sarah82
New member
- Joined
- Jul 14, 2010
- Messages
- 9
- Reason
- PALS
- Diagnosis
- 04/2008
- Country
- US
- State
- New Mexico
- City
- Albuquerque
I was diagonsed with ALS in 2008. I'm now wheelchair bound but I have good use of my hands but my speech has been getting bad lately. Lately I have been considering going on ventilator when my condition worsens. I know going on a vent is not a popular choice among ALS patients. But I want to live as long as possible. I have been married for five years and I want to spend more years with my husband. My husband is 15 years older than me. I'm 28 and he is 43. We got married in 2005. He has stated that since he is a bit older than me that he will never feel burned out and will always be by my side. I have discussed the vent option with him and he is very open to it.
But I have many worries. I have read that family members can be easily trained in vent/trache care. I know I would need someone around 24/7 and I don't want to burden my husband and family members. My husband makes a good living in sales and marketing and I have been able to bring in some income. I finished my MBA two years prior to my diagnosis and had been working as a finance consultant for a real estate company. I currently do part time consulting work for a car dealership. I feel that a ventilator might allow me to at least have a somewhat stable career. I know that I will need an AAC later on. Then I worry that I will not be able to attain employment due to the ventilator.
The idea of being tethered and dependent on a machine also scares me at times. Sometimes I feel it would be unnatural to be on a ventilator.
My questions to those on vents how do your loved ones deal with the ventilator and how much does it effect their lives and does anyone know if there are any situations in which people have managed to have career while on a vent?
But I have many worries. I have read that family members can be easily trained in vent/trache care. I know I would need someone around 24/7 and I don't want to burden my husband and family members. My husband makes a good living in sales and marketing and I have been able to bring in some income. I finished my MBA two years prior to my diagnosis and had been working as a finance consultant for a real estate company. I currently do part time consulting work for a car dealership. I feel that a ventilator might allow me to at least have a somewhat stable career. I know that I will need an AAC later on. Then I worry that I will not be able to attain employment due to the ventilator.
The idea of being tethered and dependent on a machine also scares me at times. Sometimes I feel it would be unnatural to be on a ventilator.
My questions to those on vents how do your loved ones deal with the ventilator and how much does it effect their lives and does anyone know if there are any situations in which people have managed to have career while on a vent?