if swallow starts to get affected is this a sign of it speeding up?

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bluebell

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Hi My gran was diagnosed recently and the neurologist said it looks like it is slow moving MND as her hand is totally unusable now..but that has been coming for a long time my gran feels. Now in the past few weeks her swallow is starting to be affected and she is coughing more and phlegm is coming up..We were all set for the scenario that this was going to be fine and a stroke or something else would be more likely to be the reason my gran passed on..denial i suppose. But now I am so scared, I dont know what to say or do, she is 78..
 

brooksea

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Bluebell,

So sorry your Gran has this disease!

I can only tell you my experience with my husband. His started with "swallowing" problem. But he can still eat, just takes smaller bites and longer to eat/more time to swallow. This has been going on since 12/2005. He is 48. So who can say about your Gran? ALS is so different in each patient! Just watch her closely when she's eating. She may have to start eating softer foods. Also there is something you can add to thin liquids to make them thicker so she doesn't aspirate them, but I can't think of the name of the stuff. Maybe someone else will chime in.

Are y'all in touch with an ALS clinic or ALS association. They will be a great help to you and your family. Can you tell us where you live? We could then direct you to your local chapter.

Wish you and your family well.

CJ
 

CindyM

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Hello BLuebell. Glad you found us. THis is a scary time for you and your family so feel free to ask about anything. We have a lot of members, some with ALS and some who are taking care of PALS and they will offer lots of tips and encouragement as you try to help your Gram. Keep in touch and let us know how it is going! Cindy
 

MtPockets

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Product called 'thick-it' is one I have heard of. Might want to do a search on the internet to see about it.
I hope this helps.
Product Features
  • Thick-It Original is for moderate thickening; Thick-It 2 is for double thickening
  • Thick-It dissolves easily without cooking
  • It is cornstarch-based, low in sodium, and neutral in taste
  • Makes liquids and pureed food easier to swallow and more appetizing
  • Won't clump and thickens hot or cold liquids or pureed foods There are several brands on the market.
God Bless
Capt. AL
 

little one

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swallowing difficulty!

My mom is having alot of trouble swallowing - there have been a couple of recipe books recomended to us however, of course, they are out of stock and we have ahd to order them in. Any good recipes or ideas in the mean time that anyone wants to share. It is so scay to see her struggling so much to do something I so take for granted!
 

Paigepsq

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Hello - I think the thickening agent is called something like aggrenox.
 

hboyajian

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I'm so sorry your gran is going through this. It can be time consuming to get enough nutrition when you have to take very small bites and chew so thoroughly that you can get them down. Eventually she may be unable to eat solid foods and need them blended. Food supplements such as Ensure can help if she is having trouble getting enough calories to maintain her weight. Any high calorie or high protein supplements (there are many options in powdered form that can be added to milk shakes or smoothies) can help with this as well. She may not yet be to this point, but it might be helpful to experiment to find out what she likes before it reaches a more critical point.
 
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