AMEN Melody,
I don't have the disease directly, but yes I have Gary's disease. I gave up my dreams to take care of him. I give up every day and I don't have anything wrong with me, directly. I hurt when he hurts, because I can't make it better. It hurts like hell to watch the one you love deterioate before your very eyes. But other than the sickness, I would not have it any other way. I took to heart the wedding vows; in sickness and in health. I just wished it would have been more health. LOL I don't think about tomorrow, next week, or next year as far as the bad side of Gary's disease goes. I HOPE and I HOPE everyday. Miraculous cures are not out of the question. Everyday brings a researcher closer to a cure or at least a better control. JUst keep HOPING
I eliminated my post
Chris55 wrote:
Twisted Helix
I agree with JFH
and it would indeed be a pity for us not to be able to continue to learn from you.
Sharon
Do you have any respect at all, I mean just an iota, for the experience, knowledge, expertise, wisdom and "cynicism with a spam filter" of someone who has lived with this disease for many years?The fact that you have tried it all to no avail--and God, I am so sorry for that!--should not take away the hope of others who have NOT tried it all yet!
Twisted Helix
I agree with JFH
you've the experience and voice necessary to add a comment to anything posted. Keep it up!
and it would indeed be a pity for us not to be able to continue to learn from you.
Sharon
Dom (Twisted Helix),
I appreciated your perspective, experience, and wisdom. I very much hope that you continue to post! The variety of people, experiences, knoweldge, and perspectives of the people on this Forum are what make this site so valuable, at least to me. Please do not stop posting.
Respectfully,
Brock
I appreciated your perspective, experience, and wisdom. I very much hope that you continue to post! The variety of people, experiences, knoweldge, and perspectives of the people on this Forum are what make this site so valuable, at least to me. Please do not stop posting.
Respectfully,
Brock
Shayk--of course I have respect for EVERYONE on this board! However, that is a two-way street. The decisions you make are what is right for you. Does that mean they have to be right for me? my daughter? I will continue to have a problem with anyone ridiculing another poster. This is simply not acceptable to me!
No one on this board would be remotely interested in anything alternative if there was a treatment that would stop this disease. In fact, if that were the case, this board wouldn't even exist! But we search for alternatives because what we are being offered is not acceptable.
I have NO PROBLEM with trying other things as long as they do no harm! In the end, the choice is not mine...it is my daughter's. And I will support and respect ANY decision she makes! This is, after all, HER disease and there is only so much I or her husband or her siblings, friends, etc., can do.
I think all of you who live with this disease need to put yourselves in our shoes just once. If you think it is easy for us to watch you suffer--in the prime of your lives--you are sadly mistaken. There is never a second, minute, hour, day that my daughter is not on my mind. We are very, very close. To her, I am the only one who understands. She is able to discuss everything with me about her disease and I have come to realize just how important this is to her. She is my best friend!
My feelings for my daugther extend far wider than "just her". I have those same feelings, concrerns and prayers for all of you and your loved ones.
No one on this board would be remotely interested in anything alternative if there was a treatment that would stop this disease. In fact, if that were the case, this board wouldn't even exist! But we search for alternatives because what we are being offered is not acceptable.
I have NO PROBLEM with trying other things as long as they do no harm! In the end, the choice is not mine...it is my daughter's. And I will support and respect ANY decision she makes! This is, after all, HER disease and there is only so much I or her husband or her siblings, friends, etc., can do.
I think all of you who live with this disease need to put yourselves in our shoes just once. If you think it is easy for us to watch you suffer--in the prime of your lives--you are sadly mistaken. There is never a second, minute, hour, day that my daughter is not on my mind. We are very, very close. To her, I am the only one who understands. She is able to discuss everything with me about her disease and I have come to realize just how important this is to her. She is my best friend!
My feelings for my daugther extend far wider than "just her". I have those same feelings, concrerns and prayers for all of you and your loved ones.
Chris55,
These are good points, but in my opinion, I think that having "cynicism with a spam filter" is a good thing. That is what separates "Sheeple" from intelligent human beings.
I still have suspicion when it comes to Dave (beatms). I mean look at his web link. He is a "consultant", perhaps trying to drum up "donations" for a grassroots LLC? How many others here at thisisms.com have an LLC to help others and disseminate information?????? Furthermore, Dave is marketing his theory on the cause of MS as being dietary/yeast based, there is no proof that this is the cause of MS. Don't you think he might have a potential Conflict of Interest?
My main point is that I don't think you or anyone else has the right to slap anyone on the hand for questioning a fellow poster (that is why this thread has exploded). That is what this forum is about. I think that it is important to expect a poster to backup what they are talking about, and also prove the authenticity of their posts (some how). I don't want to waste time reading BS posts that are designed to help make some one money (ie. potentially BEATMS).
My two cents.....
Brock
“The important thing is never to stop questioning.”
-Albert Einstein
These are good points, but in my opinion, I think that having "cynicism with a spam filter" is a good thing. That is what separates "Sheeple" from intelligent human beings.
I still have suspicion when it comes to Dave (beatms). I mean look at his web link. He is a "consultant", perhaps trying to drum up "donations" for a grassroots LLC? How many others here at thisisms.com have an LLC to help others and disseminate information?????? Furthermore, Dave is marketing his theory on the cause of MS as being dietary/yeast based, there is no proof that this is the cause of MS. Don't you think he might have a potential Conflict of Interest?
My main point is that I don't think you or anyone else has the right to slap anyone on the hand for questioning a fellow poster (that is why this thread has exploded). That is what this forum is about. I think that it is important to expect a poster to backup what they are talking about, and also prove the authenticity of their posts (some how). I don't want to waste time reading BS posts that are designed to help make some one money (ie. potentially BEATMS).
My two cents.....
Brock
“The important thing is never to stop questioning.”
-Albert Einstein
conflict
my feeling is, you can ignore the surface stuff and just look at the research. dave's old site, it took a long time to get through stuff i had no time for in order to just find some basic, and authentic, references. like i said, he's not popular and he's been kicked off a lot of boards but if you get through the surface, there is some science there. would i pay him for it? no. do i think yeast could have been his problem or part of it? certainly. do i think it applies to everyone? no. does he? maybe.
beat is not the only person i know who has gone ultra christian when facing illness. and he's not the only person out there pushing a single approach. but we're all smart here, we can sift through what ppl post and take away what applies to our individual situations. if you don't like what beat says, ignore, or criticize it, let him defend, that's what the forum is for. but we don't have to get on each other's case about it, that's what aaron is for.
beat is not the only person i know who has gone ultra christian when facing illness. and he's not the only person out there pushing a single approach. but we're all smart here, we can sift through what ppl post and take away what applies to our individual situations. if you don't like what beat says, ignore, or criticize it, let him defend, that's what the forum is for. but we don't have to get on each other's case about it, that's what aaron is for.
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syckbastid
- Family Member
- Posts: 89
- Joined: Wed Jan 03, 2007 3:00 pm
This might be a little off topic but, does anyone have change for a $20?
Stupid question, huh? I counter that it's also quite asinine to get so pissed off at someone/people that you'll never meet. Especially when debating a question that has no answer.
Seriously though, two 5's and a 10 would be great.
Stupid question, huh? I counter that it's also quite asinine to get so pissed off at someone/people that you'll never meet. Especially when debating a question that has no answer.
Seriously though, two 5's and a 10 would be great.
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syckbastid
- Family Member
- Posts: 89
- Joined: Wed Jan 03, 2007 3:00 pm
more on bowels
lol chris.
so i sent a form letter to my dad once when i was a kid. i hope he never reads this coz i'll be busted. i got an envelope and paper and made this fake local hospital letterhead and i typed (yep, typewriter days) up this form letter advising him of upcoming surgery to sever internal connections between his retina to his rectum, thereby correcting his shitty outlook on life.
so i sent a form letter to my dad once when i was a kid. i hope he never reads this coz i'll be busted. i got an envelope and paper and made this fake local hospital letterhead and i typed (yep, typewriter days) up this form letter advising him of upcoming surgery to sever internal connections between his retina to his rectum, thereby correcting his shitty outlook on life.
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Wonderfulworld
- Family Elder
- Posts: 776
- Joined: Sun Aug 27, 2006 2:00 pm
- Location: Ireland
- Contact:
only time will tell, can u stop the progression with what ever or will it continue like it has for over a hundred years.. I know i know the next 5 years look really good, it's a will see.. the more of a newbie you are i guess the better chance u have..Especially when debating a question that has no answer.
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TwistedHelix
- Family Elder
- Posts: 602
- Joined: Fri Mar 25, 2005 3:00 pm
- Location: Northamptonshire, England.
Hello everyone,
Thank you from the bottom of my heart for all your kind words, support and understanding... you have already made my birthday happier than it would otherwise have been and, although I might be a bitter old cynic, I can still tell good people when I meet them and all of you more than qualify for that title!
A thought struck me in the middle of the night last night which made me feel terribly guilty, and is something I must put right now. I suddenly realised that, if you are newly diagnosed with MS or are new to the site and you read my post, my description of my life could make you feel even more frightened and depressed about the future. Please, please don't take it like that -- what happened to me is very unlikely to happen to you -- first, even if you never received any therapy for the rest of your life, it's only a minority of us who get this bad so my present is not your future; second, check-in regularly at this website and you'll get a good, generally morale boosting, picture of all the acres of research and breakthroughs which are going on all the time, and the many promising new therapies which are just over the horizon... things which, hopefully, will slow the disease down and allow enough breathing space for the discovery of "The Big One" which will stop it in its tracks. Third, just because I haven't found a regimen, supplement or lifestyle that helps, doesn't mean that you should be discouraged from trying anything which you think might help -- my mum, step dad and I tried all sorts of things between us, but no one can try everything and you need to give things plenty of time before you can tell whether you think it's helping or not. As I said, if you feel better in any way, and for whatever reason, it's a good thing -- just keep your "Spam filter" on so that you can avoid the many charlatans out there who will sell you moon dust if they see an opportunity to exploit a vulnerable person who is in desperate need of hope.
To gwa -- thanks for confirming my suspicions about beatms. After I posted yesterday, I had the awful feeling that I'd got the wrong person and half-expected a lawsuit in the post this morning!
To becca -- I remember so vividly what it felt like when I had to get my first wheelchair: it's like a dark, unwelcome milestone has been reached in your life... "other people are in wheelchairs, aren't they? But me?... there must be some mistake!" The range of conflicting emotions goes round and round in your head: it's such a relief not to have to worry about whether you can make it round the supermarket any more, or to the next seat, but you'd absolutely love to be in a position where you can moan about your heavy shopping, or grumble about how you haven't sat down all day. You might just philosophically accept that it helps you to do some of the things you used to enjoy, or you might loathe it because of all that it represents; all the little things that everyone else takes for granted like reaching for something off-the-shelf, or being able to see across the store, or just doing things spontaneously instead of having to ask for help and plan everything like a military operation. You might want to plaster it with wacky stickers just because that's the type of person you are, or you might wrap tinsel round at a Christmas in a desperate attempt to prove to the world that "I'm normal, I'm still fun, you can still talk to me". You might really enjoy the fact that you will get the best parking spaces and the very best seat at concerts, shows and events, or you might hate the fact that you can't simply just get up and dance. You might really appreciate the kindness and consideration shown to you by strangers, or you might detest the unintended condescension of some of those around you. All of these things and many, many more may be in your head at any time; and it's all perfectly understandable -- you may laugh it off, as I used to do, and when you get home and are being transferred into your armchair by carers heave a heavy sigh and exclaim, "It's good to sit down!".
To Chris55 -- I truly hope that what I have said above will show you that I am not in the habit of ridiculing any idea that comes along. My hackles rise, however, when I see something like beat's original title for this thread which was something like, "God has shown me the cure for MS", and later changed, perhaps by the site administrators. To me, this comes perilously close to what I said before about raising the hopes of vulnerable, frightened people, (which includes all those family and friends of people with MS), and is not acceptable unless what you have to say is genuinely startling. I am sure that the subject of the thread has merit, but there was nothing revelatory in it. My original post was honestly just a little, little joke, but I apologise if it has offended you or anyone else. I must also apologise to everyone for hijacking this thread and taking it away from its original subject.
My original, "vow of silence", didn't last very long, did it? I couldn't let your kindness go unanswered, though, so maybe now we can turn our attention back to the real demon out there: this awful, shitty disease.
As the comedian Dave Allen used to say: "May your God go with you",
Dom.
EDIT: In my defence, I'd just like to make one more point which I'd forgotten about: in beat's original post which started this thread not only was the title completely different, but the link contained within it took you to a home page which made claims and statements unsubstantiated by fact. Some of us obviously saw this before it was changed and reacted accordingly, in an effort to dissuade unscrupulous posting. Those of you who did not see it perhaps saw our reaction as unreasonable.
Thank you from the bottom of my heart for all your kind words, support and understanding... you have already made my birthday happier than it would otherwise have been and, although I might be a bitter old cynic, I can still tell good people when I meet them and all of you more than qualify for that title!
A thought struck me in the middle of the night last night which made me feel terribly guilty, and is something I must put right now. I suddenly realised that, if you are newly diagnosed with MS or are new to the site and you read my post, my description of my life could make you feel even more frightened and depressed about the future. Please, please don't take it like that -- what happened to me is very unlikely to happen to you -- first, even if you never received any therapy for the rest of your life, it's only a minority of us who get this bad so my present is not your future; second, check-in regularly at this website and you'll get a good, generally morale boosting, picture of all the acres of research and breakthroughs which are going on all the time, and the many promising new therapies which are just over the horizon... things which, hopefully, will slow the disease down and allow enough breathing space for the discovery of "The Big One" which will stop it in its tracks. Third, just because I haven't found a regimen, supplement or lifestyle that helps, doesn't mean that you should be discouraged from trying anything which you think might help -- my mum, step dad and I tried all sorts of things between us, but no one can try everything and you need to give things plenty of time before you can tell whether you think it's helping or not. As I said, if you feel better in any way, and for whatever reason, it's a good thing -- just keep your "Spam filter" on so that you can avoid the many charlatans out there who will sell you moon dust if they see an opportunity to exploit a vulnerable person who is in desperate need of hope.
To gwa -- thanks for confirming my suspicions about beatms. After I posted yesterday, I had the awful feeling that I'd got the wrong person and half-expected a lawsuit in the post this morning!
To becca -- I remember so vividly what it felt like when I had to get my first wheelchair: it's like a dark, unwelcome milestone has been reached in your life... "other people are in wheelchairs, aren't they? But me?... there must be some mistake!" The range of conflicting emotions goes round and round in your head: it's such a relief not to have to worry about whether you can make it round the supermarket any more, or to the next seat, but you'd absolutely love to be in a position where you can moan about your heavy shopping, or grumble about how you haven't sat down all day. You might just philosophically accept that it helps you to do some of the things you used to enjoy, or you might loathe it because of all that it represents; all the little things that everyone else takes for granted like reaching for something off-the-shelf, or being able to see across the store, or just doing things spontaneously instead of having to ask for help and plan everything like a military operation. You might want to plaster it with wacky stickers just because that's the type of person you are, or you might wrap tinsel round at a Christmas in a desperate attempt to prove to the world that "I'm normal, I'm still fun, you can still talk to me". You might really enjoy the fact that you will get the best parking spaces and the very best seat at concerts, shows and events, or you might hate the fact that you can't simply just get up and dance. You might really appreciate the kindness and consideration shown to you by strangers, or you might detest the unintended condescension of some of those around you. All of these things and many, many more may be in your head at any time; and it's all perfectly understandable -- you may laugh it off, as I used to do, and when you get home and are being transferred into your armchair by carers heave a heavy sigh and exclaim, "It's good to sit down!".
To Chris55 -- I truly hope that what I have said above will show you that I am not in the habit of ridiculing any idea that comes along. My hackles rise, however, when I see something like beat's original title for this thread which was something like, "God has shown me the cure for MS", and later changed, perhaps by the site administrators. To me, this comes perilously close to what I said before about raising the hopes of vulnerable, frightened people, (which includes all those family and friends of people with MS), and is not acceptable unless what you have to say is genuinely startling. I am sure that the subject of the thread has merit, but there was nothing revelatory in it. My original post was honestly just a little, little joke, but I apologise if it has offended you or anyone else. I must also apologise to everyone for hijacking this thread and taking it away from its original subject.
My original, "vow of silence", didn't last very long, did it? I couldn't let your kindness go unanswered, though, so maybe now we can turn our attention back to the real demon out there: this awful, shitty disease.
As the comedian Dave Allen used to say: "May your God go with you",
Dom.
EDIT: In my defence, I'd just like to make one more point which I'd forgotten about: in beat's original post which started this thread not only was the title completely different, but the link contained within it took you to a home page which made claims and statements unsubstantiated by fact. Some of us obviously saw this before it was changed and reacted accordingly, in an effort to dissuade unscrupulous posting. Those of you who did not see it perhaps saw our reaction as unreasonable.
Last edited by TwistedHelix on Fri Jan 19, 2007 5:12 am, edited 1 time in total.