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azwxman

Distinguished member
Joined
Jun 15, 2014
Messages
147
Reason
PALS
Diagnosis
06/2014
Country
US
State
az
City
tucson
So weak today...I was trying to just hold a tape measure up for my wife and my arms gave out after only seconds. Even with my walker I'm constantly at risk of giving out. Starting last night, the back half of my tongue just felt 'foreign'...like I no longer know how it's supposed to work. Had issues swallowing saliva...not choking, but, again, as if I no longer have enough control of throat and tongue to accomplish what I've been doing for 59 years.

I'm going Monday to pulmonary to get a BiPAP. In spite of warnings from ya'll about getting used to it, I'm looking forward to more normal breathing. I'm within months of taking delivery of a PWC and my wife is beginning to push for a PEG.

Wow...the shiite is coming on fast these days. This sucks a$s!

That is all...
 
Wx, my heart feels heavy for you. I hope the BiPAP and PWC are on time and on target. Keep us posted. --Mike
 
Who warned you about bipap? Bipap will as you say help you to breathe better. It also seems to slow down loss of breathing function in some. You don't need it more because you use it other than you like feeling better. We end up needing it more because we progress unfortunately.

I am sorry about everything seeming to hit at once. If people are telling you it is time for a PEG don't wait. My sister did and her only regret about having one now is she did not do it when it was first recommened

I am sorry everything seems to be hitting at once. It does often seem that way. You are going along kind of ok and then all of a sudden it seems like everything is going at once.

Good luck on Monday.
 
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Nikki: when I say 'warned' I just mean that other BiPAP users say that it may cause us to feel claustrophobic, or we simply need to get used to the machine doing the work.

Thanks for the good words...
 
Oh I totally misunderstood. So sorry! Yes of course you are right it takes some getting used to for most but it will be worth it
 
Azwxman, I am so new to all of this so I have absolutely no wisdom and even less insight. I used to look for great days. Now I'm overjoyed with great minutes and moments. I'm sure it seems like a cliche but maybe this will help.

I can say for certain, though, that I read your post and I am sending you all the love and positive energy I possible can.

Cee.
 
Cee: I'm still fairly new as well. Most days were not terrible, but things can change rapidly at times.
 
Azwxman, So true. I'm sorry things are shifting so rapidly for you. Sending you all my very best.
 
I wonder if the issue with my tongue is because ive been putting a lot of effort into banking my voice in the past week. Ive recorded nearly 1100 phrases and have 500 to go. Maybe my tongue is just tired?
 
Azwxman,

Could very well be. My voice is almost gone. Slurring began back in November and as it progressed, I noticed that the more I talked during the day the worse my speech was by the evening. However on a positive note, the fact that you banked your speech will mean the world to those around you. My wife tells me often she misses my voice.

vince
 
azwxman, will be thinking of you and sending out good vibes your way. i can relate to the surge of downward decline coming on out of nowhere. it really does suk! keep posting, much love chally
 
Azwxman, can I offer hugs? I so wish they could help... Good move on the chair and bipap. Hoping they will help with the energy.
 
> I'm within months of taking delivery of a PWC

good decision! you hang in there ....

.
 

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Azwxman- the local ALSA likely would loan you a pwc if that would help.
Bipap took about a week to adjust to, but boy does it help!
 
azgirl: sent an email to them yesterday, thanks!

Everyone else: thanks so much for the words of support! The changes this ***** of a disease wreaks on us are just so hard to take. Encouragement is greatly needed and accepted.

All my best to each of you.

Mark
 
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