Why does everyone consider this a terminal disease
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FightingAttorney10
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@OTTAWAGIRL, I am not CRR10, so you better get your information straight. Furthermore, your friends do not like those whose opinions differ from theirs. DO NOT claim I am somebody who I am not as I am not CRR10. ALSTDI is filled with individuals who do not just sit back and let this disease take over without putting up one heck of a fight, and individuals who do not buy into the BS medical establishment. I know of three past members of this site that you irritated so much they decided to leave. I am not here to slaughter anyone, but rather to spread some knowledge that may be useful for some. Furthermore, people are being led to slaughter not by me, but due to the incompetency of the medical community, misinformation, and horrible methods of research towards this disease. Pals NEED to wake up, it has been 17 years since one garbage drug was placed on the market. We need treatment and NOW. NP001 should be on the market, alongside MCI-186, and a few other drugs to say the least.
ALSforums moderates each forum and works hard to ensure members are not taken advantage of, or misled by false or misleading forum participants. (Well if you want to try to argue that I violate this principle, you are clearly being arrogant and it would be an unfounded assumption) I provide very accurate and well thought out information to encourage people to get all the information that is out there, prior to letting "ALS SPECIALISTS" convince them to cut their life short.
@Bowser: I was in denial for a long time, meaning that I could not survive with appropriate care, but in 2013 ALS is a very survivable disease. Meaning if your wife is willing to vent she can stay around probably a very long time. I am sorry to hear she is in the end stages of the disease.
@Vlcare: Sorry to hear about the torso onset diagnosis, it is a real pain to deal with. Personally, I can do fine with noninvasive ventilation too, but I would prefer a trachea. As far as care is concerned I have a trust fund and I continue to work so I will be covered in that department for a long while. I am extremely accepting of reality, my illness is "terminal" without a vent. That is reality. I just do not like this 1-3 BS from neuros and their nonsense, when there is no reason that while venting one cannot make it at least a decade. How is the rest of your husband doing? Can he walk, talk, eat, use arms, etc. You are actually the first person I have come across who is a Cals to someone with Torso Onset.
@Johnny: You do not even make sense.
I may not stick around because I wanted to catch the vibe on this forum, and it seems to me all the Pals want to sit back and not demand action to be taken. I may promote my agenda somewhere else.
ALSforums moderates each forum and works hard to ensure members are not taken advantage of, or misled by false or misleading forum participants. (Well if you want to try to argue that I violate this principle, you are clearly being arrogant and it would be an unfounded assumption) I provide very accurate and well thought out information to encourage people to get all the information that is out there, prior to letting "ALS SPECIALISTS" convince them to cut their life short.
@Bowser: I was in denial for a long time, meaning that I could not survive with appropriate care, but in 2013 ALS is a very survivable disease. Meaning if your wife is willing to vent she can stay around probably a very long time. I am sorry to hear she is in the end stages of the disease.
@Vlcare: Sorry to hear about the torso onset diagnosis, it is a real pain to deal with. Personally, I can do fine with noninvasive ventilation too, but I would prefer a trachea. As far as care is concerned I have a trust fund and I continue to work so I will be covered in that department for a long while. I am extremely accepting of reality, my illness is "terminal" without a vent. That is reality. I just do not like this 1-3 BS from neuros and their nonsense, when there is no reason that while venting one cannot make it at least a decade. How is the rest of your husband doing? Can he walk, talk, eat, use arms, etc. You are actually the first person I have come across who is a Cals to someone with Torso Onset.
@Johnny: You do not even make sense.
I may not stick around because I wanted to catch the vibe on this forum, and it seems to me all the Pals want to sit back and not demand action to be taken. I may promote my agenda somewhere else.
olly
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Als is terminal in the fact that only mechanical intervention could prolong life but the pal is still at high risk of dying from infection.
It has personal and financial implications depending on support and where you live.
Here in the uk venting is not an option available to pals as it is classed as terminal unless they are rich enough to pay for the cost of expensive private care....such as Mr hawkings.
So,its not always a matter of choice....a pal may want to vent but they can't.
Loved your post Elaine....perfect!
Just add,did not mr reeves die of infection despite vent?
Our beloved mr joel was a vent advocate but thought it too burdensome for his family so went into hospital and had it removed. He left us a moving farewell message giving his reasons,i will find it for you.
It has personal and financial implications depending on support and where you live.
Here in the uk venting is not an option available to pals as it is classed as terminal unless they are rich enough to pay for the cost of expensive private care....such as Mr hawkings.
So,its not always a matter of choice....a pal may want to vent but they can't.
Loved your post Elaine....perfect!
Just add,did not mr reeves die of infection despite vent?
Our beloved mr joel was a vent advocate but thought it too burdensome for his family so went into hospital and had it removed. He left us a moving farewell message giving his reasons,i will find it for you.
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FightingAttorney10
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@Olly, I understand the UK system, and I honestly think it is disgraceful and screwed up to say the least. It is indeed unfair how the system works. However, I think you are indeed being a little hypocritical with your post, because I read posts from years ago between you and many Pals, that told them it was indeed medical discrimination to consider a vented Pal as terminal. I am not trying to start a war on this forum, but just seeing if it really is moderated and how different it is than ALSTDI.
Jeff Long
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olly
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Sorry,found that it was deleted as it upset some people.
He still has a blog available to read advocating venting.......but he does say if you are able to given your circumstances.
As I said he fought to have a vent but found reality quite different after,then had to fight to get it removed.
No one really knows until the time comes what is best...its just not that simple.
He still has a blog available to read advocating venting.......but he does say if you are able to given your circumstances.
As I said he fought to have a vent but found reality quite different after,then had to fight to get it removed.
No one really knows until the time comes what is best...its just not that simple.
FightingAttorney10
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I agree with you OLLY no one does know. However, why did JoelC's blogs have to be deleted because they "offended some people." I am sorry but I agree entirely with JoelC on the matter, and even though he took the course of action he did, may his soul rest in peace. He was an amazing man to this community, and it seems like there is also economic hatred between Pals too. Meaning the ones who are not fortunate enough to vent, have a bitter animosity towards the ones who are. I DO NOT care about anyone's decision regarding the matter, however, if I listened to my stupid neurologist I would unnecessarily be in the ground very shortly.
Jeff Long
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Kristopher,
Do you really believe that anyone here has animosity toward you because you have the financial means to vent?!? I think if you step back and ponder for a moment you'll find that, while there is some animosity, it has nothing to do with money. Attitude (i.e. you are all stupid for believing those lying SOB doctors and aren't as smart as I am for choosing to 'fight') is more your problem. For those of us with the financial means but not the desire to vent, what say you?
And hey, kudos for getting the 'NOT' part of caring correct! You may be young, but at least your trainable.
FightingAttorney10
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Mr. Long, I do think that Pals are treated like absolute garbage from the medical community. Neurologists and their clinical trials have been designed to fail for the last 20 years. Anybody with half a brain knows that single drugs trials are a failure, and that this disease has about 5-6 targets that must be modulated. Furthermore, the FDA, so called researchers, and many others are to blame. HIV became a chronic and manageable disease within about a ten year period, and the reason being was real activism, the effect it had on a large community, and proper organization. I do indeed believe that other Pals routinely have animosity towards those who chose to accept life extending measures. I am not quite sure if it is about the money, or if it is simple that they do not feel capable of riding the storm. You see Mr. Long, I do not have a choice but to suffer and ride the storm until my body is scraped off of planet Earth. The reason being is that I have a newborn baby girl, and I will fight down to my eyes, vented, and probably locked in to be in her life. I think Pals have every right to chose not to vent, and if I was older(meaning 60 or 70), I may do the same. However, at my age, and with a child sometimes one must sacrifice themselves for the greater good. Also, I could tear apart your grammar and sentence structure, but I am using only 4 fingers so give me a break.
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@Fightingattorney
Perhaps my mistake FA10 - but
CRR10 just happens to be another young Florida lawyer with your symptoms, mindset and oh - with the same IP address. How weird is that? Perhaps he snagged your lap top in Dr. Scelsa's waiting room when you weren't looking? Anything is possible. Oh - maybe you purchased a used computer or the Florida network crossed their fiber optics? In any case, you will no doubt agree with me that the CRR10 dude is one heck of a nice guy - he even offered PALS pro bono counsel.
So the good folks at ALSTDI don't just sit back... You're right - many gossip (lie) and malign the good people here. That's curative! That's supportive! That's kind! That's a fine way to play the end game.
So please FA - remind everyone - why exactly are you here? Drumming up business? You want to enlighten us with your knowledge? If we all agree to get vents, will that satisfy you? Or do we also have to discharge our neurologists and ALS clinics too?
We are not ill informed victims here, and it is condescending to suggest we are.
You're proof in the pudding FA - we now know with certainty why there more jokes about lawyers than there are about doctors.
Perhaps my mistake FA10 - but
CRR10 just happens to be another young Florida lawyer with your symptoms, mindset and oh - with the same IP address. How weird is that? Perhaps he snagged your lap top in Dr. Scelsa's waiting room when you weren't looking? Anything is possible. Oh - maybe you purchased a used computer or the Florida network crossed their fiber optics? In any case, you will no doubt agree with me that the CRR10 dude is one heck of a nice guy - he even offered PALS pro bono counsel.
So the good folks at ALSTDI don't just sit back... You're right - many gossip (lie) and malign the good people here. That's curative! That's supportive! That's kind! That's a fine way to play the end game.
So please FA - remind everyone - why exactly are you here? Drumming up business? You want to enlighten us with your knowledge? If we all agree to get vents, will that satisfy you? Or do we also have to discharge our neurologists and ALS clinics too?
We are not ill informed victims here, and it is condescending to suggest we are.
You're proof in the pudding FA - we now know with certainty why there more jokes about lawyers than there are about doctors.
Don't you just hate it the way those Freudian slips bite you in the arse. You care, you care so much you marched yourself right over to set this stupid 95% straight. Wise'm up and they will come around to you way of thinking, eh? It's not misinformation or fear generated by the medical profession that influences the vast majority. It's not even cash flow really. It's a choice about quality of life both for ourselves and our loved ones. And that, dear Sigmund is what riled this group up. You thinking your decisions are right for everyone. People take offense at that.
While I'm bothering with you... for someone with such a hopeless opinion of the medical community in general and the competency and intelligence of 95% of people specifically you sure are picking one hard row to hoe going down the vent route, be it one day or thirty years.
Good luck, really, you are going to need it.
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Hello, again, Fighting A:
To answer your question, at the time my husband was formally diagnosed in 2010, his best case FVC was 65. He was using accessory muscles to breathe. His prognosis according to two ALS physicians was dim. One recommended PEG immediately. Both pointed out that an early decision of whether or not to trache would be important. My husband said no to each. We had interviewed two pulmonolgists and asked if they would recommend a trache for their family members or themselves. Each said absolutely not.
To his credit, the ALS Clinic neurologist decided to recommend the Trilogy, a non-invasive portable ventilator. It was a godsend. It allows us to go out to medical appointments and elsewhere easily. It allows my husband to move about the house easily. He has also taught himself to eat fruit and other items while the Trilogy is functioning and his nasal mask is in place.
He has limited use of his hands and arms. He can still use a pencil for crosswords; he can feed himself most food except soup; he cannot stand at all; he has no bulbar symptoms; his speech is unaffected; he sleeps well with a bi-pap; he must be transferred by hoyer lift in and out of bed; in and out of his power chair; in and out of the toilet chair.
He reads the Los Angeles Times cover to cover every day, along with everything else I print for him from the Internet (he is not computer literate). His mind is sharp and I have to keep a good supply of fiction on hand to satisfy his reading requirements.
Our daily goal is to maintain momentum. My job is to stay alert and his job is to stay centered.
I will give you this advice: forget the "big" picture about fighting BS. Think about where you will live; how well you will live; how you will get around; who will help with the myriad little tasks that will become all consuming over time. Eventually, logistics will guide everything useful to you.
You sound like someone with energy. Chase a cause that is winnable. Good luck.
VL
To answer your question, at the time my husband was formally diagnosed in 2010, his best case FVC was 65. He was using accessory muscles to breathe. His prognosis according to two ALS physicians was dim. One recommended PEG immediately. Both pointed out that an early decision of whether or not to trache would be important. My husband said no to each. We had interviewed two pulmonolgists and asked if they would recommend a trache for their family members or themselves. Each said absolutely not.
To his credit, the ALS Clinic neurologist decided to recommend the Trilogy, a non-invasive portable ventilator. It was a godsend. It allows us to go out to medical appointments and elsewhere easily. It allows my husband to move about the house easily. He has also taught himself to eat fruit and other items while the Trilogy is functioning and his nasal mask is in place.
He has limited use of his hands and arms. He can still use a pencil for crosswords; he can feed himself most food except soup; he cannot stand at all; he has no bulbar symptoms; his speech is unaffected; he sleeps well with a bi-pap; he must be transferred by hoyer lift in and out of bed; in and out of his power chair; in and out of the toilet chair.
He reads the Los Angeles Times cover to cover every day, along with everything else I print for him from the Internet (he is not computer literate). His mind is sharp and I have to keep a good supply of fiction on hand to satisfy his reading requirements.
Our daily goal is to maintain momentum. My job is to stay alert and his job is to stay centered.
I will give you this advice: forget the "big" picture about fighting BS. Think about where you will live; how well you will live; how you will get around; who will help with the myriad little tasks that will become all consuming over time. Eventually, logistics will guide everything useful to you.
You sound like someone with energy. Chase a cause that is winnable. Good luck.
VL
FightingAttorney10
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Ottawa Girl, I am not CRR10, and if you continue to insinuate accusations against me that are unfounded I will bring legal action against this organization. Maybe there is someone else with the same set of circumstances, and I would be interested in meeting them, but it surely is not me. There is another attorney I am friends with who happens to be very young, that lives in Florida, and does suffer from ALS. Unfortunately, in the past week I have met about 5 people in their mid to late twenties affected by this disease, and one of them had an onset very similar to mine. Many people use my IP address Elaine as this is a household computer. I do provide Pro Bono work for many pals, thus is that a problem with you. I could careless if anyone of you wants to vent, hey if you want to die an untimely death be my guest. What do you do for a living might I ask? Does it offend you Elaine that I hold a doctorate degree and I am young enough to be your son, and I am about to earn a CPA degree too. There is no such thing as an "ALS SPECIALISTS", a specialist does more than simply diagnose a disease and tell their patient's you have 1-3 years to live, without explaining the options. I am certainly not here to "drum up business", as I make plenty of money, and I have a trust fund with enough to travel the world indefinitely. I came here to see how misinformed some Pals may be about their options, and as I expected very misinformed. My agenda is to get Pals to wake up and to protest against the system in an organized and orderly format. Certain doctor's should be ashamed of themselves for helping to bring worthless drugs to the market, like the infamous Rilutek, and making Pals into another scientific "study." Maybe your clinic is wonderful, however, in my experience it is called palliative care only and almost all neurologists discourage us from venting. "ALS SPECIALISTS" rarely perform planned tracheostomies because they want the FVC to be under 20% and at that point we might as well be dead. This is why so many emergency tracheostomies happen due to the wonderful judgment. I am here to inform members, those who have a brain that major protests are coming on 1/6/2014 throughout the United States. Those who can or want to participate feel free to join, if you do not want to participate that is fine to. Best Regards,
Jeff Long
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Kristopher,
First, please call me Jeff. Mr. Long makes me feel old, which I am. I used my name in creating this account because I have no issue with claiming the (often stupid) things I say here.
Congratulations on the birth of your baby girl; IMO nothing in the world can compare to being a parent. I have three daughters, so I know how amazing that is. It's as close the heaven as we get before we actually die!
WRT the research/trials/drugs for ALS, I can't argue that they are perfect but would argue the point you make that they are "designed to fail." They are failing within a faulty, over-regulated structure that needs to be refined, not eliminated. Rogue healthcare professionals aren't going to solve the riddle of this disease any faster and, IMO, would cause more harm along the way. Uncontrolled is not the answer to over-controlled and will lead to a research effort that is all thrust and no vector. Going fast is only beneficial if you're going in the right direction.
I respect your determination to fight this disease by any means, and to any end, as well as your reasons for doing so. Hell, had you made your case differently from the onset I may even have agreed with more of your issues. Unaimed words, like bombs and bullets, often cause unintended collateral damage.
Your daughter, my son and daughters, all of the PALS' families drew the short straw when we were diagnosed. I hate ALS more for them than for myself.
Unsolicited advice... craft the legacy you want to leave for your baby girl and give it your all. No matter what comes from ALS or life, she will have that to hold forever. I wish you all the luck and blessings in the world to that end.
Because I'm older and 3/4 of my kids are grown, I've already had time to do that. I choose not to die locked in, or anything close to it, and have them sift through memories of changing my diapers, sucking mucous or chatting with the 'ravaged body formerly known as Dad' to recall what that legacy is. That's just my personal choice.
Fight on, Kristopher, and best of luck.
First, please call me Jeff. Mr. Long makes me feel old, which I am. I used my name in creating this account because I have no issue with claiming the (often stupid) things I say here.
Congratulations on the birth of your baby girl; IMO nothing in the world can compare to being a parent. I have three daughters, so I know how amazing that is. It's as close the heaven as we get before we actually die!
WRT the research/trials/drugs for ALS, I can't argue that they are perfect but would argue the point you make that they are "designed to fail." They are failing within a faulty, over-regulated structure that needs to be refined, not eliminated. Rogue healthcare professionals aren't going to solve the riddle of this disease any faster and, IMO, would cause more harm along the way. Uncontrolled is not the answer to over-controlled and will lead to a research effort that is all thrust and no vector. Going fast is only beneficial if you're going in the right direction.
I respect your determination to fight this disease by any means, and to any end, as well as your reasons for doing so. Hell, had you made your case differently from the onset I may even have agreed with more of your issues. Unaimed words, like bombs and bullets, often cause unintended collateral damage.
Your daughter, my son and daughters, all of the PALS' families drew the short straw when we were diagnosed. I hate ALS more for them than for myself.
Unsolicited advice... craft the legacy you want to leave for your baby girl and give it your all. No matter what comes from ALS or life, she will have that to hold forever. I wish you all the luck and blessings in the world to that end.
Because I'm older and 3/4 of my kids are grown, I've already had time to do that. I choose not to die locked in, or anything close to it, and have them sift through memories of changing my diapers, sucking mucous or chatting with the 'ravaged body formerly known as Dad' to recall what that legacy is. That's just my personal choice.
Fight on, Kristopher, and best of luck.
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