Texans 2014
New member
- Joined
- Sep 2, 2014
- Messages
- 9
- Reason
- CALS
- Diagnosis
- 09/2011
- Country
- US
- State
- TX
- City
- ARLINGTON
My PALS was diagnosed Sept 2011. Prob had it a year earlier. Started in his hands and was slow moving until about 2 years ago and it went crazy.
He is paralyzed except for his neck and a little shoulder which still allows him to drive his power chair. He has always had a really good outlook and smiles a lot. We watch tons of TV. He has a TOBI Eye gaze which has been wonderful for communicating his needs and for conservation.
We are high school sweethearts and he is the absolute love of my life. We have 3 adult children and 1 8 month old grandchild. Our only son has stepped up and he and I take care of my husband.
My PALS has had a Peg for about 3 years and has had a vent for about 2 years now. He gained at least 20 pounds back and has kept most of it. He has done really well on the vent. He has a power chair and we go on walks etc. Much better than the Bi-Pap mask which he was wearing 24 hours a day.
Lately, though, he doesn't seem to be as happy as he was before. He hasn't slept very well in 2 years which leaves my son and I EXTREMELY sleep deprived. He can't get comfortable and is very, very needy for comfort things. The same things over and over. Of course, we tend to all of his needs but it has become exhausting. He doesn't seem to be able to go more than 10 - 15 minutes without needing something from never-ending suctioning, breathing treatments, cough assist, legs and hands adjusting to wiping eyes and mouth to rubbing feet, scratching his head, leaning him forward and back, etc.....
We love him and will do anything and everything he ask to keep him comfortable. He seems down and I wonder about his quality of life.
All this leads to my embarrassing question. How will his life end? Having a vent and feeding tube will keep him from dying of malnourishment and breathing difficulties. I am afraid that he will be 100% paralyzed and unable to communicate and still being forced to continue to live because he chose the vent and FT. I am so afraid that he will live for a long time this way and it be torture to him. Any comments are greatly appreciated. Thank you
He is paralyzed except for his neck and a little shoulder which still allows him to drive his power chair. He has always had a really good outlook and smiles a lot. We watch tons of TV. He has a TOBI Eye gaze which has been wonderful for communicating his needs and for conservation.
We are high school sweethearts and he is the absolute love of my life. We have 3 adult children and 1 8 month old grandchild. Our only son has stepped up and he and I take care of my husband.
My PALS has had a Peg for about 3 years and has had a vent for about 2 years now. He gained at least 20 pounds back and has kept most of it. He has done really well on the vent. He has a power chair and we go on walks etc. Much better than the Bi-Pap mask which he was wearing 24 hours a day.
Lately, though, he doesn't seem to be as happy as he was before. He hasn't slept very well in 2 years which leaves my son and I EXTREMELY sleep deprived. He can't get comfortable and is very, very needy for comfort things. The same things over and over. Of course, we tend to all of his needs but it has become exhausting. He doesn't seem to be able to go more than 10 - 15 minutes without needing something from never-ending suctioning, breathing treatments, cough assist, legs and hands adjusting to wiping eyes and mouth to rubbing feet, scratching his head, leaning him forward and back, etc.....
We love him and will do anything and everything he ask to keep him comfortable. He seems down and I wonder about his quality of life.
All this leads to my embarrassing question. How will his life end? Having a vent and feeding tube will keep him from dying of malnourishment and breathing difficulties. I am afraid that he will be 100% paralyzed and unable to communicate and still being forced to continue to live because he chose the vent and FT. I am so afraid that he will live for a long time this way and it be torture to him. Any comments are greatly appreciated. Thank you
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