What goes first Speech or Eating

[Gelthling]

Glen, with mum slurred speech was the first thing anyone noticed - though we now know her behaviour was actually her first symptom from reading work reports from two years back..whether that's the Frontal lobe thing of MND I don't know. Her speech got progressively worse, and hasn't been able to speak for a few months, her swallowing is getting dramatically bad over the last 4-5 months. We find it is more she cant move her tongue and get food to her throat rather than actual chocking - she drinks tea and coke at the moment with spoonfuls (As I have signed off because she is in Palliative Care I'd rather her have what she wants) and has not have a coughing incident yet! Yet it is hard for her to keep it in her mouth - if that all makes sense.

 

[BethU]

First speech ... slurring I couldn't hear but others could.
Six months later ... trouble chewing and swallowing solids.
That cleared up 3 or 4 months later, but trouble swallowing liquids started.
My speech disappeared completely about 3 years after start of symptoms.
I gave up trying to swallow anything but saliva last fall (3 1/2 years).
Now my voice is pretty much gone, too ... can't raise it above a conversational level. (Last summer, I could still scream. Don't ask me how I know. :lol

 

[K-Town]

My hubby started with slurring then Volume levels took a dive. Swallowing came next. Both are declining at a rapid rate. Dx June 08 limb onset. Arms first, then legs. He can still transfer, but cannot do alone. 95percent dependant. The voice didn't start slurring until 1 year after diagnosed.

 

[t34gib]

For me it has been simultaneous. Slurred speech and mild swallowing problems. Now it is almost unintelligible speech and getting very difficult to eat. Mostly because I can't move it around to chew. Biting my jaws and lip constantly. Becoming too much trouble. Sitting here with the feeding tube going and eating a cookie very carefully. But still no limb involvement anywhere. Go figure. Not complaining at all. Although gets very frustrating not being able to speak and eat. Trying to get hubby used to hearing mu Iphone and computer speak instead of trying to get him to understand what I am trying to say. Oh well I am very grateful to be here and not in Haiti. We have a large population of Haitians here where I live in Florida. My heart goes out to them. I can't imagine the horror of it all. Feeling very blessed right now.

 

[KeeKer]

Glen my brother had almost the same as Barry. He had to tell the people at work because he sounded drunk and could of gotten fired. Otherwise seemed totally normal. Arms went last. Still had a little movement in one finger at the end. Glad to can still get your point across with your hands! That's important if there is no yell button handy.

 

[lisaann1170]

I'll add my two cents worth (or my dad's, I suppose).

For Dad, the two were simultaneous. He experienced a tingling in his throat and found that swallowing felt difficult at times. At the same time, his speech became slurred. I don't know that he noticed his speech issues as much as anyone else, though.

For what it's worth, those were his first symptoms.

 

[kelly]

Speech First, then swallowing, then legs and hands!

 

[nanette70]

what are the best ways you have found to communicate. i have a sister with als. that thankfully can still speak. is their something i can do to prepare in advance for this?

 

[thelma313]

Nanette, there are many speech devices to choose from. Your sister should bring this up with her doctor and she should have a speech therapist. When my dad was ready for his, he went to the hospital and the speech therapist had a variety of different gadgets for him to try. He chose the Dynavox software (a popular choice) on a small laptop. It has a touch screen with large easy buttons and is programmable so he had several commonly used phrases stored in it. My father was a complete stranger to computers so it was very new for him but he managed just fine. Some softwares, like the Etriloquist are even free to download on a regular laptop. A few members here even use speech applications on their iPhone or iTouch.

By the way, welcome to the forum and I am really sorry about your sister's diagnosed.

Rosella

 

[dldred]

Glen,

For my mom her speech was first, that is why she was diagnosed with a stroke at first. Her eating has gotten worse, but she can eat just about anything if she grinds it up a little. She finds it easier to write little notes when she is not understood.

Dana

 

[JOSIEM02]

Glen, my mother in law started with slurred speech and swallowing problems at the same time. Speech totally went first followed by PEG.

 

[chrismaya]

Speech first followed quite quickly by swallowing difficulties. (my mom)

 

[BethU]

what are the best ways you have found to communicate. i have a sister with als. that thankfully can still speak. is their something i can do to prepare in advance for this?

Nanette ... one of the best ways to prepare is "voice banking." Others on the forum have done this or are doing it. It involves recording her own voice with various words so that as her speech deteriorates, she can still speak in her own voice. I didn't do it, because by the time I finally admitted that things were going to get worse not better, my speech was already a mess.

There are threads discussing this; you can do a search for them.

 

[jennbenn]

my husband seems to be losing both equally as fast. both are very labored at this point.

 

[Phil M]

Everybody is different, but both of mine went at about the same time. If your not pegged yet, I would just as soon as you start loosing weight. Don't make the same mistake I did. I lost 70lbs before I got my peg, and it made it harder for my body to adjust.