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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?
 
Sarah,
My Mom has been on a vent since March of last year. She does very well. In the beginning it was a little overwhelming for us but in time it got to be second nature. We have a great respiratory therapist who trained us. Mom says she is happy that she did it and would recommend it. She has a power wheelchair and we go all over with her vent. It fits on the back of her chair. We went to the movies for the first time th other day. If you need any more info let me know. It was the best thing she did. You should do it before you need it. You may not have to be on it all the time in the beginning...there are choices.
 
My wife has been on a vent for over 2 years now and we believe it was a good decision. Overwhelming at the beginning but this ends quickly.
 
You sound like you are a good candidate for a vent. You have the right attitude and support of your husband.
I have been on one for over 2 years now and can say that it was a good decision. It took about a month for my wife to overcome her fear of it, now it is routine. It does not take a professional medical person to look after you, anyone can be easily trained.

You will always be able to use a computer so working should not be a problem. The only thing that may influence working is your energy level. I am finding I don't have the energy or the ability to cope with stress. ALS does affect your nerves first, then muscles, then emotions. With your nerves being shot I found I could not cope with things and situations that never bothered me before. Be aware this might happen to you.
Otherwise, a vent is an excellent idea and nothing to fear.

Please go to my website and read about my experiences with a trache and vent.

My Life With ALS

Goto the Content Index and you will find a lot of information that I hope can help you make the right decision.
 
hello everyone It seem every time I have a question someone else ask it . It is about time for me to choose a trache ,and iam afraid,now I admitted out loud. I am able . to use my arms and legs but my endurance and breath is alful. I am very blessed my daughter is very supportive and she is a rn and my husband and the rest of my family want me to do go for trach and vent . I am also afraid that the hospital will try to keep in the hospitl.
I am or was a rn and we had several pts that was on our unit for many years until they died. I am worried about being a burden ,but my family that is not a problem that I had care for them they said they would rather take care of me than lose me . my daughter did say if I didn't want she would support me in that decision also ,even tho she doesn't agree I guess I have answer my self I will go for it,but I am still scared and normally I am not
I pray and know the LOrd is in charge.
 
Don't be scared, it is really not a problem at all. Just make sure you have everything in place before you go into the hospital and get your trache.
Here is an explaination of what preparation you need to do prior to getting your trache.
Preparing
 
I don't think I could put the vent burden on my family. Especially if the time comes to pull the plug...just sayin...
 
If you love someone it is not a burden, it is a privilege.

I have thought a lot about this and the reason I decided to get a trache is because if it was my wife who had ALS I would make her do everything she could to stay alive. I could not imagine life without her so when she told me she wanted me to live I understood.

This is not for everyone and I make no judgement. But it is not at all what the medical profession usually tells you. With adaptive devices it is easy to look after someone. If the PALS fights this then life for the CALS can be horrible but it does not have to be that way.

I know things are a bit different where I live than most places in the US, but you are not in prison and they can't forbid you from getting a trache and going home after. I could say a lot more but will quit unless someone asks me for more.

Phil, I understand and respect your decision, as I have said - everyones situation is different and there are no right or wrong decisions.
 
thank-you for your support I went to your site and it was very helpful thank-you again and I will show my daughter your site
 
I worry a lot about loved ones becoming overwhelmed in a vent situation. I have some of the same worries as you flower. My loved ones have also said they will respect my decision if i decide not to go on a vent. I checked out your site joelc it is very good and has a lot of info.
 
all i can add is that you are lucky to have loved ones around you who make the choice possible. If they want you to live cos they love you and you want to live cos you love them as well as life, then go for it and thank Heaven for having the choice;
Love is what makes the difference
 
My loved ones have been a motivating factor in me considering going on a vent but still I fear that there might be a negative outcome if I go on the vent and they become overwhelmed.
 
I wished my brother had gone on the vent. He had made the decision he would but once he moved out to Arkansas with his new wife
he seemed to change his mind. I think that their family was too accepting of death (highly religous) and influenced his decision. If he were
here with me I would done everything I could have done to convince him to use the vent and live on. I think his new wife's family and the
doctors there gave him too much of a negative view.
I think any family member would be willing to do what it takes to keep loved ones around. Not as an obligation but because they want to.
 
I had a trache done on December 2nd. My breathing and lungs worsened and I elected to go on the trache. I had a feeding tube installed as well. The first few days were scary. I was released a week later. So far since I'm not a vent my husband and relatives have adjusted easier. I miss talking and eating.
 
Were you talking and eating before getting a trache? If you were there is no reason you can't do both after a trache.
 
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