I am posting this post from Facebook by an ALSer who so eloquently states EXACTLY why Tracy didn't socialize here in Dallas.
I think I will make a sign, "Hello, I have ALS. This is a neurological disease that affects the nervous system. This includes my speech abilities. I also have an IQ of 135, which is in the upper 5%, graduated college with a 4.0 with honors. Although I speak like I have a clothespin on my tongue, my mind is sharper than a tack and when you say something like I am 4 years old, my mind is racing to plot against you. Since I no longer have dignity of speech, I am impervious to ridicule, and will think nothing of making you look bad to any number of more empathetic individuals other than yourself, who can gauge intelligence from the evil glint in my eyes, and will fall on the floor laughing when I make the fool out of you without you knowing, in a public venue. Ask me for the definition of any of these words that may perplex you. I know what they all mean." (Jus' sayin') There, I feel better.
For those of you who knew Tracy Pre ALS it wasn't as much of a deal except it was so very embarrassing and frustrating to him to not be able to speak or eat around people. But when we had to go to doctors appointments, social situations or clinic, etc. where he was FORCED to answer questions this situation of people treating him like he was senile or brain damaged made him CRAZY!! Most especially it was irritating when nurses and health care people yelled at him or spoke slowly because they should have KNOWN that his mind was all there. Occasionally he would put me in the awkward position of saying something so far over their heads that they had to say WHAT? not because they didn't understand his words but because they couldn't understand HIM.
He also was a fan of giving me THAT look- warning that if I didn't put a stop to it he would actually TELL them what he was thinking. I have found it's a common thing that although many ALSers can't speak well they can SWEAR VERY CLEARLY. Now add to that the Eye Gaze where I had No control or filter! Yikers! Tracy would hit the speak button 10 times before I could pull his eyeballs off the screen! F No, F no, F NO, F No.... As I raced over in horror he would just laugh.
So- the message is- don't assume that because someone's body doesn't work that their mind doesn't work because most of the time that is not the case.
There, I feel better too.
I think I will make a sign, "Hello, I have ALS. This is a neurological disease that affects the nervous system. This includes my speech abilities. I also have an IQ of 135, which is in the upper 5%, graduated college with a 4.0 with honors. Although I speak like I have a clothespin on my tongue, my mind is sharper than a tack and when you say something like I am 4 years old, my mind is racing to plot against you. Since I no longer have dignity of speech, I am impervious to ridicule, and will think nothing of making you look bad to any number of more empathetic individuals other than yourself, who can gauge intelligence from the evil glint in my eyes, and will fall on the floor laughing when I make the fool out of you without you knowing, in a public venue. Ask me for the definition of any of these words that may perplex you. I know what they all mean." (Jus' sayin') There, I feel better.
For those of you who knew Tracy Pre ALS it wasn't as much of a deal except it was so very embarrassing and frustrating to him to not be able to speak or eat around people. But when we had to go to doctors appointments, social situations or clinic, etc. where he was FORCED to answer questions this situation of people treating him like he was senile or brain damaged made him CRAZY!! Most especially it was irritating when nurses and health care people yelled at him or spoke slowly because they should have KNOWN that his mind was all there. Occasionally he would put me in the awkward position of saying something so far over their heads that they had to say WHAT? not because they didn't understand his words but because they couldn't understand HIM.
He also was a fan of giving me THAT look- warning that if I didn't put a stop to it he would actually TELL them what he was thinking. I have found it's a common thing that although many ALSers can't speak well they can SWEAR VERY CLEARLY. Now add to that the Eye Gaze where I had No control or filter! Yikers! Tracy would hit the speak button 10 times before I could pull his eyeballs off the screen! F No, F no, F NO, F No.... As I raced over in horror he would just laugh.
So- the message is- don't assume that because someone's body doesn't work that their mind doesn't work because most of the time that is not the case.
There, I feel better too.
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