Pity Party coming on!

Status
Not open for further replies.

Santa joe

Senior member
Joined
Oct 14, 2013
Messages
637
Reason
Lost a loved one
Diagnosis
02/2012
Country
US
State
South Carolina
City
Goose Creek
The speech therapist and Dynavox representative came here yesterday. What a great devise. Of course my Pals was PO'd before they left. He was just demonstrating how it works and Joe was trying to figure it out. Not really a training session, that will come later when his arrives. I can no longer make out anything he says nor figure out what he wants. I have flash cards but he gets aggravated with them. I don't even know if he will use it. Like so many Pals out there, he might do something today but refuse to do the same thing tomorrow. It has an alarm on the screen. GREAT, just what I need. If he starts with the alarm, bell and vent machine going off, I'm going to be in a world of poop. Maybe they won't put the straps on the white jacket while I'm in in the Nut House. That way I can still be on this thread......

Tillie - I'm here with you girl. Tired, tired, tired. You know you're in trouble when the first thing you think about is getting sleep.
 

Rhonda J

Member
Joined
Jan 24, 2014
Messages
20
Reason
CALS
Diagnosis
06/2009
Country
US
State
Oh
City
Fairborn
My husband has one of those talking boxes.. his speech was getting bad and to the point I could not understand him and he would not try to use the box.. you have to listen too hard to understand what the PALS is saying and it got frustrating to the point that I refused to talk to him unless he used it.. listening was exhausting. He can use his hands and still type.. one finger at a time but he can...we communicate on Yahoo Messenger or Facebook...
 

barneyswife

Distinguished member
Joined
Jan 10, 2014
Messages
224
Reason
CALS
Diagnosis
08/2013
Country
CA
State
b.c.
City
magna bay
Barney has a Lite Writer, our son typed in a bunch of common phrases and we all had a good laugh at some of the things he quoted from his dad when he used it....... those operative words again, "when he used it".
I have always been extremely patient and have been complimented throughout my life for it, but ALS is testing, testing, testing.
I am with you Tillie I really hope my strait jacket has arms but I have to wonder....it would probably be okay for a couple of weeks as long as they medicate me heavily and just let me sleep.
Hugs
Linda
 

rosec

Distinguished member
Joined
Aug 2, 2012
Messages
330
Reason
Lost a loved one
Diagnosis
11/2009
Country
US
State
CA
City
Costa Mesa
Ah the joys of spelling...
PALS: thee
CALS: 'T'? 'C'? 'D'? 'G'? 'Z'? 'E'? '3'?
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,322
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
@rosec so hard isn't it! so frustrating for my PALS too and he gets exhausted trying to talk too long.

you forgot it could also be P or V ...

sleep, I need sleep
 

barneyswife

Distinguished member
Joined
Jan 10, 2014
Messages
224
Reason
CALS
Diagnosis
08/2013
Country
CA
State
b.c.
City
magna bay
I agree Tillie, I am so flipping tired!
I have some kind of rash on my back and front, soaked in baking soda and water then put cream wherever I could reach. Did not help.
I think it is just stress?
Hugs
Linda
 

Ronnie& sissy

Active member
Joined
Jan 12, 2014
Messages
62
Reason
CALS
Diagnosis
09/2012
Country
US
State
WV
City
Cameron
Oh my goodness ladies, I have to share this, speaking of not speaking; the other day we didn't have a afternoon shift coming so I stopped up by around two to lay him down for a nap, and went back to work. ( thankfully office is only 1mile away). Anyway, had to run to the store after work so I got home, and went in to tell him it was me, and I seen the shock look on his face but didn't really think about it.... So then the pointing starts, and the game begins.
Keep in mind, he does good usually but with the mask on, it's virtual shrades. So, I get out I, then he shakes his upper body so I say " you cold," no " you got to pee" no, got to #2' no, by that time I'm chuckling a little, and he's getting a little tickled. Then finally he points to me, right on the color bone (the way he used to when we were playing around, to tickle me) "I " then he throws his hands in the air and got wide eyed, " scared" points to him "me" .......... Then ladies and gentlemen, it was all over, he was saying "I scared the sh-- out of him," and we got to laughing and yes, I peed a little, thankfully he waited till I got the jug, and this lasted for about ten min. Bless his heart when he laughs now, not very much sound comes out, so his face gets red, and checks puff up, and eyes are all squinty, and that makes it even funnier...
Really thankful for those moments.. Not only to laugh with him again, but to see a glimps of what we used to be like!
And it also gives me ammo for not so good days, I can just go over and gesture what he did, and hopefully laugh all over again! Quoting the words of a very wise lady
" I would rather laugh than cry"... ;)
P.s our app. For the speech evaluation is coming next week, looking into banking his words. Any opinions?
 

Ronnie& sissy

Active member
Joined
Jan 12, 2014
Messages
62
Reason
CALS
Diagnosis
09/2012
Country
US
State
WV
City
Cameron
Linda, I had a lot of problems with sores on hubbies nose from face mask at night, then I noticed the fabric wraps they had for his nasal pillows to stop irritation on his cheeks, and it reminded me of the micro cloths I have for cleaning glasses, and I had some large ones for house cleaning. I searched them out washed them, put his face mask down on one, traced the out line cut it out and cut the center out 1 ½ inch from the edge. This made a gasket that I put on under the mask, and voila, no irritation and actually decreases the leaks. I med a few more with the remaining clothes and was them in the laundry. I do have to trim off the occasional frayed thread but they work great. Just call me McGyver.

Paulette
Paulette, they have those at c pap.com. They work pretty good! Also, when my pals wakes up I will get the name of the mask he uses, we went through every single mask on the market, and nothing worked, then we finally had someone suggest the one we use now, instead of going overtop your nose like the most do, it has nose pillows that go up to your nose holes. Makes for a better seal around the mouth, and don't have to worry bout the big sore one his nose. Like I said here in just a little while I will get the name of it, and post that, maybe it can help.
 

zoohouse

Senior member
Joined
Jan 14, 2013
Messages
958
Reason
CALS
Diagnosis
07/2012
Country
CA
State
B.C.
City
Salmon Arm
Paulette, they have those at c pap.com. They work pretty good! Also, when my pals wakes up I will get the name of the mask he uses, we went through every single mask on the market, and nothing worked, then we finally had someone suggest the one we use now, instead of going overtop your nose like the most do, it has nose pillows that go up to your nose holes. Makes for a better seal around the mouth, and don't have to worry bout the big sore one his nose. Like I said here in just a little while I will get the name of it, and post that, maybe it can help.

They are Remzzz, and I have ordered some. We tried the nose/mouth mask but my husband gets sores in his nose then. We tried 12 or more masks and the one we use now works well as long as he has his home made gasket on. The thing that I like about it is that I can throw the two that I alternate in the wash and they continue to work great. Saves money and I am all up for that.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,322
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
OMG I finally found those glasses!

Of course I wasn't looking for them when I did find them, and of course they were hiding in plain sight all this time.

sheesh!
 

barneyswife

Distinguished member
Joined
Jan 10, 2014
Messages
224
Reason
CALS
Diagnosis
08/2013
Country
CA
State
b.c.
City
magna bay
Two days of a sweet kind of normal. Barney has been really chatty with his board. It is almost a new excitement for us. We were both even able to laugh at his spelling. He felt the ashes needed to be cleaned out of the stove. It started out as aces, so I guessed acres, NOOOO, he tried again with aches so I asked him if he had a toothache. (he wears dentures) and he gave me this really weird look like he thought I was loosing my mind. He finally wrote down STOVE! Of course the stove had an ache somewhere! Once I realized he meant ashes we had a great laugh and it seemed to continue this way. Never would have imagined how great those laughs meant to both of us.
Hugs
Linda
 

Santa joe

Senior member
Joined
Oct 14, 2013
Messages
637
Reason
Lost a loved one
Diagnosis
02/2012
Country
US
State
South Carolina
City
Goose Creek
Cherish those laughs ladies.....I am so determined to NOT let ALS overshadow my special memories. I can talk the talk, hopefully I can walk the walk. I am a strong person but ALS has brought me to my knees at times. Like so many of my CALS, tired all the time. I wish I could sleep for a week. Oh well, hanging in here.

Debbie
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,322
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Definitely laugh all you can on the days you can.

It's the same here, we are all like clones of each other I think.

Somehow we get back up off our knees and do it all again. Love you girls!
 

zoohouse

Senior member
Joined
Jan 14, 2013
Messages
958
Reason
CALS
Diagnosis
07/2012
Country
CA
State
B.C.
City
Salmon Arm
It is like working with clay, sometimes you have to smash down a vase you are making, to make an even better one, and I think that that is what God is doing when he brings us to our knees. He will build us up to something better and stronger, but that doesn't mean it doesn't hurt. Hang in there guys, Live, Love, Laugh.
Paulette
 

barneyswife

Distinguished member
Joined
Jan 10, 2014
Messages
224
Reason
CALS
Diagnosis
08/2013
Country
CA
State
b.c.
City
magna bay
Have to wonder what are we getting stronger for?
Hugs
Linda
 
Status
Not open for further replies.
Top