Why does everyone consider this a terminal disease

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FightingAttorney10

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Yulee
Everyone needs to wake up and realize ALS is no more terminal than a high spinal cord injury if your willing to vent. Yes I can say this because I am 29 and have been fighting torso onset for 4 years, and I am getting vented within two weeks. With proper management and high quality care we can live 20-30 years. Enough of the medical discrimination and BS 1-3 nonsense.
 
please feel free to publish your real name, your neurologists names and why you chose to vent over a diaphragm pacer
 
Well Joe, I am not a candidate for a pacer number one because I do not have a diaphragm problem, rather a unique case of torso onset ALS that I have been fighting for 4.5 years. My FVC is under the threshold for pacing and it would not help my case anyways. Even if I was a candidate for a pacer I would not do so, and the reason being is that it may buy me 16-20 months of not venting, and I rather put the fatal aspect to the ground. I have several neurologists and I believe that they are about as useless as a car without gasoline after getting a diagnosis. My main neurologist is Dr. Stephen Scelsa at Beth Israel ALS Clinic, and I also have seen wonderful Dr. Boylan at Mayo Clinic in Jacksonville, Florida, not to mention a few others. I have had my pulmonary issues managed by Doctor Jonathan Bach, in Newark, New Jersey, who is about the only one who really knows how to manage pulmonary complications associated with this disease, and has many patients' at 20 and 30 years plus into it. You see, most Pals buy into that a vent will give them a year or whatever nonsense they are told, and I want to put an end to that assumption. I am a routine member at ALSTDI, and merely joined this site to see if what I heard was true. Essentially, to see if it was filled with want to be moderators and a bunch of nonsense. Pals need to wake up and realize that these trials are not conducted properly and have not been for the last 20 years, that we are merely statistics to neuros, and that we face outrageous and unnecessary medical discrimination. I am also on this site to spread the word that protest are currently being organized nationwide to address: the ridiculous FDA process, the failure to render drugs on compassionate use basis, and the overall incompetence of the system. I would rarely publish my name but I will even meet your request: Kristopher R. Reilly, Esq. State of Florida. I hope my response was thorough enough for you.
 
Well Joe, I have seen several wonderful neuros including Stephen Scelsa at Beth Israel and Dr. Boylan at Mayo Clinic, not to mention about 5 others. However, I am managed by doctor Jonathan Bach for my pulmonary needs and he has many patient's 20-30 years into this disease. I am not a candidate for a pacer because I have an extremely weird torso onset in which my diaphragm is not affected but my FVC is below 50%, the cut off limit due to severe torso weakness. Even if I was a candidate for a pacer it would only buy me maybe 24 months, thus I would prefer to really put the disease down. My onset has baffled the so called "ALS SPECIALISTS." You see I joined this forum even though I am a regular member of ALSTDI, because I heard it was heavily moderated by some individuals who dislike members whose viewpoints do not coincide with theirs. I DO NOT like Neuros because they are worthless other than giving a diagnosis and their 1-3 year statements do not take into account addressing the only fatal aspect of this disease which is respiratory failure/ or possibly the need for a Peg Tube. I do not like the discrimination that PALS face and I am working with a group of other lawyer's to try to change the ridiculous FDA process, the ridiculous trial process, and the overall discrimination. Did you know we are considered "terminal" even if we vent, and a vent dependent quad in a car accident is not. Furthermore, we are discouraged to vent by most neuros who just treat us as a statistics. There are major nationwide demonstrations coming in early January so maybe help by spreading the word. I normally would never post my name but here it is: Kristopher R. Reilly, Esq. State of Florida.
 
Joe, please feel free to get annoyed with my response since you seem to want to buy into the neuros and their BS. Why don't you publish your real name, your pulmonologist that manages you, and the ill informed and incompetent neuro that you see. Let me guess you have seen wonderful Merit C at Mass General who gave you the 1-3, or 2-5 BS talk, am I correct? You can flag my post as being rude to the moderators because I really could careless, as your response to me was not made in good faith. People just do not want to accept that they do not have to die of ALS, well at least not in the timeframes they are told, and most of the time it is because they are not willing to sacrifice and put it all on the line. Maybe if more Pals would put it all on the line, there would be more incentive for drug companies to get us a treatment since we would live at least a decade at minimum with the disease. With mediocre care venting adds about 7 years of life and those studies are outdated. Now with top level care and a little luck 20-30 years is indeed very doable.
 
I also am on the other place, but mainly read. I think both forums serve a purpose.
 
People just do not want to accept that they do not have to die of ALS, well at least not in the timeframes they are told, and most of the time it is because they are not willing to sacrifice and put it all on the line. Maybe if more Pals would put it all on the line, there would be more incentive for drug companies to get us a treatment since we would live at least a decade at minimum with the disease. With mediocre care venting adds about 7 years of life and those studies are outdated. Now with top level care and a little luck 20-30 years is indeed very doable.
Give me a break... you think I "want" to accept a 3-5 year live expectancy in my 50's. What I choose to not accept (like 95% + of people) is life....if you choose to call it that, on a vent. If that is your definition of life then good for you, go for it, but spare me the lecture.
 
Joe,
Managing ALS is a personal choice up to a different point for everyone. It's great that you have the resources to implement your preference (get vented). Not everyone does, as you pointed out.

ALS is characterized as terminal when many high C's are not because the data suggests that the natural hx w/o venting is that most ALS pts will die sooner and of ALS respiratory failure as opposed to the high quad who could well die of sepsis instead as did, most famously, Christopher Reeve, despite 24/7 caregiver coverage. Apples to apples, vent to vent, the ALS pt has a shorter actuarial survival. The primary reason? Continued deterioration. The quad's status can be improved w/ decompression surgery (if/as indicated)/PT/rehab, after which stabilization is expected. Not so here.

I'm not critiquing anyone's decision to vent or not, but characterizing a terminal disease as terminal is not a medical conspiracy but a statement of fact. How long, hard and invasively anyone chooses to fight death is the last choice we have. But to choose wisely for oneself requires objective information, not sweeping generalizations. If wishes were horses...

I have read some of Dr. Bach's papers and he may well have an optimal approach for some ALS patients. But for some, such as my husband, a low EPAP, for example, is simply not possible. As with any treatment modality, all PALS find "the best of a bad lot" as they judge the matter. That you've settled on yours, does not, I think, confer upon you the right to critique others' based on the evidence available thus far, nor to confer false hope for a life expectancy that you yourself have not yet enjoyed, though I certainly hope you do. Some PALS do live for decades with a vent. Every such long-timer I have heard of/known ultimately has died by chance or choice of ALS, apart from Stephen Hawking, of whose definitive diagnosis I am not aware. That would make ALS pretty "terminal," and, as you know, most don't last decades.

Rage against the dying of the light as strongly as you wish. However, you needn't rage against your fellow PALS as you do so.
 
@Kiwisally, I could really careless which option you choose, hey it is indeed your life not mine. I am just sick and tired of this being labeled a "terminal" disease when in fact it is not anymore terminal than a high SCI. Maybe less so since we can feel our bodies and thus can determine if pressure sores, etc. are developing. 95% of Pals do not vent and some for financial reasons, the "fear of venting given to them from medical personnel", the idea of increased caregiver burden and not truly knowing how many years of life it can add. I do not care which option anyone chooses, however, I am going to stop the misinformation given.
 
@IgelB, I completely disagree with your statements, and I do not confer false hope for any life expectancy that I myself have not endured. The facts speak for themselves, with mediocre care a vent will add 7-10 years of life expectancy. Furthermore, Dr. Bach has personally told me that no one with ALS Needs to die of respiratory complications associated with the disease, and I have met many of his patient's who are 20-30 plus years post diagnosis. I also disagree entirely with your statements about spinal cord injury victims and vent dependent quadriplegics. Vent dependent quadriplegics cannot feel their bodies, and thus are at a disadvantage to Pals. Additionally, a Pal is in the shape of a vent dependent quadriplegic when they are at their worst. I am not raging against Pals, rather raging against the system itself because we are indeed discriminated against. In my opinion, this disease should ONLY be considered terminal for those who do not chose life extending measures. Do you notice that there are rarely statistics published for those who chose to go on life extending measures, we are considered "dead" at the time we vent. A spinal cord injury victim sure as heck is not, rather they are vented and encouraged to live life as long as possible. People are very naïve and think all these ALS Clinics, researchers, and such have their best interests in mind. The false hope does not come from me but rather the BS trials that are not conducted properly, the lack of movement to get drugs to the mainstream market, and the overall conspiracy of the "ALS" industry. Pals are naïve and they need to wake up or it will only continue.
 
oh...i do dislike ..know alls who state the obvious...........johnny
 
@ fightingAttorney

"I am a routine member at ALSTDI, and merely joined this site to see if what I heard was true. Essentially, to see if it was filled with want to be moderators and a bunch of nonsense."



Moderated? nonsense?

Your musings are posted aren't they? I suspect what you "heard" was misleading.

Each forum serves its constituency. Diminishing one site does not raise the other. I have never read a disparaging remark here about your preferred site or any if its members. The same cannot be said about your beloved ALSTDI, but I digress.

Thought provoking debate is healthy and we can agree to disagree.

In keeping with this forum owner's vision and longstanding commitment to the ALS community, there is a clear line in the sand:

ALSforums is a free service intended to bridge gaps between individuals living with the affects of ALS/MND - caregivers, family members, and people affected by ALS (PALS).

Individuals at different stages of the “ALS journey” are able to come together and exchange knowledge, and lend support to other PALS.

The forums are meant to be a place for people with similar circumstances to ask questions, get answers, and form lasting friendships.

ALSforums moderates each forum and works hard to ensure members are not taken advantage of, or misled by false or misleading forum participants.



If you spend anytime at all here ( as FA10 or CRR10) you will surely find we are not sheep going to slaughter without a fight. But your fight may not be someone else's goal. Your distaste for the medical establishment is not shared by everyone. Perhaps, the other forum is a better fit for you after all. You may find a wider accepting and agreeable audience.
 
Dear Fighting A...

When you speak of 20-30 years of high quality care, are you thinking of a spouse? a parent? a friend? a child?--all of whom would have to be fully and 24/7 engaged in your treatment. Doctors only recommend and prescribe. They are not available at your bedside in the middle of the night. Further, many nursing facilities do not accept vented patients.

You do not like the word "terminal." So I say--you can establish whatever parameters you wish for defining your illness. But realize that others are more accepting of reality.

My husband also began his ALS journey with the torso onset four years ago. He is doing well with non-invasive ventilation. But our acquaintence with the experience of others and the literature on the illness force us to accept the inevitable--an unanticipated, fluke event will herald the slide (however gentle or excruciating) toward the end. Humans can rail all they want, but we are surrounded by one disease or another that will take us down.

Good luck in your journey. Stop in and visit sometime. Bring a sandwich.

Vl
 
Sounds like someone is actually in.............DENIAL !
 
FightingAttorney10,
Well, the 'name' befits your entry to the forum! A couple of points...
1) Righteous indignation and brave indifference to the opinions of others are more appropriately expressed if you don't screw up the phrase you use to express them: It's "I could not care less", not "I could careless." Attention to detail, Barrister.
2) Good for you for choosing to vent and live as long as that will allow you. I really do hope your care and quality of life are excellent. But you hold a pretty (falsely) high opinion of yourself if you think that I, or anyone else, are not "putting it all on the line" if we choose a different course of treatment. Regarding my own choices, I will make them as I see fit and could not care less how they compare to yours. Is this the point at which I am supposed to tell you that you're buying into some neuro's BS claim that he can offer you untold years with ALS? Nah, you're just choosing a different approach, not a right or wrong one.
Best of luck to you.
 
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