Questions

[chrisroski]

As many of you know I am having my feeding tube put in on June 12th. For those that have had it done, did it seems to give you more energy, cause I just feel so tired & unmotivated. Can't seem to get anything done & when I do it is such an effort. Does it make any difference in energy levels. Also, do any of you smoke? If you do, do you think it makes you having more breathing problems? Also, those who have speech problems, how do you deal with not being understood by people, I just find this so frustrating. I don't know how to handle all this. I have always been so active, and now just feel like a limp dish rag. Any suggestions?:-

 

[HelenL]

chrisroski, though I can't help you with the feeding tube questions, I wanted to let you know that there are different text to speech programs that are available when you're ready to use them. Even Windows PCs have them...

Being less active and having to have people help with everything is one of the first casaulties of this disease... I can't even get the windows open or closed in my house anymore, and I'm still mobile... as long as I'm sitting on my scooter that is. Your expectations have to change as your needs change. The funny thing is, most of the folks on this forum are the ones who did so much, stayed active, etc. Maybe that's why we're here, and not sitting in the corner of the room.

At any rate, welcome to the forum since I haven't didn't see you before. This forum is a lifeline to me.

Good luck on your peg, and from what I hear, once you don't have to worry about getting the nutrition in, you can enjoy whatever eating you do much more.

 

[chrisroski]

Thanks so much for your reply. Yes this forum is very helpful. It is nice to communicate with people in the same boat. It is rather strange that most of us were the active ones, just doesn't make sense, does it, but as they say God works in mysterious ways. Please keep me informed on how you are doing & I will do the same. God Bless us All

 

[HelenL]

I'm doing ok, just can't walk at all anymore, and my hands are going... which is worse than the legs going I think. I'm in the Dex clinical trial, going into month 12 in June! Don't know for sure if I have the real meds of course, but I think I do, my progression is pretty slow.

There's also a voice banking website, which I haven't used... I know some folks have done it, but if you're already having a lot of trouble, you may just want to bank a few phrases, like "I love you", so it will be in your voice, and not a computer voice.

 

[panguinjen]

You will have more energy, but everyone is different... At least you should be able to keep weight on.

My husband uses a variety of devices to speak... Pen and paper, a whiteboard and marker, his iPhone and iPad with an app called speakit and compact speakers and a dynavox. The dynavox is heavy and better for sitting and holding.

Keep the questions coming... I wish I had known about the voice bank before it was too late. 8((

Jen

 

[malikinam]

the communication skills can be improved by the different ways like browsing on internet and searching for general knowledge and there are many more ways, there is any person who knows more skills about that?
thamks..

 

[notme]

Regarding your smoking question--unfortunately, yes it will affect your breathing -- if not immediately, down the road. I'd suggest you try patches or those electronic cigarettes if you can. They work pretty well, as they give the 'feel' of smoking, including the 'smoke' you inhale, but not the lung issues.

Look at the feeding tube as a way to make things easier on you. If you've able to eat, you still can, but you can also use the tube and save your energy for other things.

As Helen said, there are text to speech software programs that will help if your speech is too bad. Wish I could be more help. You're here on the PLS side of the board. I'd suggest you post on the "ALS" side, too--as your symptoms sound more severe than those with PLS have I'm guessing you have ALS not PLS.

Welcome to the forum--you'll find lots of support here.

 

[Tokahfang]

PLS does cause those symptoms, notme, just usually a lot slower. But the ALS folks advice on them is just as good, to be sure.

I find not being understood makes me frustrated, and mysteriously talking with a speech device makes me darkly humorous and 100% more sarcastic... I think it's because it's easier to insert those things in conversation. I also have a lot of gratitude for people who are willing to converse with typing-me for 45 minutes.

 

[notme]

Beky! LTNS! Where ya been? Edited to add: I just figured the original poster would get more input from the ALS side--as lots there are where they are, verses the PLS side of things.

 

[Brother Rock]

You will have more energy, but everyone is different... At least you should be able to keep weight on.

My husband uses a variety of devices to speak... Pen and paper, a whiteboard and marker, his iPhone and iPad with an app called speakit and compact speakers and a dynavox. The dynavox is heavy and better for sitting and holding.

Keep the questions coming... I wish I had known about the voice bank before it was too late. 8((

Jen

Jen, maybe it is not too late. This is only a guess on my part. But maybe you could find some phrases from video or audio tapes of you and record them from that source and use them some how. Just a thought.

Brother Rock