Please be patient...

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lizzie11957

Active member
Joined
Nov 7, 2010
Messages
92
Reason
PALS
Diagnosis
10/2010
Country
US
State
Georgia
City
Centerville
I'm having a tough day. This frustration has been building for a long time and I don't know what to do. I have PBP. My speech is pretty much gone. I got the IPAD with prologue2go, but it still takes longer to respond than if I had my natural speech. I've had people ask me a question and then walk away or go on to another topic before I can answer. Today, at the grocery, I saw a person I used to work with. She said hi and I kinda waved and smiled but kept walking. I know she must think me rude, but I didn't know what to do. My husband was with me and asked ms who that was. I waved my hand at him like oh it's not important. He then said, You're always cranky! I could get over just this one incident, but situations like this are happening on a daily basis. I feel like a non person.:-(
 
SOOOOOOOOO FRUSTRATING! Makes you want to cry and scream!

Sorry to hear about your ordeal Lizzie.

Don't you wish you had the ability to make others experience your level of frustration just for one minute?

People need to understand your situation and exercise some empathy - and if they can't - well - to hell with tgem

A number of times I've been on hold for hours only to have the operator hang up on me because she can't be bothered to try and understand me. "AUGHHH! Don't hang up! Don't hang up! "

And most people just assume I am mentally handicapped. My mom picked me up from the dentist the other day, and the hygienist kept going on to my mom about what a brave man I had been. At least I got an Elmo toothbrush and sticker out of it ;)

Lizzie - would you be insulted if I dubbed you a man - only within the meaning of the following poem?

If

If you can keep your head when all about you
Are losing theirs and blaming it on you;
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait and not be tired by waiting,
Or, being lied about, don't deal in lies,
Or, being hated, don't give way to hating,
And yet don't look too good, nor talk too wise;

If you can dream - and not make dreams your master;
If you can think - and not make thoughts your aim;
If you can meet with triumph and disaster
And treat those two imposters just the same;
If you can bear to hear the truth you've spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to broken,
And stoop and build 'em up with wornout tools;

If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
And never breath a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: "Hold on";

If you can talk with crowds and keep your virtue,
Or walk with kings - nor lose the common touch;
If neither foes nor loving friends can hurt you;
If all men count with you, but none too much;
If you can fill the unforgiving minute
With sixty seconds' worth of distance run -
Yours is the Earth and everything that's in it,
And - which is more - you'll be a Man my son!

Rudyard Kipling
 
Thank you! Your dentist story ( Elmo toothbrush ) made me lol and the poem made me cry- in an enlightened way. Thank you for caring about me. Lizzie
 
Hi Lizzie Dear! I hear you.

Love,

Marta
 
Funny thing about the dentist story is that my mom never came to my defence - she just kept eating up the compliments about me. Which only reinforced the hygienist's perception that I was developmentally delayed.

"You're son was SOOOO brave"

"Yes we are very proud of our little boy"


Lizzie, forget the IPAD. What you need is is an air horn: BAAAAAMMMMMMMMM! That will communicate your feeling.
 
Speaking of the dentist, I've been afraid to go. I cancelled my last cleaning for fear of choking. How do you handle that situation. I have excessive saliva. I take meds, but still have problems because I have trouble swallowing.
 
Hi Lizzie,
I thought that I might respond (which I rarely do) to let you know that all of us understand your frustration and feel your pain. I enjoy reading what everyone has to say, and love the compassion they offer. I have bulbar ALS and have had a PEG and trach for 15 months, and on a vent for one month. I haven't been able to speak for three months and when on the vent, I couldn't scream if the house was on fire. I have gotten over insensitive people saying stupid things, thinking that because I can't talk, that I can't hear either. And how many times I have communicated to people that just because I can't talk - I'm not stupid. I only want to offer you and everyone else with ALS love, peace and happiness. I have been prescribed Atropine Sulfate Ophthalmic solution - two drops under the tongue twice a day and the saliva problem goes away. These are eye drops (how they figured it out that it works with controlling saliva) I have tried many other meds but those had side effects I didn't like. The only result of this is dry mouth.
 
Lizzie,
I completely understand how you feel. I also have bulbar ALS and it is devastating to lose your ability to communicate. People should try it for just an hour to see how frustrating it is. I am fortunate to be surrounded by a very loving family who are really patient with me. When I am in a situation like yours at the grocery store I just look at my husband and he steps in for me. I also have an iPhone and iPad with the speak it app but for quick communication I carry a write board, mine is a Boogie board, very cool contraption. I whip that out and write something quick. People are usually so impressed with my board that I have their attention right away. I know that some day I will lose my ability to write so this is only an option until that happens. I also cancelled my dentist appointment because I am concerned about choking. I have a fear of dentist in general and usually have nitrous oxide just for my cleanings. Not sure that is an option anymore. I have that on my list of questions for my next clinic day at the neurologist. This disease is a beast and it steals so much but I think there must be a reason we are all here in this place at this time. Hang in there, I hope God gives you a day of peace that only He can give.
Blessings to you,
Linda
 
Thank you all for responding. These are some great ideas and I'm feeling so much better today. May God bless and keep peace with you. Lizzie
 
Dental visits are a bit tricky.

My regular hygienist is very understanding of my situation and the risks of aspirating.

We have suction going all and take frequent breaks. It is still a lot of work and requires a lot of concentration on my part.
 
My mom also has PBP, she can no longer drive, but when she was still driving, she went to the gas station. It was a gas station she frequented often because one of the few that had full service. The man came up to the window and she wrote on her board what she wanted, he looked at her and started doing sign language. She laughed and wrote down I can hear, I just can't talk. You all are right in that this disease is awful. Someone was talking about singing and my mom broke down crying, she wrote she would love to be able to sing. That is something she enjoyed so much. Living this with her as shown me that you should not take these things for granted. God Bless to you all, my prayers are with you all.
 
What is a boogie board? My husband is very hard to understand now, and it is so frustrating. He is bulbar too.
 
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