Non Terminal with a Vent

[FightingAttorney10]

Pals need to wake up an realize that with appropriate care one can live decades on a vent. ALS is not more terminal that a high SCI, and less terminal than terminal cancer. I am tired of these BS neuros and their medical discrimination. We are organizing demonstrations on 1/6/2014 and anyone who wants information visit ALSTDI. I may get banned from this site but I do NOT care. I am tired of this terminal disease BS. If you have the money and want to live venting will give you decades with appropriate care and an avoidance of complications.

 

[rosec]

I agree with you on that. I know someone who had ALS and was vented, died of heart failure after a few years. So in her case it was heart disease that was the terminal illness.
She was in bed pretty much 24/7 after she was vented, had a nurse by her side 24/7. Her daughter who was in her 20's moved back to the parents' home as a backup, just in case.
So if you have money to hire professional help, and family members/friends who will be at your side, by all means, go for it.

 

[Diane H]

I am all for changing the gloom and doom spouting of ignorant doctors who only know the out dated statistic of 3-5 years. And the doctors who discourage the use of a vent with tales of 24/7 nursing care and a dreadful quality of life need to spend some time with someone like me!

I agree that ALS isn't terminal if all available medical technology is used, but I can't go so far as to compare it to a high spinal cord injury. They have other additional problems to deal with but, although there is evidence that their level of cord damage can creep higher over time, they do not progress to level of cranial nerve involvement seen in ALS. While I believe that all out care can give years of good quality of life as I am experiencing, the majority of ALS patients reach a point where turning off the vent is their choice.

I need to correct the common notion about the need for 24/7 nurses and the resultant impossibly high cost of electing to live with ALS. If you have family and friends willing to provide care, you do not need a nurse (RN, LPN, or even a CNA) for so much as a minute a week! If family and friends can't handle it all, you can fill in the gaps by hiring hire anyone you want, train them your self, and pay a decent
wage that will cost far less than any professional nurse, far less than any agency staffing -- and your assistant will probably make as much as he or she would working for an agency. Your self trained assistant will be able to do suctioning and other so called skilled care that many agency nurses are not trained or legally allowed to do. Finding a good assistant isn't easy, you will probably fire many, but when you find a good one he or she can become a friend and even family.

 

[Clearwater AL]

My post may get deleted but I'll say it for a few minutes. It galls me to no end to read posts by those with means and wealth ranting about something they can afford without one ounce of consideration to those with little means and no wealth. Everyday they wish and dream of having a financial break to ease dealing with the horrible disease of ALS. Many may not have family living close by, some may not have family. Everyday I think of those who have little means and no insurance. Why do I think about them? Because my wife and I are fortunate. Yes, there are fortunate people who think of others. Take a moment and "get over yourself" and think about the people I've mentioned above before you post something many others can't afford and can only wish for. There... I feel better.

 

[FightingAttorney10]

Clearwater Al, it is unfortunate by the world revolves around money, and I feel there is hatred towards Pals who have the means to afford venting and nursing care so they can live a very long time with the disease. In my opinion, it is a two way street.

 

[Barbie]

To vent or not to vent is a choice each pals makes. But being vented does not guarantee decades of life, nor quality of life. This forum had a very pro-vent member a few years back ( JoelC) and he lived 8 years if I remember correctly. he had a dedicated wife and full time care, a strong will to live and was beloved by everyone on this forum. 24/7/365 care from family and friends? for decades? And money is an issue for most people.

FA, I have never seen "hatred" towards a pals who has the means to vent(or the inclination) or hire nursing care.

I will also say, I am glad my husband doesn't want one, and I would never want one either. but that is just my position.

 

[Katie C]

Fighting Attorney.. in a "perfect world" you may be correct. Who knows... since we don't live in a perfect world. Are there cognitive issues involved? How quickly is the disease progressing. What does the individual Pals believe about quality of life. As Barbie said.. it's an individual decision for each person. For one, vent and peg may be absolutely a viable choice. For another, not. For a number of reasons, for my husband it was not a choice. Finances played ZERO roll. Our neuro was totally supportive of either choice. And I agree with Barbie totally... I have never seen a pals hated or mistreated simply because they could afford a certain level of care!

 

[Clearwater AL]

FightingAttorney10... I expressed no hate, no envy. I guess it's really about what world one lives in and how far one can see out of it. I hope all goes well for you.