To Vent or Not to Vent
 

I recently went to clinic at UofM and Dr. Feldman told me that in the U.S, only 10% of ALS patients go on a vent, while in Europe, 80% of ALS patients go on a vent. Tell me why the discrepency? Why do people in Europe value their life more?

I don't know why for sure ..but wonder if Europe has a more supportive healthcare system for PALS...Lisa

I can't speak for other European countries but here in the UK only a tiny fraction of PALS manage to get on a vent(far less than 10%) and those that do have to fight to get the trache,vent and appropriate home care.
In some countries like Denmark,I know a lot of PALS are on a vent but I can't see it being 80% across Europe.

Why I vented
 

My children were around 3&4yo the year I became vent dependent. The past 13+yrs have not been like a stroll in the park but the good times by far out weigh the bad. I think my kids appreciate having me around all these years despite the help they've given me. I've been here to love them, advise them, watch them in sports, instruct them, teach them, listen to them, joke with them and help them with anything I possibly can. I'm not boasting but I feel comfortable saying I think they're better people having known me and I'm positive that I'm a better person having known them.

I agree very much with Dave..
Although a PALS decision to vent or not to vent is a personal one I do feel there are very few PALS that regret this decision..
A vent is scary at first and intimidating ,,,geez I remember hearing people talk about changing circuits.. and thinking to myself now do I have to become an electrician?..I'm not intelligent enough for this...well a circuit it turns out is just a plastic hose ..go figure...there are alll these complex terms that in reality are really simple little things..that have intimidating names..
When Gary was first vented..he was given the option to switch from the vent to a bipap and attach it to his trache ...( which is really a vent that can not stack air)..he said no he wanted a superior machine...he was also given the option to come off the vent for hours a day..he does come off for showers..but honestly I feel more comfortable when the vent is on him...no more sleeping with my hand on his stomach worrying he will stop breathing....and in his condition I couldn't leave him alone anyway..infact off the vent I have to watch him closer..
He had numerous complications due to the disease process and paralysis..and it stinks having to go in and out of the hospital frequently..but I'll say this when he is at home..life is sure alot easier than when he is in the hospital..at home I can do whatever I wish and my monitors will let me know what's going on...I don't worry as much either that something is going to go wrong that I can't handle ...what was at first intimidating I trust myself with almost as much as any other person..as I know his normals better than anyone..
As far as dealing with it himself..he gets on the internet mainly for sports and news , listens to his music, watches movies with the kids, talks to the kids, but really does not spend alot of time anymore thinking about the disease..he has grown accustom to being paralyzed...and does not fear the things he used too...he looks at himself more as a quadraplegic...and looks at the main dangers as secondary infections and complications due to that...which most of those are preventable and treatable..it changed the way he felt from being helpless to empowered over his care and his disease..
He is not a slave to the vent..it is a slave to him..he can use it as much or as little as he wants..disconnect if he feels he has endured too much...but for him life is much better right now than it is bad...our family does have to plan ahead make very careful schedules..have back up plans..but we did as well before the vent...Lisa

dpathome,

Similar Dave's history, my son just turned four last month. I intend to go on a vent so I can remain in my son's life as long as I can. I pray I remain in Ethan's life for 13+ years like Dave.

My now ex-wife is a registered nurse who has an addiction for narcotics. She recently was caught stealing narcotics from her once Home Health clients. Due to my diagnoses people i.e.; her old employer (s) and clients feel sorry for her and have chosen not to press charges. There's so much more to this story but I think you can get the gist of why I must remain in my son's life.

Jeff

Geia hara
I agree with Dave and Jeff !
Fotios

Dave and Jeff have raised the best points for venting. I would do it for my family. Right now I am getting by on bi--pap. During the day I can take breathing breaks as often as necessary. Or I can hook it up to my power chair and go anywhere. As long as I can get by doing this, I will.

I ask my wife if it's worth it
 

I very rarely let myself get down but last time I did I ask Deb if my being here is worth all the hassle. She puts me in my power chair M-F around 7am, gives me a tube feeding then heads for work. She comes home for lunch, feeds me and grabs a bite for herself. Gets home around 3:30-4pm and we make it to bed around 10-11p. I ask Deb if it's worth it. She says of course it is because of all the same reasons I listed for the kids. Listening, helping talking etc... Plus I pay all the bills online. She hates writing checks and paying bills. She says she'd be lost without me. In bed at night she always touches my arm or puts my arm around her. Since I can't speak, because of my cuffed trache, I squeeze her three times ever so lightly. Three little squeezes means "I love you" and she squeezes my arm back three times. I can't die yet, my income pays the mortgage and we have 13yrs left on a 15yr mortgage! LoL

Dave,

You are without question an inspiration for all PALS. I was going to send you a private message to inquire how you cope with your limitations. Now that you have shared your home life with us I would like to ask you several questions out where other PALS & CALS can also benefit from your past experiences.

1.) What has been your greatest challenge raising your children?
a.) I see my son being thrown up in the air or hugged by my friends and I think to myself, that should be me. How have you over come this scenario?

2.) How do you communicate with your wife and children?
a.) When you are out of your home how do you communicate?

3.) I fear being an embarrassment to my son once he enters Junior High School & H.S. where there are more children and parents who do not know about my illness. Perhaps this fear is my own shallow immaturity showing through. However, a valid concern nevertheless. Did you experience this hurdle?

4.) When Deb leaves for work do you have an emergency protocol if you require immediate help? Life line or similar?
a.) What happens if your vent were to fail while you are alone?

I admire your choice to remain with your family and in their lives. I hope you do not find my questions to personal. I haven't seen many PALS post their home life challenges. I would like to thank you for expressing your feelings.

Sincerely,

Jeff