Lee Tien
New member
- Joined
- Mar 12, 2025
- Messages
- 1
- Reason
- Lost a loved one
- Diagnosis
- 01/2000
- Country
- US
- State
- CA
- City
- LA
My friend was diagnosed with ALS in 2000...he became quadriplegic by 2002, could no longer speak, completely unable to move except to blink his eyes....
Nevertheless, he lived for another 9 years....his family supported him, was by his side the whole way, mother and brothers and sisters.
I felt I should pass along how, despite his horrible condition, he was still able to communicate to his family and friends and others those nine years.
As I said, the only thing he could do was blink...he was fed by a tube.
So what his family did, was they got a chart of the alphabet, all BIG, FAT, 2 inch (5-6cm) sized high Capitals, plus a comma, and period, and ?sort of like this:
A B C D E F G H I
J K L M N O P Q R
S T U V W X Y Z , . ?
Now, fortunately my friend.could.still hear perfectly fine, so when people spoke to him, he understood without problems.
But communicating was obviously difficult, so here is the system he and his family invented...
His brain was still working fine as well, and he knew what he wanted to say, so this is how they did it....
One of his family would hold up this chart of big letters of the alphabet in front of him, and a pen or pencil as well. A sheet of paper was also often nearby, for the family members to write on.
The family members would take the pen or pencil and point to the letter A, then B, then C, and when my friend wanted to communicate what the first letter of the word he was thinking about, he would blink.
The family members would write that down (later on they got so good at it they often didn't have to, anymore).
Then the family member.would take the pencil
or pen and point again to the letter A, then letter B, then letter C, and so on, until my friend blinked (a long slow.deliberate blink), and that would be the second letter of the word he was thinking of.
They would write that down, and go back again to pointing to A, B,.C, and so on, until he had spelled out the whole word for them in this way.
This would continue on, with him blinking at the period when he had communicated his whole sentence.
After a while of this, his family members got so good at this,.they could guess the words he was thinking of and the entire sentence rather quickly, without having to go through everything completely.
When friends like me called on the phone, one of them would hold the phone up to his ear, and they would go through this process with him and talk to me.
I felt I should pass this along just in case someone doesn't know about it yet...I have also read many cases of people who have had miraculous healings of severe illnesses, though none with ALS, unfortunately.
Now, I don't want anyone to think anyone with ALS should "hang on" under such horrible conditions. However, my friend was only in his 30s when he got ALS, and despite his horrific condition, he wasn't anywhere close to despair for most of the extra 9 years he lived after becoming quadriplegic. His family was also very loving towards him
Nevertheless, he lived for another 9 years....his family supported him, was by his side the whole way, mother and brothers and sisters.
I felt I should pass along how, despite his horrible condition, he was still able to communicate to his family and friends and others those nine years.
As I said, the only thing he could do was blink...he was fed by a tube.
So what his family did, was they got a chart of the alphabet, all BIG, FAT, 2 inch (5-6cm) sized high Capitals, plus a comma, and period, and ?sort of like this:
A B C D E F G H I
J K L M N O P Q R
S T U V W X Y Z , . ?
Now, fortunately my friend.could.still hear perfectly fine, so when people spoke to him, he understood without problems.
But communicating was obviously difficult, so here is the system he and his family invented...
His brain was still working fine as well, and he knew what he wanted to say, so this is how they did it....
One of his family would hold up this chart of big letters of the alphabet in front of him, and a pen or pencil as well. A sheet of paper was also often nearby, for the family members to write on.
The family members would take the pen or pencil and point to the letter A, then B, then C, and when my friend wanted to communicate what the first letter of the word he was thinking about, he would blink.
The family members would write that down (later on they got so good at it they often didn't have to, anymore).
Then the family member.would take the pencil
or pen and point again to the letter A, then letter B, then letter C, and so on, until my friend blinked (a long slow.deliberate blink), and that would be the second letter of the word he was thinking of.They would write that down, and go back again to pointing to A, B,.C, and so on, until he had spelled out the whole word for them in this way.
This would continue on, with him blinking at the period when he had communicated his whole sentence.
After a while of this, his family members got so good at this,.they could guess the words he was thinking of and the entire sentence rather quickly, without having to go through everything completely.
When friends like me called on the phone, one of them would hold the phone up to his ear, and they would go through this process with him and talk to me.
I felt I should pass this along just in case someone doesn't know about it yet...I have also read many cases of people who have had miraculous healings of severe illnesses, though none with ALS, unfortunately.
Now, I don't want anyone to think anyone with ALS should "hang on" under such horrible conditions. However, my friend was only in his 30s when he got ALS, and despite his horrific condition, he wasn't anywhere close to despair for most of the extra 9 years he lived after becoming quadriplegic. His family was also very loving towards him
