How long from twitching to weakness

[Jeliota]

Jeliota does seem to come off somewhat harsh and for some reason especially to me. Reading his previous posts I believe I read that he was suffering from hypochondria, yet is on here to straighten all of us out. I don't appreciate it and in know way was my post even remotely connected to any of his posts.

I appreciate shopathonic bringing this to the moderators attention because I have gone out of my way to tell Paul (Jeliota) that my posts aren't aimed toward him, since, for some reason, he doesn't like anyone adding their thoughts, research or education to a thread he has already straightened us out on. If we look hard enough, we will notice many very educated and long time members have stopped posting. These antagonizers are the reason why. This I know for fact, I have talked to them. Anyway, I only occasionally post, am very ill and actually have many things I would like to talk about, but haven't. I sure hope the forum goes back to the way it was several months ago so we can do that again. Thanks Al and Cindy for trying.

Cindy - I have had the same problem about weakness. The docs at first said I didn't have it because I could press their hand or push my leg to their arm. Now that I can't push those things very well, their story has changed and they say I am getting worse. If they knew me before the initial "push" they would have known I was getting worse then!

ltr...I haven't posted anything to you since the night of annmarie's diagnosis, and I deleted all of that. My question to you in this thread was honest.

I don't know. All I can do is read this and say, huh? I don't understand. I truly don't. I'm sorry that I'm obviously coming across very differently than I intended and that I've caused this level of animosity. I've already promised to try to do better. Do you want me just to say I'm leaving?

 

[Icanmanz]

Hi, ltr! Have you been diagnosed yet? Sorry for asking, it's kinda hard for me to try to keep up with everybody. My mind is still in sort of a fog, since it's almost 5 months since my son passed, and it is still laying heavy on my mind. With the holidays being so close, I am getting prepared to hurt all over again. These holidays are going to be the first ones without my son, and it is killing me already. God bless you folks, will be praying for everone on this forum. To the ones that have passed (quite a few) these past few days, may they rest in peace!

Irma

 

[ltr]

No. I don't want you to leave. My wish is for everyone to understand how the people here must feel, the fact that they're here alone. What if they have no one else and rely on the support from us and they get a post that simply pushes them away. I hate the thought of others suffering, even emotionally. And since you say your questions were honest, then, like I told Cindy, the docs thought my weakness was perceived because they didn't meet me when I was unbelievably strong. Now they can see the difference.

Irma - I think about you often and am so sorry for what you are going through. I hope you have plans to keep really busy throughout the holidays, doing good for others in your son's memory. I have been diagnosed, but with polymyositis. The problem is that I have twitching that is becoming localized and the docs are stumped by it because it is not usually a symptom of poly. I have recently developed atrophy of my right hand and my right ring finger is not working correctly. The cramps are so severe that I had to sit down while shopping yesterday, take off my shoe and sock and pull my twisted toes back to where they belong. I am really scared my diagnosis is going to change, but I am a little prepared for news like that. My next EMG is Thursday. Thanks for asking, it feels good to get that out!

 

[Icanmanz]

ltr, I read your last post, and it brought back memories, like when my son dropped by after work, and told me, "Mom, look at my hands. They are getting all messed up." I took a look at his hands, and my heart broke. I didn't want to cry in front of him. I told him I had to go to the bathroom. Once I closed the door behind me, I let it all out. My son lasted 15 mos after diagnosed, let me tell you I suffered terribly right along with him. I had to hold so much of it, because I did not want for him to see me cry. All I can tell you ltr, is that it is a long sad, sad story! I need to quit posting about it, because I am beginning to feel really bad. May God bless you, and I pray to God that everything turns out ok for you. Bless you!

Irma

 

[comfortable with ALS]

Hey Guys

I just have to say we are all very concerned especially the undiagnosed. I havent been spending 8 hours a day like i used to ive been spending time with my hubby and family and taking walks. leslie does have a lot of good info she does mean well,,,, i no i got mad but she was right what she said to me,, and i took it into consideration. People should be doing better when they get help from pals obviously it doesnt work for some of us... i admit iam stil scared but iam going to try to let it not ruin my life...thanks jenny

 

[Jeliota]

I just have to say we are all very concerned especially the undiagnosed. I havent been spending 8 hours a day like i used to ive been spending time with my hubby and family and taking walks. leslie does have a lot of good info she does mean well,,,, i no i got mad but she was right what she said to me,, and i took it into consideration. People should be doing better when they get help from pals obviously it doesnt work for some of us... i admit iam stil scared but iam going to try to let it not ruin my life...thanks jenny

I am glad to hear you are doing better!

 

[Blizna]

Thank you for your words, all of you. What Jeliota wrote is maybe aggresive, but I think its helpful. Some of us really need somebody to force them to dont let ALS-fear ruin their life.
I can say that after reading what he wrote I was a bit more calm. Maybe it sounds crazy, but its true. Some of us need to hear they are OK because we cant accept it.
However, Im twitching just 4 months so Im still scared, but after finding this forum it is so much better. And just due to support of you all.
I like how you care about members relationships and thats so nice on this forum.
I can say Im also trying to help - Scared of als could tell how we chated on the chat program I developed just for me and her.

This is the only forum that I have ever visited where Im feeling something. So much support and help, no matter if written in ironic or kind tone. I believe all people here have the best intentions to help each other and themselves too.

PS: Sorry for my spelling, grammar, I do my best.

 

[CindyM]

Hi belizna- I think there is a grain of truth to what you say. I have a friend who says her anxiety has gotten out of hand since her elderly husband passed. He used to provide a role for her in telling her when she needed to take a deep breath. I always get mad as heck when my family tells me to take a chill but when I look back, they were usually right. :-D

Leslie,

The docs at first said I didn't have it because I could press their hand or push my leg to their arm.

Good point. My doc at the clinic is weaker than I am. My local docs are large and muscular, so they of course find me "weak" I'll know it is time to worry if my slender little clinic guy suddenly gets stronger than me! lol.

Al- what can I say? You are always on spot. I agree we should lay off trying to correct another's attitude, since we none of us know each other face to face so it is really hard to know for sure how a post was intended. I think I said it before: if anyone truly annoys you, just click on their name and add them to your ignore list. After all, does it really matter who is "Right" or who is "wrong?"

 

[shopathonic]

Cindy--
I agree with much of what you say. In principle, there should be no need for posters here to monitor the tone of other posters. That's what the moderators are for. In my view, Jeliota's harsh, reproachful reply to Blizna should never have seen the light of day--it struck me as truly appalling and would not have been allowed on many other moderated groups--it came off as more of an attack on someone else's alleged shortcomings than an attempt to help. But that's just my opinion. One hopes, in view of the foregoing discussion, that this kind of thing will not happen again.

Jeff

 

[Jeliota]

Cindy--
I agree with much of what you say. In principle, there should be no need for posters here to monitor the tone of other posters. That's what the moderators are for. In my view, Jeliota's harsh, reproachful reply to Blizna should never have seen the light of day--it struck me as truly appalling and would not have been allowed on many other moderated groups--it came off as more of an attack on someone else's alleged shortcomings than an attempt to help. But that's just my opinion. One hopes, in view of the foregoing discussion, that this kind of thing will not happen again.

Jeff

I'm sorry, but you are keeping this up for reasons beyond my understanding. Blizna thanked me for my help, and yet you keep going. Actually, I think the moderators have done a nice job. No one has indicated that any of my posts were inappropriate.

Please don't destroy this forum with your hatred.

 

[shopathonic]

"I'm sorry, but you are keeping this up for reasons beyond my understanding," Jeliota wrote, precisely keeping it up himself--and to what end? To show contrition for his appalling assault on Blizna? To promise to adopt a more compassionate and warmer tone in the future? No . . . to strut and crow, in predictable fashion.

The purpose of this forum should be to provide support to PALs or potential PALs--not to attack them. Whether that elementary piece of human decency strikes you as putting anyone in their place based on their past behavior--that's between you and your conscience.

You said in an earlier post that you would try to "do better." One hopes that you mean this and are through trying to score points and to prove how smart and tart you can be.

Thanks,
Jeff

Jeff

 

[Jeliota]

"You said in an earlier post that you would try to "do better." One hopes that you mean this and are through trying to score points and to prove how smart and tart you can be."

I've sent you a PM. I'll no longer respond to you in the forum. This is my attempt to do better. There was nothing wrong with my post to Blizna, as he himself has said.

 

[shopathonic]

"Please don't destroy this forum with your hatred."

Moderators--how can you let such a horrific statement pass--accusing a fellow poster of "hatred" with no evidence to support such a nasty accusation, itself an obviously hateful and spiteful gesture? I thought that personal attacks were not to be allowed in this forum--yet we see in this thread a nasty assault on Blizna and now a gross verbal attack on me.

No one has ever lodged a complaint about any of my posts. Several people have taken exception to Jeliota's chronically snide tone toward others on this list--a tone that has now spilled into overt nastiness with this accusation of "hatred"--all because I pointed out his gratuitous asperity toward other posters, and in rather restrained language, at that.

If accusing another poster of "hatred," with no supporting evidence, does not elicit some action by the moderators, then what would?

I doubt that I have to make anymore points on this issue. Jeliota's last post has made my case more effectively than I ever could.

Thanks,

Jeff

 

[shopathonic]

Blizna is a sweet soul--God bless him for that. But two other posters took grievous offense to your callous reply to Blizna.

I hope that you will place the emotional needs of other posters on this list ahead of your own need to prove how erudite and superior you are. That kind of ego tripping is 100 percent at odds with the purpose of a support group and poisons the atmosphere of discourse out here, which should be based on warmth and compassion--no rampaging egos.

Whether or not your reply to me again is not important--it's the tone you adopt in replying to others that matters.


Jeff

 

[Al]

Ok. Both of you that is quite enough. This has gone on long enough. You've both made points. Drop it. You've totally gotten off track here.
AL.