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AliCat

New member
Joined
Sep 3, 2018
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5
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Loved one DX
Diagnosis
08/2018
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US
State
MA
My mother found out that she’ll be able to start radicava soon and Medicare is going to cover the entire cost! She also had a feeding tube put in last week at Mass General and it went well. She can still eat relatively normally but gets tired after a while and has lost a little weight. She seems to be tolerating the feeding tube well so far.

The biggest change I’ve noticed is since she started taking Nuedexta. She is bulbar onset and she has had noticeable improvement in her speech and saliva since she started taking it. We noticed a difference after only two days! It’s so nice to see her not have to struggle as much to speak!

Alison
 

Nikki J

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Mar 22, 2012
Messages
7,252
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Happy for you Alison. Anecdotally the nuedexta effect is usually about 6 months. I hope she does even better. Glad she gets to try radicava and the feeding tube went well. If she can keep her weight up that is a big help.

Thanks for sharing
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,530
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
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home
Great news tripled! (feeding tube as well)
I think the more that can be done to support early, the better the chance of a slower progression or at least an increased quality of life for however long.

Take every ray of sunshine and make the most!
 
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