Why does everyone consider this a terminal disease

[FightingAttorney10]

Jeff, I did not party through college, and I just cannot seem to get through to you, and I can tell your an educated person. The medical system, researchers, the FDA, and beyond has failed Pals. No my degree is not worthless when dealing with ALS, because I am in a unique situation in which I can petition the FDA, and try to get things moving for everyone. I am attempting to do this with a group of dedicated attorneys'. I agree that a degree means nothing, but I am a very smart and intelligent individual. Even though I have a trust fund, it did not become active until I was 25 years old, so I worked my way through the system like everyone else. I am not arrogant but very annoyed with the system, and want to change it drastically.

 

[vickim]

No one said anything about being banned. You yourself stated that you didn't feel anyone here was qualified to make a rational decision about their health and life and were going to move on. So....waiting, and you leave Edwards5257 alone. You don't know diddlie squat about anything other than what you have read in books...go get some life experience and come back when you have learned something of living in the real world.

I am not judging you...just reading the words you are putting out there for all to read. All you have done is brag about your education and trust fund and it is you who playing is judge and jury.

 

[Jeff Long]

No my degree is not worthless when dealing with ALS, because I am in a unique situation in which I can petition the FDA, and try to get things moving for everyone. I am attempting to do this with a group of dedicated attorneys'.

Great, just try harder not to pi$$ off the very people you say you're trying to help. Not because you need them, but because treating people with a little respect goes a long way.
That said, my comment about partying through school was out of line.

 

[FightingAttorney10]

@Vickim, excuse me I live in the real world, and I have been fighting torso onset ALS since I was 25 years old. I did not brag about any trust fund, but was directly asked how I could afford the best care when necessary. The real world for me consists of living on an LTV1200 Sip and Puff ventilator for about 16 hours a day, and barely being able to sit up my back is so weak, thus DO NOT tell me about the real world. I work about 80 hour weeks in a very disabled condition, while half the country sits on their *** and milks from Obama and Uncle Sam. Thus, my real world does not look to pretty. I know more about the "system" than most people who are double my age. I know in the "real world" the chances of changing this backwards system are about 10% if that, thus I am in reality. However, someone needs to try to do it.

 

[olly]

Ok Mr attorney you are advocating for the right to vent.
We got your message loud and clear and now its up to each individual to make there OWN decision .......you can not drum it into someone's head or ram it down there throat.
You certainly can not threaten or bully people into your way of thinking.
Enough,its time to move on as this thread is not going anywhere.

 

[vickim]

Well knock your self out...jump on it ...go get em but don't preach to the people here. Save that for the ones you are trying to change. Direct your anger where it belongs and it ain't here. You want to talk to people here you can do it without getting on your soap box.

 

[FightingAttorney10]

Daisy, I am not advocating for the right of people to vent, rather advocating for the access to drugs that we all desperately need. I could really careless about the decisions people make for themselves. The FDA, and the system must be changed.

 

[kiwisally]

Seriously, you really think you " have not demeaned or insulted anyone on this board" and are "a warm and compassionate person". Wake up, saying you don't want to get to know some one because you think they are brainwashed and calling their statements the most "retarded" you have ever heard doesn't fall under "warm and compassionate". I don't dislike your position on vents I dislike your approach to pushing your agenda.

People are not taking down to you because of your vent position, they are talking down to you because you act like a child.

 

[FightingAttorney10]

@Vickim, the people here are part of the constituents that are needed to help change the reality of the system. However, it seems to me that they are fine with how it is, thus if that is so I will take my work back to ALSTDI and in the direction of people who understand what is really going on. I am sorry for coming off harsh, and possibly arrogant, but a movement and a major one is what is needed. This coping with how things are when they may be able to be changed is not acceptable to me. I do not mean coping with the disease, rather coping with a system that has failed us for the last 150 years. Please realize that there has not be one effective treatment for this disease in over 150 years, and the reason is utter failure of researchers, the FDA, and the lack of true urgency. Rilutek which was invented by a French Researcher along with the help of Rothstein at JH was a joke that should have never made it to the market, just another money making scam on Pals in desperation. Do you think HIV became a manageable condition because people sat around and accepted their fate, no they marched on Wall Street to get the price for the first and only drug(AZT) lowered. The gay community marched in the streets, and look HIV is now a manageable condition. I just do not understand why Pals/Cals do not demand the same.

 

[kiwisally]

Jeff types a lot faster than I do, LOL

 

[FightingAttorney10]

Not a single comment. I will just have to move on and try to convince others that a movement is necessary.

 

[kiwisally]

Not a single comment. I will just have to move on and try to convince others that a movement is necessary.

Godspeed..................

 

[Txgirl]

@FA10- The reason you are met with so much resistance is simple. Out of this whole entire almost 5 pages of replies. Only 4 people (including you & I) actually have ALS! This forum is 90% non-PALs. They come here to socialize & visit. They have ran most of the PALs away and this is what’s left.

I am not suppose to post here because my membership was threatened if I did so. I couldn’t care less about being a member of this forum any longer.
I admire you for what you are trying to do for yourself & other PALs. We need the compassionate drugs that are available. The FDA will not make them available to us! I appreciate your hard work.

 

[olly]

Mr attorney I do understand what your saying with regards to trying to raise awareness for treatments ect ect.
I totally agree,als gets swept under the carpet and something needs to be done.
I think your intentions are good ones but with your postings in this thread you have gone the wrong way about it.
You can not jump in someones face and thrust your opinions on them without them saying "wow,hang on a minute"
If your thread is really about raising awareness for finding treatments or cure then everyone here would be intrested i'm sure...we have a forum for that.
We have had information from the other forum about treatments here and any information shared is most welcome.
But the venting is a personable thing where no one is right or wrong.

If your wondering who daisy is its me on the alstdi forum...olly was already taken lol.

 

[mich5]

FA, your statement 'while half the country . . . milks . . . uncle Sam' is not intelligent and statements like these may lead many to dismiss everything else you post as being inflated and not factual. I don't know very many attorneys who would be flippant and use an inflated statistic and then think people will believe the rest of what they say is intelligent and truthful - and not embellished.