and then on August 1 we were told that her were EMG results were consistent with bulbar onset ALS. They told us to not expect any improvement in her mobility (she had been completely mobile prior to her fall and was now bedridden) or swallowing and that she wouldn’t get any better.

She had a PEG tube placed prior to discharge and has been in a skilled nursing facility since August 4. She has done very well there and has made a noticeable turn in regaining her strength and her mobility. She is able to get to the bathroom with a walker (and assistance of a nurse tech) and can lift and hold her right arm up better than before (scratch her head, brush her teeth, etc). Her speech therapist also told her that she will be able to eat some oatmeal soon! This is all encouraging, but also confusing, it seems like she is getting better. I’m trying not to get my hopes up or be naive.

She will go to the ALS clinic in two months to see how things are progressing and we are meeting with someone from the ALS association Monday. I thought I’d ask about a wheelchair and see if they had any suggestions of some other tools/aids that we need to get in preparation of her future needs. I read here to try and anticipate needs and right now I don’t think I could guess. I’d love to hear from you all as well as to what I can be advocating for getting her.

I have appreciated this forum very much and have read many posts while sitting beside my nana as she rested. It gave me comfort to have information and my grandmother is very much the same way.

Thank you for reading.
 

lgelb

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Hi, Nashville, sorry you have to be here but glad you found us.

It's possible that the fall was a shock to your grandmother's system and that because she had been having swallowing issues, her nutrition was compromised before the fall. Now that she has the feeding tube, and perhaps more support getting around/overall, that might account for her improvement.

I'm not totally clear if anyone but the Vandy neuro confirmed the ALS diagnosis? We do advise a second opinion always. Given what you describe, an obvious diagnosis to have ruled out is a silent stroke, but that would look very different on the EMG and she did have imaging.

It's not, of course, out of the question that she was affected by a small undetectable stroke some time in the past and still has ALS as well. But what is most important is supporting whatever course her disease takes.

So is the plan that she stays in a facility or comes home? Where and with whom?

Best,
Laurie
 
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KarenNWendyn

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Sorry to have to welcome you and your grandma here. I’m glad she had at least 81 years of living without ALS. May the rest of her journey be as smooth as it possibly can.
 

KimT

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Things she hurt in the fall can improve if that part of her body has not been affected by ALS. I sprained my "good leg" ankle about a year after my diagnosis and was told I'd be in a power wheelchair but it healed enough for me to walk again.

Has her breathing been evaluated? I think it's great she had the tube placed. Proper nourishment will help her mend and she won't need to worry about another procedure down the road.
 
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