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Active member
Oct 8, 2007
Learn about ALS
Beverly Hills
I read the following on the ALS network Web site:

"Unlike other diseases, living or dying is a choice. In other words, ALS itself is not fatal when a ventilator is used successfully and complications are avoided. Methods of mechanical ventilation, used to relieve symptoms and prolong survival, include nasal (noninvasive) ventilation or tracheostomy (invasive) ventilation."

Why, then, do many (or is it most?) ALS patients not avail themselves of ventilators and thus succumb to the disease, often within a short time? Is it because of expense? Because the progression of their disease does not lend itself to the use of a ventilator? Because some simply wish to let the disease take its course rather than prolonging their suffering?

Thanks for any information anyone might have about this.

Hi Jeff- maybe quadbliss will weigh in with his experiences. He has a lot of good advice on this subject.
I've heard that a lot of Doctors actively discourage people from going on vents. I'm not sure if it is liability issues on their part or just plain ignorance. After what I've seen here I'm leaning towards the latter. Most have no experience with them.
Hi Jeff,

Let me start by saying I completely agree with the initial premise. LIVING with ALS is a choice. I still remember the elation I felt the day I realized I did not have to die.

In my experience, the primary reason people give in to this disease is the speed of their progression. People with slower progression have time to adapt to each stage before the next one hits. They are able to retain a sense of normalcy in their lives. People with faster progression are hit rapid-fire with one loss after another. They never even get their head above water. For these people, life can be a downward spiral. They can't keep their head up long enough to see light at the end of the tunnel.

I am hopefully many years away from this decision but at this point my intention is to vent. I realize that may change between now and then and also depends on my situation at the time. My biggest concern is the burden it will place on my family. In all honesty that is my largest concern in general. I've got it, can't get rid of it so how do I make it easiest on the family. Discussions such as these are priceless for that purpose.

I have to give my complete respect to Mike not only for his outlook but also for the content and behavior on these forums. The practical experience and no nonsense attitudes that most of the "elder" forum members, such as Mike and Brentt, are invaluable. ALS clinics are a good thing but nothing can surpass the knowledge gained through personal experience and I would just like to say thank you for sharing. I consider you two the Ents of the board, I'm sure there are others I have yet to meet. For an explanation and a giggle check out:
i think that quality of life is more important than quantity. 'Quality' is an individual matter and everyone will vary. I am lucky not to have reached the stage of needing invasive ventilation, but although I will have no problems accepting non-invasive ventilation , I will not opt for invasive. Becoming 'locked in' would not be a quality existence in my book and i would prefer to let the disease take it's course when i reach that stage. We are all different and i realise that for many , venting is a way forward, but it is not for me.

I understand what you are saying. It has been like that for my husband and I, we no sooner adjust to one change and another happens quickly.

I believe that doctors should give their patients accurate information about ventilation as an option to extend life without judgments about whether it is a good or bad choice. This leaves the decision in the person's hands to contemplate and to talk over with their loved ones. There is a very negative attitude about mechanical ventilation exhibited by many medical personnel. In my family's experience three different doctors spoke negatively about this. One stated, "There is the option of ventilation when you experience respiratory failure, but you wouldn't want to do that." I didn't question this attitude, as I imagined my dad attached to a large machine unable to move from the bed whereas this is really not what it looks like at all. Another said, "Ventilation is extremely rare in ALS, as a matter of fact none of my patients have ever chosen mechanical ventilation. You would have to be in a specialized nursing home and only be able to move between a chair and a bed" This is not completely accurate information. There are people who live at home and have more mobility than that. While my dad's final choice was not to be vented, I made sure he knew that it was an option should he wish to do it.
You are right, Holly. People need to know their options and understand fully. If the medical community cannot provide that information we will have to do it here for each other. Cindy
So far, my DH has said he does not want a vent...he is using a bi-pap. I think age has in some ways a lot to do with the choices. Older people feel that they have lived a good life and don't need to remain around in a condition that locks them into an immovable body. Younger people often have children and young spouses to think about.
My father in law was diagnosed with ALS in May 2007. In the last year he has gone from walking with a walker to having no leg support at all and his arms are so weak that he can barely lift a cup of coffee to drink it. I think hte quality of life is the question. If ALS attacked his breathing first then I would think he would go with the ventilator, but he has said he definately doesn't want to live as a vegtable. If breathing is the only thing you can do then that makes for long depressing days. I wish we could keep him around for a lot of years to come but we aslo respect his choice to not want to be a vegtable and live. This is a very unfair disease and I think it should be 100% up to the PALS to determine what medical support he wishes to have. If it were me, I would not want to prolong agony, frustration and every other emotion that comes from not being able to even move your own arm.
I pray everyday for a cure or at least some breakthrough for ALS. -
There's a new procedure in use in Cleveland and Johns Hopkins and (I think) Vancouver, that uses electric implants in the diaphragm to help you breathe normally for a while longer.

Wow. I hate to comment on this. I can only imagine what life in that condition must be like for the PAL and the team of caregivers. But I do feel like I want to make a point. We are at a different time in medical history right now. Maybe even just a few years ago I wouldn't have recommended venting to someone who wasn't committed to it, but now...

I don't want to encourage false hope, but everyone with ALS today should at least consider a vent.

There are 2 human trials beginning next year using stem cells. One is from Neuralstem and the other is an even more robust procedure being pioneered by Brainstorm, an Israeli company. Either of the stem cell trials could result in extreme expedition of the FDA approval process. There are also a couple of drug trials that could finish up and apply for market approval in about 20 months.

If I were a betting man...I'd vent.

Plus, I have a 5-year-old girl and a 2-year-old boy. For me, anything would be worth the shot at seeing them grow up.
I wonder if ALS is an exception to the rule when it comes to the ignorance of the medical community.
What I mean to say is, when people have other nasty lung complications (other then ALS) the home vents may just be impractical for many reasons. Can you imagine trying to combat infections, contamination and endless sterilization of self and the medical equipment for an ordinary spouse and family members?
With ALS it's less complex. There is not as much to manage, unless the PALS get an infectiouse lung complication. However if the sterilization techniques are kept in force the patient can sustain life long term.
My pulmonologist dropped me the day I went into the E.R. for my tracheostomy. What an (#%&)#). He just left my whole family with the option of hospice.
Also cost is an issue. Age surely is an issue. Kids,yup I have a 5 year old that I must consider.
I bet it is because they don't know enough about the disease. They compare it to what they know about other conditions. My GP's assistant didn't even know what fasiculations were. Of course neither did I until my neuro showed me, but then I don't work in a doctors office.
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