Why does everyone consider this a terminal disease

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johnnyliverpool1

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so you dont understand me.....am glad about that..or you might sue me....but then again you aint no attorney are you.....a pretty good wind up merchant are you not....and a sicko to boot.....that is my opinion and not the opinion of the als forum....sink back into the sespit you crawled out of........johnny
 

ecutchins

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Well let me throw my 2 cents worth into this debate. Firstly, let me say that I have not been diagnosed with ALS but it is still on the table as a possibility. I have spent the last couple of months reading everything I can find in order to educate myself.

I had always said that I would not take extraordinary means to extend my life. I was against a PEG or a vent but my mind has changed after reading several blogs and articles on the internet. I agree that these are very personal decisions that each person and family have to make. If and when the time comes in my life that I have to make these decisions it will be a hard choice and one that I'm not sure I can make. It will be tough and I don't need anonymous strangers on the internet telling me what to do.

Secondly, I'm a little disgusted with the whole medical profession at this point. I don't understand why they haven't figured out what causes ALS. It's my opinion that you need to know what causes it before you can develop a possible cure. I know from reading that some PALS struggle for years before they are diagnosed so wouldn't it be nice if there was a test available that could definitively make the diagnosis. I for one just want to know what I have; is it CIDP or ALS? I think from reading the DIHALS threads that something along these lines would ease a lot of minds.

I'm not sure if I want to be big Pharma's personal guinea pig for possible treatments. I have a hard enough time taking some prescriptions when I know the side effects. I can't imagine taking something that hasn't been tested enough to have some margin of safety. Of course, on the other hand if I actually have a terminal illness I might be more willing to take anything.

I wonder how many people with HIV died while taking some of the drug cocktails that researchers were coming up with for the treatment of HIV. Did the drug cocktail actually kill some people? We will never know.

I'm not going to name names but there has been a lot of juvenile rhetoric in this thread that if presented in a professional and civil manner may have sparked some actual beneficial exchanges. My hands are giving out now but I got this off my chest.
 

FightingAttorney10

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@JohnnyLiverpool, I am indeed an attorney, and your comments are so stupid and poorly written I am not even going to respond. Why don't you get an ALS diagnosis, and stop pretending you have ALS with your UMN syndrome BS. Crawl back to whatever slum you probably live in where your from in the UK.

@ Mich5: Half the country does rely on uncle Sam, it is pretty easy to figure out when Obama was elected to office. I could careless if people want to believe my viewpoints or not, but I only speak the truth, no embellishments. It is clear that you do not know many attorneys' because I am about the least "flippant" of all of them.
 

Tx Daddy's Girl

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Fighting A - you are a typical attorney and are an arrogant ass. What is sad about it is that I agree with a lot of what you are saying but apparently you were never taught to process anyone else's opinions.

My 63yo father is choosing not to vent or have a Peg and I respect his decision because I've seen my cousin, who was locked in, have his family fight tooth and nail to have them removed. Yes, modern medicine can keep one alive for years but at what cost? I value your decision but you must value others as well. You have a young family to fight for and provide for so I understand where you are coming from but you must understand our PALs who feel that they have lived a great life and are okay with going on their own terms; remember, you may very well change your mind.

As far as research and the FDA, I agree 1000% with you. I'm pissed how much the government funds AIDs research, which is largely a lifestyle based disease, yet screws those with diseases like ALS, MS (which I have) and the like. The truth is drug companies can make more $$$ on people who need AIds drugs for the rest of their lives than ALS patients.

Now, I suggest if you want to be taken more seriously you drop the act and respect everyone's views, they are just as scared as you are.

eTA - stop being the grammar police; this is a forum, not the SATs and most people on here need all the energy they have to type. If you want to be picky, it is I could not care less, not careless. Ex: Johnny was careless when he spilled the milk but his mother could not have cared less.
 
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FightingAttorney10

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@Texas Daddy's Girl: I am not an arrogant ass, but sick and tired of the way Pals are treated and not a typical attorney. I do more Pro Bono work for Pals than probably any attorney in the State in which I am licensed. I do value every Pals decision, but I do sense an animosity towards those of us who have the means and can afford to vent. I want people to be well informed that they do not have to die in 1-3 years or whatever nonsense they are told. I am happy we are at least on the same page, and I will try to take some of your advice.
 

FightingAttorney10

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Additionally, pulling a vent with the proper legal papers in place is not the act of God some make it out to be. I am not saying it is not a terrible thing to do, but plenty legal and simple if precautions are in place.
 

johnnyliverpool1

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am not so stupid not to know your a fraud......you even chucked in the bit about your trust fund.....well, trying tohard to big yourself up are we not mr joking attorney.....now dont get yourself all upset and irritated with me...i do live in a slum...blimey, how did you know....your psychic.....maybe...but that means you cant sue me, cos am skint so you would have too spend that make believe trust fund...if you werent so insulting to those on here i would be laughing my socks off at your posts.....have a nice day....johnny
 

kiwisally

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What happened to moving on? Please shut him down, he's stayed well past his ability to provide entertainment value and is now just a bore.
 

ottawa girl

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Kristopher, Esq.

The essence of your message makes sense - it does - it's your presentation which is problematic. If you had simply enumerated the benefits of a vent and your reasoning, the debate would not have gone sideways. It is indeed a subject worthy of discussion. But you add comments about how stupid the doctors are and how smart you are and then you become angry when people get riled? Your message, sadly, gets lost in the extraneous garbage. You want to rally the troops for a much needed attention seeking protest? That's commendable - but invite us. Instill confidence in your abilities to deliver an organized event. Provide the agenda, the list of key note speakers, sponsors etc. this would stimulate interest and create the buzz. I bet a whole long list of folks would sign up to not only participate, but to volunteer as well. If you offer a present wrapped in poop - people aren't likely to open it.

We know all too well, there's been no progress in research. I myself have been banging on doors up here in Canada, writing to parliamentarians, researchers and physicians. Trying to spread awareness. Trying to get DPS up here, for a start.

I have, in my life, been called a few choice names... But your ill-advised use of "retarded" isn't one of them and smacks of your frustration. You read sarcasm where none is written. You threaten litigation, yet submit someone else in your household may have/could have accessed your computer ( and registered here). Honestly, how do you think a jury, a panel of your peers, would interpret your wry explanation of this most peculiar coincidence?

For the record, I ably accept opinions different than my own. For goodness sakes, me - the French Canadian Liberal Catholic has been happily married to an Irish Conservative Protestant. Do we have lively debates? You betcha!

And finally - why is being kind to people - all people - sick people - well people - become so distasteful to you? That really sucks, son. And it's not an attractive quality.

In the words of my dear friend, Phyllis, who died yesterday: " I have met wonderful people with ALS and their families. I pray a lot. Always have prayed but it means so much more to me now. ALS teaches you patience too. I am very calm inside and out."
 

FightingAttorney10

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@JohnnyLiverpool: I am not irritated with you at all, you know as well as I that you are annoyed because you cannot afford appropriate treatment and or venting for your disease. Sorry not my fault. If you read the thread, I said I had a trust fund because people asked me how I would afford care. You do not even have ALS, what are you even doing on this forum with your UMN disease BS diagnosis. Sleep well in your slum:)

@ kiwisally: Do you even have ALS, or are you another one of the 90% on here who pretends to and socializes about it. Why do you want the thread shut down because there are people who agree with me, does that offend you dear.
 

vickim

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You have talked down your nose to all here, and I am really tired of hearing about your pro bono work and having the means to afford what ever you want. Not everyone here cares. Stop tooting your own horn and johnny has more knowledge in his little finger than all the diplomas you own.

He has a very unique sense of humor those of the lower crust can understand. You have no right to talk to any one that way.

If you want to get anywhere here you need to adjust your attitude. If you had just announced your event and introduced yourself and explained what you were about in a nice pleasant manner you might have gotten a little farther. Instead you insult, attack and be little anyone who has anything to say against your opinion.

Honey draws flies better than vinegar. Every minute of anger is 60 seconds of happiness lost. You have caused me to loose enough happiness.
 

Tx Daddy's Girl

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@JohnnyLiverpool: I am not irritated with you at all, you know as well as I that you are annoyed because you cannot afford appropriate treatment and or venting for your disease. Sorry not my fault. If you read the thread, I said I had a trust fund because people asked me how I would afford care. You do not even have ALS, what are you even doing on this forum with your UMN disease BS diagnosis. Sleep well in your slum:)

@ kiwisally: Do you even have ALS, or are you another one of the 90% on here who pretends to and socializes about it. Why do you want the thread shut down because there are people who agree with me, does that offend you dear.

See, you are still at it. I guess a trust fund can't buy manners. Jeez, try being nice. I value your opinion but stop being a jerk!
 
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