Part 2

Fast-forward to mid-August, and yet another of the weekly High Risk Clinic OB-GYN appointments with the County doctors and nurses to monitor her pregnancy, and they say 'we got Dr Steinberg's letter, and we will write you a prescription you can fill downstairs for the aspirin regimen.'

Huh?!

She requests and gets a copy of his letter and the prescription immediately, and discovers the following inaccurate statements made in it:
-Dr Steinberg did an extensive and thorough exam of her MM status.
-She is being seen regularly by his clinic.
-She suffers from regular severe headaches and takes Advil often.
-She has been on an aspirin regimen continuously.
-He has scheduled, and she has agreed to, an Angio the first week of November(!).
In the rest of the letter Dr Steinberg basically tells them that she is just fine, and that he wants her taking a baby aspirin once a day starting immediately!

OK, it seems wrong to me to prescribe a blood thinner to a woman only a month and a half from labor and blood loss, and my daughter feels the same way- but remember, these doctors know NOTHING about MM and are relying completely on Dr Steinberg for guidance here.

Laura DEMANDS that I immediately drive her to Stanford to retrieve her scans from them per the promise, and I do so.
But, NO, they refuse to even look for them, insist she needed to make an appointment, ask the nurses first, and get Dr Steinberg's sign-off before she can have them!
What!?
Listening to either logic or their own promises made is not on the agenda, and finally they VERY reluctantly call down to the nurses and one of them comes up to talk to Laura.
She tries very hard to tell her that no, they aren't saying the scans are lost, just that they have no idea where they are in the myriad locales and will have to hunt for them and call us back when they find them.
Recognizing that no way are we getting the scans today, I give her my cell and she agrees to call when they are hunted down.

Yes, they turned up two day's later, and we fetched them back.

The one bright spot in all this?
There is a CC at the end of Dr Steinberg's letter to VMC- to, of all people, Dr Micheal Edwards, Laura's surgeon at UCSF back in 1990!
We puzzle through the abbreviation after his name, and decide MAYBE it stands for Medical Clinic of Stanford University, and ask at the desk in the lobby if they have him listed- YES!
We hike the 400 miles to the far end of the new wing of the Children's Hospital, only to find out he is only in on Thursdays, and has JUST come on staff.

Laura and I stop in and see him later that week, and he concurs that Laura should NOT be taking the aspirin until after post-delivery recovery, and says a regular angio is insane and WAY too high risk, but that a newer scan that incorporates the features of an angio a CT and an MRI but is totally non-intrusive is the current tool, and he would love to see her and do the test and discuss the results with her afterwards.
Yay!
:D

He says she is way to far along now for the radiologists to be OK with doing a scan until after the baby, so we are stuck.
Oh well, at least we have a reason...

He says that Dr Steinberg had stopped him in the halls and told him about Laura's visit and expressed astonishment that she was so healthy appearing and had had no problems so far-
seems they have a still-running difference of opinion as to which is better: Direct or Indirect Bypass.

Dr Edwards is taking over juvenile surgeries at Stanford, and Steinberg is keeping the adult surgeries- but Edwards is seeing his juvenile patients for follow-ups even after they reach adulthood in his mini-clinic in the new Cancer wing.


So....
Just the facts, all the facts, and let the chips land where they may folks...

S

Dear S,

I'm sorry to hear that Laura's experience has been frustrating.  All of us are entitled to our own opinions, and I certainly won't start to place judgements here.  

I hope that things continue to improve, and will pray for her delivery to go well and that she has a healthy, happy  baby.  Please keep us posted.

Jill

Dear S.

I feel you...as I have experienced the same in other medical situations...with my B12 defiency...a friend HIGHLY recommended this endocrinologist...the best you could find...but my experience with him wasn't good. I won't go in details but had I not kept "at it" like you did...I would have died.  I still have nerve damage but thankful to be alive.
Then with Cara's MM...we were directed to one neurosurgeon who wasn't "concerned" about her situation....we were also directed to Barrows Institue for second opinion..they "wanted to see Cara"...never called us so we called and left msg...still no word.  I had read somewhere the Barrows was the best, most awesome for brain work.  Then I was deciding on which to go to Dr. Scott or Dr. Steinberg when a very close friend wanted me to go to Dr. Fredric Meyers at the Mayo in Rochester...her husband (who died of brain cancer) trained Dr. Meyers.   I decided to go that direction and glad I did...but I also read somewhere that people didn't have good experience at the Mayo.   I think your post is good for all to read because...it happens all the time even at the best place.  The best thing one can do...in my opinion is "keep at it" because you will be glad you did.   As I did just that for myself and am "VERY" glad I did.  Your daughter is "VERY" lucky to have you !!!!!  and so will your future grandchild...much luck and keep us posted....thank you for posting.

Warm Hugs,   CarasMOM

Thanks :)
Wasn't sure what the reception would be...
My last post just seemed to confuse people  :-/

I will post and let all know how the baby-producing business goes, and any and all relevant details if anything unusual comes up... sometime between now and a month from now- all up to the baby  ;;D

BTW, CarasMOM, your pic of your little one looks remarkably like Lsura did at that age- just Cara has a bit darker hair  :)

Best.
S

S,
     You are probably the first person I have heard of that has had a problem with DR. Steinberg and his office. I guess everyone is human and there is bound to be at least a few people that will have a bad experience with any Dr. at some point in they're career. Why did she go to Dr. Steinberg when she was unhappy with him to begin with, and not to Dr. Edwards who did the surgery. I personally would never go to any Dr. or neurosurgeon and not expect to pay, why did she not ask how much it would cost when she made the appointment knowing she had no coverage? I'm not real clear on the updating the chart after talking over the phone, no Dr's. office updates your files after talking to you on the phone or was that after he examined her, I'm a little confused about that. Anyway it stinks that you had such a bad experience, and my questions are not meant to be sarcastic. Maybe she should see someone else for any other follow up. When we went out for a follow up we waited a while in the office also but that seems to be in most Drs. offices, and you can tell by the clientele just from this website that he a very, very busy man. My personal opinion is someone that is as good at what he does and experienced at what he does as DR. Steinberg is to ME is worth waiting for. He saved my daughters life when other DR's. would have let her die. I understand were you're coming from. My daughter went to a doctor who was the head of the epilepsey foundation and the top notch most recemeded Dr. in the country and she was horrible and had horrible office manners and I ended up telling her off......and she misdiagnosed Mandy and as a result caused her a chance to prevent 4 major strokes which she will never probably 100% recover from. We all have our bad experiences in life especially with Drs. but I'm just sorry yours was with Dr. Steinberg because I think he is absolutely wonderful as a MM surgeon and as a MM specialist the best there is, again MY OWN OPINION. I wish you better luck in the future.
                        Nancy :)

Ok, so there's been one bad experience with Dr. Steinberg out of how many Moyamoya patients?  I don't think anyone will deny Dr. Steinberg is still considered one of the premier Moyamoya specialists in the country, will they?

For a website that provides information and support about a rare disease and lets people decide for themselves who to seek out for treatment, should we all post our "bad experiences" with the doctors we've come in contact with?

Why not stick to posting a recommendation for a doctor you've had a good experience with (like you did for Dr. Edwards), and discussing a non-recommendation for someone else, on a personal basis, when the subject arises?

My question is:  How does this information help someone who finds the site for the first time and is desperately looking for support and/or treatment?

-DJ

Wow! Happy to be a guy in this case.  You certainly have your hands full.  I wish the best of luck and I will be following your story to hear about the new arrival.  My wife, who has MM, had two children before being diagnosed.  That was before the bypass, but it would be nice to know any information you have and will find out on what the doctors instructing her to do as far as diet, exercise, and daily routines.  I think it would be helpful for others and help my wife if she chose to have another child or if any kind of Oops might happen.  ;;D

It is interesting to hear about DR. Edwards and his chose of surgeries.  DR. Martin at UCLA worked at UCSF for many years and also prefers the same surgery as DR. Edwards.  I am sure they worked together for many years at UCSF.  

Take care

Wayne

Wayne,
         That would be an excellent help. I know there have been people on here who are worried about having children and what to expect and watch out for, or wonder if they even want to have children. If your wife doesn't mind sharing that would be great! Thanks.
                     Nancy

I don't know if this information helps anyone, but I have two daughters and perfectly normal pregnancies before being diagnosed with MM.  I had two C-sections, which I have heard from several different places that it might be suspected that C-sections might be a contributing factor to MM.  I know that sounds crazy, but not only my neurologist, but some information that I have read also states that they are suspicious that multiple C-sections might have a link to MM.  Of course, I don't have any proof, but in my personal case, it could be true.  Just putting in my [smiley=twocents.gif]Laura

I think that this shows that these wonderful doctors are human and who knows why some of the time they seem uncaring and unconcerned.  I think it also reminds us to speak up!  If you are unhappy about something, or think a presciption or diagnosis is wrong, say something.  Keep pushing until someone takes notice.  Even the best are only as good as their patients.  Not to say your daughter or you did anything wrong, but you kept persuing the subject until you found another physcian and was able to consult with them.  I think all too often we think of these doctors as a god of sorts.  They are not.  I know that Dr. Scott was deeply hurt and confused when Arianna died.  He seemed very blunt and it was almost as if he didn't care.  Only later in a letter did I understand that this was his loss too.  He hurt, he wanted to make her better and couldn't.  I can't imagine having that on my mind, or having all of these people coming to you expecting you to make their life "normal".  
I hope all goes well with the baby and your daughter.  

DJ wrote on Sep 10^th, 2004 at 9:06am:

My question is:  How does this information help someone who finds the site for the first time and is desperately looking for support and/or treatment? -DJ

So, no one has any thoughts on my question???

Hey Dj,

That is a broad question, but I think it would help if the doctor’s name is left out of the story.  When a doctor’s name is listed, it could scare someone away who needs a specialist that can help them.  The fact that this doctor mentioned, asked the doctor that performed the surgery is actually a good thing.  He cared enough to remember this patient and ask questioned which shows he is not arrogant and has the patient in mind.

As for help, this post will help someone who is seeking help for a loved one with MM. It will teach them to be persistent to ask and seek help for that loved one.  

As far as a patient that has MM, who first comes to this site and is desperately looking for help,   this is not the post they should see first.  I think if the person with MM is strong enough to go on and read other post, they will be fine.  (That is if the doctor’s name is not posted).  

On another note, I believe that the person who posted his story did not intend to do any harm and could also be looking for some reassurances of his own findings to help his daughter.  I believe it might be in the best interest of first time users, for the poster to remove the names of the doctors using the modification function.  I also believe that the poster has helped in ways of persistency as well as help for those who are having children with MM.  

Hey, I had go back and modify a post or two in the best interest of those first time users.  I also agree with you Dj about speaking to a person directly, away from the public area if any doctor's names are given.  

Let's not be so hard on the poster, because that may discourage that person from future post.  This poster has a lot of information that will help all of us.  He has a daughter who has a bypass from 14 years ago and is having a wonderful baby.  I want him to stay and help us all.

Just my own thoughts on the subject.

Thanks

Wayne

mpressions wrote on Sep 12^th, 2004 at 12:44am:

Let's not be so hard on the poster, because that may discourage that person from future post.

I can’t find one single word where anyone was hard on the poster Wayne. I think DJ’s question and point he is making is a valid one. Where does that information help someone? This being a support and information network, where do the issues he mentions in detail help anyone other then to purhaps harm this support and information system for one of the best and few mm specialist in the country, who has saved the lives of countless people? DJ’s and our soul purpose here is to help others and we’re here for that and need to keep that as our goal, not to try an harm anyone’s character or be hard on anyone. We all have had our issues dealing with this rare disease, but our goal here is to help others and I think keeping that in check is all DJ's question is hoping to do. That’s how I see it.

Mar

I, too am sorry that someone had a bad experience with
Dr. Steinberg's office.  I personally had a great experience, and am totally confident with his expert knowledge and care of my health.  To be honest, since he is in such demand,I often pray that God keeps him in his care and gives him good health and strength, so he can continue helping others well into the future.  I also agree that having a doctor's name on a topic in a negative way that has helped so many, isn't productive to new people looking for some positive and beneficial information- like I was doing a year ago.  I feel thankful to DJ and this site, because that was how I learned nore about MM, and how I sought out a 2nd opinion from Dr. Steinberg, and why I feel great and positive about my future a year after a not-so-great experience with my 1st doctor.  I hope Laura has a successful delivery, and that all works out well for her, and I wish her experience had been more positive, too!  
Just my thought!   :)  Tricia

Hi Mar,

I did not mean DJ or anyones current post, it was more geared to furture post.  It was a little late at night and could have been more specific.  The questioned asked by DJ is in regards to a specific persons post and there will be post that would follow that will be positive and negative.  My point was to convey my thoughts and only my thoughts on what we should also consider when responding to DJ question, so the poster will not be discouarged.  You are right that is not the main reason that this site is here for, but I just think there has to be a medium somewhere. I felt bad about the comment I made in the beginning of the post.  It is sort of like when you are in school and you answer a teachers question in class (we all have had this experience in our life).  If the answer is wrong, the teacher will say, can anyone give me an answer on why we should not do what Jonny said?  Then response after response makes you sink deeper and deeper in your chair.  I know, we are all adults now, but I still feel bad.  Hey did someone just call me a wimp?  ;;D Anyway I am not being fair now. I am pulling people away from Dj,s question, who deserves to have it answered.

Thanks

Wayne

on 10.09.2004 at 09:06:08, DJ wrote:My question is:  How does this information help someone who finds the site for the first time and is desperately looking for support and/or treatment?

-DJ  


So, no one has any thoughts on my question???

Hi DJ:  Well I think your question needs several levels of answers..no such simple answer without thinking it throughly, and word it correctly....so that's what I've been thinking since your post appeared. Without making this post too long this is my feedback at the moment.   ::)  You made a point..someone new that never has seen this website might \make a decision on that doctor based on that post unless they are smart enough to continue to read through all the back posts to see that for that doctor 99% were happy with him and 1% wasn't...shows he is a very good doctor to consider but they are warned in advance what to do should they come to the same roadblock as they did.   But sharing an experience especially when the disorder is a RARE one... The best MM specialists are FAR and FEW is bound to have some difficulty but that post shows...continuous persist from all angles will get you "somewhere"...also gives me the impression "never give up".  I saw it differently because as a deaf person....I always have to do that.  There was one post in the guestbook that said they didn't go to the Mayo because the chance of having a stroke after surgery was higher there...then I saw another post that someone had surgery there without any problems. So in my case I really didn't have much to compare...I had to trust my instincts....the risk was 5% that Cara would have a stroke after the surgery..and she "did" have one...but the MORE I read, researched and compared...it goes with the MM territory.  No doctor has a crystal ball to predict what happens but their experience with MM does make a difference.  And ones choice of doctor should not be based on one post.  When my husband saw the video on the homepage of this website...he said oh that is a good video for us to show our family and friends and then he asked me why didn't we consider dr. steinberg....as he does give a good expression in the video, explains it well (its not closed caption so I have no idea what he said but I have read enough to guess what he'd be saying). I still feel I haven't answered your question completely and feel I may be swaying away from it.  This is the third post I started...the other two didn't sound right so I deleted them.  This one is little better but still may not be what you were looking for.   But you are looking from an administrators point of view making sure that all information isn't one-sided, on the track...and comforting, helpful for all concerned.  As always we ALL are VERY grateful for  you, DJ..for this website...  [smiley=bow.gif] [smiley=bow.gif] [smiley=bow.gif] [smiley=bow.gif]

Warm hugs,  carasMOM

DJ,
I find this post helpful to me. I had thought I was being too sensitive about the bedside manner of Dr. Steinberg, but now I know Tyler wasn't the only one treated coldly.
I have to say Tyler did have a good experience with such a horrible thing. However, in comparing my experience with what others have posted on their experience with Dr. Steinberg, mine wasn't as good. I know Dr. Steinberg did an excellent job helping Tyler, but I feel he treats his patients differently depending on income.
So, to answer your question: This post lets people know that Dr. Steinberg isn't as perfect as he sounds. He is a good doctor, but he might treat some patients more coldly than others. This post shows the extreme end of his cold treatment, but there are other levels of cold treatment that some of his patients might experience.
Because of my income level I am used to treatment like this from doctors, so I'm not saying Dr. Steinberg is any worse than any other doctor out there. However, all other post made me expect a bit better from him, I now know patient treatment boils down to income level no matter how good the doctor is.
Just my 2 cents. I really had tried to stay out of this, but I was hurt by how sdl was being treated for posting their experience, since it didn't fit with what everyone else on here has experienced.
Rena

Dr. Steinberg, Dr. Scott, Dr. Connolly, Dr. Oglvy, Dr. Martin, Dr. Edwards, Dr. Ellenbogen, Dr. Nussbaum, Dr. Thompson, Dr. Barrow, Dr. Dauser, Dr. Joe Blow.... (any of the other Dr's who've treated MM'ers).

I wasn't questioning the post simply because it was about Dr. Steinberg (I would hope to think ya'll see me as being a little more un-biased than that).

My point is... does detailed patient/physician information such as that about any doctor belong on the board?  What good does it do for someone looking for support?  Wouldn't it better serve our family if it were handled on a personal/case-by-case basis instead of having all of the info thrown out there for everyone to read when they first find the site?

-DJ

yes I think it should be out there because I am amazed at how many people "view" the posts versus how many "reply".   Many people would have trouble voicing that kind of post and I am sure they probably wondering they are the only one having a bad experience since all the posts have praised different doctors but none explain bad experiences...so therefore might be difficult to know if your "bad experience" with one doctor ...send to them personally...maybe not be what they need to hear....but seeing several posts that had bad experience would make people more open....and maybe request bad experiences personally further in detail if needed.

Have a great day,

carasMOM

Ok, if that's the case...

I personally had a HORRIBLE experience with Dr. Meyer and his staff at the Mayo Clinic.  His name was one of the names I was given when I was first diagnosed.  I contacted his office via the telephone to see if they could do anything for me and they basically told me to "take a hike".  I got the "take two aspirin and call us in the morning" routine.  Everyone I spoke to was rude and I wouldn't recommend them to anyone (true story by the way).

If you would have seen this post before you decided to take Cara to Dr. Meyer (who quite possibly saved her life), would it have swayed your decision to choose another doctor?

Would you want someone operating on your daughter's brain who other people have had "bad experiences" with, would you?

It's time to think "outside the box" here people.......

Think about what you were looking for when you first found this site...

-DJ

Hi DJ. I am so glad you posted that about Dr. Meyer !!!  Brings up the point...would you have personally emailed me about your bad experience when you saw I was thinking of using him?  I hadn't heard from you in the beginning of my postings but figured you were busy but now I know.  ;)   It wouldn't have swayed me because our experience with him in June was very good in fact better than most of my horrible doctor experiences for myself.  And I am sorry you had that experience.   Thinking about that post....sdl probably felt so overwhelmed with all the things going wrong, and to be treated differently by that doctor when everyone else got better treatment that she had to get it out without thinking whether thats the type of post that should be there...but she did say...it may cause some to go on the defensive side....those things always do.  I wonder...if you had a post about problems with doctors.... we would find that every doctor on the good list may also be on the problem list...and yes making a first timer more confused and their decision to go with a certain one more difficult but then that is something they can "ask"..."how are you in patient relations?" (difficult to ask...yes...but sometimes it shows doctors that people will find out that they may treat one patient better than the other...especially on moyamoya.com.  We are not out to harm them but to continue to make them more human, too.

Thanks DJ.  

carasMOM

As I said before, I can't see where anyone was treated badly, but rather asking and hoping they see the bigger picture about helping others that come looking for life saving help and information. It saddens me so to think anyone would even think this is personal with you or any of us, rather than the constant goal of helping others.

Quite frankly, it makes me sick.

Mar

I don't think asked how is your patient relations of any Dr. they'll say I suck I treat people like crap, I'm sure they all think they are good with the patients. Getting an honest answer on that is not gonna happen. ANY NEGATIVE POST about ANY DR. to answer a question is not gonna help ANYONE coming to this site for help. Like they say if you can't say something nice don't say anything at all. If they want to know what people think about a Dr. go to the link where people can post they're experience. This page is to HELP PEOPLE OUT.
                         Nancy

wrote on Sep 13^th, 2004 at 12:33pm:

As I said before, I can't see where anyone was treated badly, but rather asking and hoping they see the bigger picture about helping others that come looking for life saving help and information. It saddens me so to think anyone would even think this is personal with you or any of us, rather than the constant goal of helping others.

I have to agree with Mar.  Chances are, if you would have seen "bad things" about Dr. Meyer on this message board before you decided to take Cara to the Mayo Clinic, you might have decided not to go there and would have looked for another option... one that might not have been so feasabile for your situation.  Bottom like is Dr. Meyer was the right answer for your situation.  He quite possibly saved your daughter's life!

I would hope this site is more about supporting people to find the right physician for their situation more than pushing one doctor or the other...

Just my thoughts?

-DJ

I'm all for supporting anyone for making the best choice for their situation and apologize for going off the track which was not my intention..sorry.

thanks,  carasMOM

DJ wrote on Sep 13^th, 2004 at 1:29pm:

I would hope this site is more about supporting people to find the right physician for their situation more than pushing one doctor or the other...

Ok - I have to add my thoughts....

When I came to this board my intentions were to find (in no particular order) 1) other people who were diagnosed with MM, 2) Opinions and actions that other people had taken, 3) Support and 4) Information.

Yes, this site is a great place to go for support.  But it is also a place to go for information.  I didn't want to hear just the good stuff...I wanted to hear all of it - what to expect - the good things and the stuff that is hard to hear.  I wanted to hear about the good doctors and the bad doctors....but it never took away the right to make my own opinions or choices.  As DJ said in another post - "Information is power"  The more information you have the better you are prepared to make the right decisions.
Just my  [smiley=twocents.gif].

-Shari

I couldn’t agree with you more Shari, they are the same exact intentions I had when coming to this website, and yes we can make our own decisions, BUT... you are a long time member, you have to know for a fact that many come on here and DO NOT do the research that you and I have done. Yes DJ said, "knowledge is power" BUT… c’mon, what do you think DJ meant by his comments in his posts, honestly? I feel everyone is still NOT seeing DJ’s point. He is the Webmaster and has to oversee all that is said and done here in the best interest of future mmer’s who may not do the research that is needed and his point was, (IMO) NOT to forget what new mmer’s (searching as we did) want and need, and knocking any MM doctor, unnecessarily or trivially could harm a decision someone has to make. He just wanted us to see the bigger picture, BUT…instead, many turned it around. Shame on the several who implied that his comments were personal because it was Dr Steinberg or stated the original poster’ was treated badly, when he was NOT!! (Show me where??) DJ has ALWAYS had the best intentions for fellow mmer’s and this website and at NO time wavered from that, yet he got a slap in the face to imply otherwise, with NO respect for him or his opinion. Yes he has stated knowledge is power, PLEASE give him the credit he deserves for knowing the good and the bad of any doctor, and making our own decisions, that's common sense. He’s been there done that, but only wants to keep us knuckleheads on the right tract for the good of the website. I know for a fact he has saved many lives here and directed us faithfully to the few mm specialist that can handle our cases when others could not and to take it in another direction as many have done, saddens me.

Mar

There seem to be a couple of lessons we can all take from this thread.  First, there are times that HOW we say something is just as important as WHAT we say.  Nearly all of us here are under stress from the experiences related to this strange illness which connects us.  As such, we may tend to read things into what others say and should try to guard against this very human failing.   ;)
Secondly, and more importantly, KNOWLEDGE IS POWER!  It is up to each of us, individually, to learn as much as we can about our own or our family member's illness and how it will affect every aspect of our lives.  I am blessed because my wife is a PICU nurse and we have cared for the seriously medically needy for the past six years in our home.  We have cared for 3 children who weighed under one pound at birth.  We have cared for 9 children who were three pounds or less.  One a daily basis, we have had equipment like oxygen concentrators, feeding pumps, even ventilators in our home.  With each new child's multiple diagnoses, we have had to educate ourselves on their medical needs while remembering to treat the child, not the disease processes they are experiencing.

Because of our experiences, when Sean was diagnosed with MM, we immediately knew where and how to search for the best, most reliable information.  (As I said, we are blessed.)  We knew how to sort through the myriad sources to discern which ones to trust and which ones to ignore.

Most of all, when we found DJ's links page and located the specialists, we knew that we had two very good choices to explore.  In our first email to Dr. Scott, we asked for a referral to someone who had performed at least 50 of these corrective surgeries.  Dr. Scott actually suggested that we might want to speak with Dr. Steinberg before deciding where to have Sean treated.  

We would feel quite comfortable with what we have learned about either of these men taking care of our son.  

It is my hope that any newbies who don't have the resources/experience that we do will not be deterred by any of the negative comments that have been aired here ... indeed, I would hope and pray that they would continue to learn as much as possible and find the best way to have their own loved one (or themselves) cared for during this difficult time.

Mar - I was only giving my opinion.  Take with it what you want.  I can't force people to do the research - I can only advise and give my opinion.

newmmdad - Thank you for your post.

I have the highest respect for DJ, and I don't want anyone to think otherwise.  I think newmmdad is right in saying that we need to be careful about HOW we say things.  It's very easy to get lost in the tone of our messages.  I personally advise people to read as much as they can on this board - to get as much information as they can - when new memebers join this family.

Again - just my opinion....

-Shari    

newmmdad wrote on Sep 14^th, 2004 at 12:42am:

There seem to be a couple of lessons we can all take from this thread.  First, there are times that HOW we say something is just as important as WHAT we say.  Nearly all of us here are under stress from the experiences related to this strange illness which connects us.  As such, we may tend to read things into what others say and should try to guard against this very human failing.   ;)

Thank you for your comments Steve!

It is said that 85% of the communication process is comprised of non-verbal communication.  Unfortunately, with a message board such as this, people can only read the words you type and miss out on that invaluable 85%.  You can't "read" a person's facial expressions, feelings, hand gestures, tone of voice, posture, or anything else in their typed words.  You only get the basic 15% of what they intend their message to be... the words.

I would bet about 85% of the messages on this board are misconstrued or "read into" by the reader because the author of the message wasn't able to completely convey how they could TYPE, exactly what they wanted to SAY.

Just remember... when you read a message on this board, you are only getting 15% of what the author intended to communicate to you.  Don't take everything so literally all the time!

-DJ

BTW, don't worry about me getting my feelings hurt by a post.  I'm pretty good about taking posts for the words, and not "reading emotions into them".  If someone gets me rialed up, I'll be sure to let them know.

;)

Dj and Newmmday,

You guys are awesome.

You are the two most well centered people I have ever seen.  Your posts make me feel the true compassion that makes us a family.

Thank you from the bottom of my heart.


Wayne

DJ wrote on Sep 15^th, 2004 at 12:22pm:

It is said that 85% of the communication process is comprised of non-verbal communication.  Unfortunately, with a message board such as this, people can only read the words you type and miss out on that invaluable 85%.  You can't "read" a person's facial expressions, feelings, hand gestures, tone of voice, posture, or anything else in their typed words.  You only get the basic 15% of what they intend their message to be... the words. I would bet about 85% of the messages on this board are misconstrued or "read into" by the reader because the author of the message wasn't able to completely convey how they could TYPE, exactly what they wanted to SAY. Just remember... when you read a message on this board, you are only getting 15% of what the author intended to communicate to you.  Don't take everything so literally all the time!

Why do you think I hardly ever come here any more?

1. I don't have the time, between working full-time and raising my 8-month old son.

2. I felt that no one ever understood anything I said, and I got attacked when people misunderstood my posts because they read into things incorrectly.

3. My loved one with MM felt unwelcome here, and eventually I did too.

Hi, everyone. Diane, I am so sorry that you and your sister ever felt unwelcome. For someone to feel unwelcome on a site that is supposed to be here for support is very sad indeed. As for all of this DR/ bad experience stuff goes, I think everyone has very valid points, but in the end, I think it should be up to DJ as webmaster to determine what should and should not be posted in the public boards, yet it is very respectible that he would ask the opinions of the rest of us as he did. And it is also MY OPINION that all of us should be able to voice our opinions as adults without becoming frustrated and cross and making people feel unwelcome or that they cannot speak their mind. Please just remember that this is a loving, support community and that we are supposed to be here for each other. [smiley=twocents.gif] Nikki