I Can't Take it Anymore and Need Advise and Help

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wewillbeatthis

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Hello ALS Family!

I have just about lost my mind over the last few weeks. Dad has had some ups and downs with work and for this he has gone through the flare up sort of speak with his legs, speech, and mood. Things are looking up at work and his legs are what they have been for years very little balence the use of a walker or carriage to get around, the cane to get in out of the house and up and down the stairs. This has been the same for at least well cane for 4 years, walker for two years. The speech well it is not as slurred as it was a week a ago. However, it is slow, very horse, and a little slurred on some words like p's and l's and double l's and p's especially. His upper body is fine and his eating and breathing are as well thank GOD.... His mood well he is still stressed because he does his sighing still....

So this is my frustration you can tell when dad talks he sounds nasal and horse and a tiny bit slurred due to how dry his mouth is. His tongue and lips are so dry.... He drinks water fine but just does not do it and when he does he sounds so much better. Why is this and what can I do. I can no longer sit around and watch him not help himself by drinking water and keeping his palete wet. The doctor and speech pathologist both told him that it is important for everyone to drink water all day long especially when it is hot to stay hydrated. However it is especially important for people with MND due to the fact that the palate muscles weaken and keeping it wet helps it out....

Does this sound normal and if so what can I do?
 

brooksea

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Water is a thin liquid. PALS need something thick to swallow. He may be having trouble swallowing the water and just doesn't want y'all to know. You may need a thickener to add to his liquids to help it go down. I'm surprised the doc and hasn't mentioned this to y'all.

So this is my frustration you can tell when dad talks he sounds nasal and horse and a tiny bit slurred due to how dry his mouth is.

As for keeping the palate wet to alleviate the slurred speech - doubt that it really helps in the major scheme of bulbar symptoms. These are bulbar symptoms. It doesn't matter how many bottled waters my husband drinks during the day, he still slurs his speech! This will progressively get worse and it can depend on his measure of fatigue.

Are you uncomfortable with your Dad's speech? It can be embarrassing because you don't want people to think the PALS is drunk! LOL Believe me I've been through it many times and it is a pisser!

I wish you and your family well!
 

Shatzie

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For me, if I do not drink enough fluids and my mouth gets even slightly dry, my speech becomes worse. When I started thickening my liquids, I found I didn't want to drink as much because of the taste and texture. Within a day or two my voice became worse. One day I got tired of drinking thickened water and I grabbed a regular water bottle and chugged it down. I know that was a no-no for me, but within a half hour the increased slurring I had had for the last several days went away. So my conclusion is that water will not bring back what you have already lost, but being hydrated may help you stay at the optimum speech ability that you have at any given time.
 

DeeMichelle

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This is very sad and difficult to deal with. My Dad has bulbar symptoms and has very little speech left now. To be honest drinking water never made much difference. You can get hydration from other drinks and foods (smooothies, milk shake, yoghurt, fruit, veg, soups, stews) my Dad drinks a fruit cordial mixed with water it's quite sweet. Is there anything your Dad likes the taste of it doesn't have to be water?

Dad also likes the nutritious drinks you can get on prescription e.g. Fortisip.

My Dad's voice would be more slurred when tired and always better in the morning. With Bulbar symptoms it eventually becomes difficult to swallow and as already said thin liquids can be a huge problem so can drinking with straws because drinks go down too quickly. My Dad finds it hard to get liquids to go down because his tongue is frozen and he has atrophy in facial muscles.

On advice from a Speech Therapist my Dad now drinks with his chin pointing/pressed down towards his chest rather than throwing his head back. This tip and getting the prescribed nutritious drinks have helped a lot. My Dad had lost a lot of weight and didn't eat much. Nagging didn't work, but eventually we sorted a load of meals that were easy for him to eat and that he likes and now he's eating a really good diet. Still he gets low and sort of gives up a bit and I think that's part of the process for some people.

I'm sorry it is all so hard.
D
 

amywiller

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I can't take it anymore

Hi there,

As a speech pathologist myself, what you are describing with the combination of hoarseness, nasal and some slurring almost exactly describes the kind of speech difficulty (dysarthria) that develops in ALS. The water issue is difficult because of what others have posted about the eventual difficulty PALS can have in swallowing thin liquids. The chin tuck down method for swallowing and the move to slightly thicker liquids can be helpful, as others have said there are other ways to hydrate besides water. Eventually as the atrophy continues the weakness will result in speech problems regardless of how hydrated he is, but it is possible that the wetness can help a little because certainly if he is taking enough fluids it will also thin his saliva or phlegm which can also get in the way of our best speech.

Have you been able to explore any alternative ways to be clear in meaning when speech is difficult? we use gestures and alphabet or writing and there are many more techniques, some of which use technology in a more advanced way.

It is a hard process to watch, I understand from both sides as both a therapist and as the daughter of someone with ALS. 3 of my aunts have had it too.

Hope this helps maybe a little bit.
 

CindyM

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What causes the hoarseness? I am short of breath due to weakened diaphragm and have trouble projecting my voice. Lately I feel tightness in my vocal cords, like I feel whenever I used to get laryngitis, though I have not had that in years. If this develops into laryngitis I hope it will not last.

I always thought PALS had trouble talking due to slurring and no muscles to form the words. I did not expect to have trouble being able to speak above a whisper.
 
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