Did I not say in my post that "I can't do all that alone"? Have I not been trying for months to "mobilize" as you have suggested?
Ok................then also tell me this. You are talking about very ill people when you are talking about getting them to do all of the above. Do you suffer from MS, Wesley? Do you have ANY real idea what it's like? Do you? Do you know what it's like not to be able to stay awake for more than a few hours at a time? Do you know how it feels for it to take every single ounce of your strength just to raise your arms above your head, or how hard it is to even dress yourself in the morning? To walk, to go to the bathroom, to SEE without flashing lights and blind spots and double-vision? To try to get through the day struggling with the pain, the sensory shocks, the stabbing pains that hit you from out of the blue as if someone suddenly came up behind you and stuck a knife in your leg? And we haven't even gotten to the cognitive problems yet. Try sometime to read something simple and suddenly realize that you can't!!!
Then while all of the above is going on, try to continue working. TRY to continue to support your family while your life is going down the drain and you can't stop it! Try getting disability or social security. Try getting insurance. TRY IT!!!!!!!
Try scraping together enough pennies to buy food first, THEN talk to me about "organizing" MSers so they can buy stock, and rally, and march, and raise your children, and clean your house, and try to cook.
I'm going to tell you something, Wesley. I went to Miami in November, 2003 to march in the FTAA March. Try walking in a city enclosed by gates and swat teams, while your knee collapses and your hip gives out, and the pain is killing you. TRY IT!
Look at your post again. You are talking to sufferers of multiple sclerosis, Wesley. The very ones YOU claim you are wanting to help. First, you need to walk in their shoes, Wesley.
And if you have or do, then your post is all the more demeaning as to its suggestions.
Maybe you weren't meaning to sound sarcastic here, but I'm respectfully telling you that's exactly how you came across. And if you are against unions, that's neither here nor there. But I highly resent, on behalf of every person with MS, your "go, go, go" suggestions to people who can barely get up in the morning, and then can barely stay asleep at night.
The way TO join forces is to do what we can for and through large organizations ALREADY ORGANIZED for our benefit!
Become a REAL part of the MS world Wesley. Join us. We need all the "healthy" people we can get to HELP us do all of those very things and extremely strenuous physical and mental activities you so respectfully (and I use that term loosely) suggested.
And while you are doing that as a person with MS, TRY getting medical treatment from the very neurologists you need to see for treatment, who have suddenly REFUSED to treat you BECAUSE you are doing all of the things you have suggested, which interferes with and shakes up their content little world.
Walk a mile in my life and shoes, Wesley. Try it! IF you dare. THEN you talk to me (and us) about all the "things" we should "do".
EDIT: And by the way, WHO was it again who helped YOU get on the "inside" a bit with YOUR research???
And if you think for ONE second that I exaggerate even the tiniest bit about exactly WHO some of the people are and/or who they are "associated" with that we are "messing" with, then you need to think again.
(My apologies, folks, but this just rubbed me the wrong way.) I have been and still AM on the receiving side of the kind of social and professional and governmental "treatment" we all get. I don't give a rip WHAT anybody wants to say I have or don't have. Neurologically, it can't be differentiated. ALS, MS, CNS disease.........one and the same. Do I suffer? You bet!! And do I keep fighting the best I can? Yes, I do!
Again, I'm sorry...........but I guess I'll retire to bed now, and TRY to find SOME position that allows me to sleep for a few minutes without the pain from the pressure of just laying on my own body waking me back up!
(Man, I'm fuming!! THIS is what I want to see an MS representative go on the Larry King show and tell the world!! Let's tell it like it REALLY is! And the above is still only during the EARLY stages of MS!)
I'm going to bed now for sure! Good night, all.
SECOND EDIT: Oh, and by the way...............don't underestimate who all reads this website and our posts, Wesley. Have you ever "considered" just how much influence or communication actually gets to where you are wanting it to go with each and every post we put on this website? Trust me, it isn't just people with MS or their loved ones who read this particular website, Wesley. Don't underestimate the power of the internet itself. This website especially. You might be surprised who all visits this site.
Last edited by OddDuck
on Sun Feb 27, 2005 5:58 pm, edited 1 time in total.