Guest guest Posted June 18, 2002 Report Share Posted June 18, 2002 Hi, I think the issue everyone is talking about here is respect. Give it, take it. there are many educated people, some through life experience, some through formal training, some both. It takes all kinds. But there are cultural differences we may not understand but we can allow people to be who they are to feel comfortable doing so. Hey, I am an epidemiologist and I still use the other sides of my brain because I care to. There are the patients and there are caregivers. We all walk in different shoes. It is important to try to find value in each of us, here, or not if you choose. Some of us, like me, are alone and don't have someone speaking for us (luckily, I guess). Some of us, like me, are young and very dissapointed that we might get to aspire to our dreams - but somedays we say we still can. We each have different paths, different wisdoms, different fears. we are not homogenous and that should not be promoted. In the words of Lennon, " I get by with a little help from my friends... " Let's not have conditions on these friendships - let's try a litle harder. Who knows, maybe that growth will feel good. Many here have holes to fill where a great void has been left - let's try kkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 Sounds good to me! :>) > Hi, I think the issue everyone is talking about here is respect. > Give it, take it. there are many educated people, some through > life experience, some through formal training, some both. It > takes all kinds. But there are cultural differences we may not > understand but we can allow people to be who they are to feel > comfortable doing so. Hey, I am an epidemiologist and I still > use the other sides of my brain because I care to. There are the > patients and there are caregivers. We all walk in different shoes. > It is important to try to find value in each of us, here, or not if you > choose. Some of us, like me, are alone and don't have > someone speaking for us (luckily, I guess). Some of us, like > me, are young and very dissapointed that we might get to aspire > to our dreams - but somedays we say we still can. We each > have different paths, different wisdoms, different fears. we are > not homogenous and that should not be promoted. In the > words of Lennon, " I get by with a little help from my > friends... " Let's not have conditions on these friendships - let's > try a litle harder. Who knows, maybe that growth will feel good. > Many here have holes to fill where a great void has been left - > let's try kkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2002 Report Share Posted June 20, 2002 Greetings " katihaiku " , Sigh. I will make comment on some of the recent emails. Yours is well written but I fear misses the point. Unfortunately, more than respect, we must also demonstrate responsibility. I respect others on the group. But if the information they disseminate is hazardous to other patients, then responsibility overrides. Let me provide a couple of examples. Imagine if someone says keeping hydrated is bad for someone with MSA. Based on the underlying problems that could lead to very serious UTI infections. Infections are very bad for MSA patients. Responsibility says this must be refuted. Imagine if someone here said to ignore sleep problems, where the patient gasped for breath during the night. That can and does lead to death. Not a good idea. Responsibility says this must be refuted. Imagine if someone on this mailing list said to not worry about going to an emergency room if the temperature is only 99 degrees (Fahrenheit). Since most patients have decreased normal body temperatures, this is a bad idea. Responsibility says this must be refuted. Now, take it back to what both Bill and I continue to fight... Imagine if people hear the message that all neurologists are stupid, and find someone else. Yes, that's not what was said, but remember a new member to this list will have a hard time sorting out all the initial information. This type of tone is VERY bad for the patient. Responsibility says this must be refuted. Imagine if opiates are mentioned as a drug to help treat MSA symptoms. Unfortunately, MSA has typical symptoms that can make use of opiates very dangerous. Death is possible. Not a good possibility. Responsibility says this must be refuted. Imagine if someone recommends the use of uppers/downers for MSA patients, who already have problems with their biological systems. ANY type of stress, including uppers/downers only magnifies (dangerously so) the existing symptoms. Uppers/downers can impact (as do opiates) things as fundamental as heart function, breathing, dilation of blood vessels, and so forth. As a result, additional stress on already stressed systems is a very bad idea. Responsibility says this must be refuted. Responsibility is the course both Bill and I see as more important than " getting along " . I respect others. I don't care what others do to themselves. This is their choice. But if it is presented, irresponsibly, as an option for others, we must express our concern. Patients and Care Givers come here to find solutions to life and death issues. Responsibility in this venue is more important that social graces. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2002 Report Share Posted June 20, 2002 YES. BUT JUST REMEMBER WE AREN'T PHYSICIANS. ALL WE CAN DO IS SAY WHAT WORKS FOR US AS INDIVIDUALS. NOONE HAS TO TELL ME TO ASK MY PHYSICIAN. I AM EDUCATED. I LEARNED ABOUT LIABILITY IN COLLEGE AND GRAD. SCHOOL. IT INSULTS ME WHEN I HEAR NANCY MAKE SURE U ASK THE PHYSICIAN. I SEE THEM ENOUGH THAT I ASK. I KNOW SOME PATIENTS WON'T ASK. NANCY M. " B. Fisher " wrote: > > Greetings " katihaiku " , > > Sigh. I will make comment on some of the recent emails. Yours is well > written but I fear misses the point. > > Unfortunately, more than respect, we must also demonstrate > responsibility. I respect others on the group. But if the information > they disseminate is hazardous to other patients, then responsibility > overrides. > > Let me provide a couple of examples. > > Imagine if someone says keeping hydrated is bad for someone with MSA. > Based on the underlying problems that could lead to very serious UTI > infections. Infections are very bad for MSA patients. Responsibility > says this must be refuted. > > Imagine if someone here said to ignore sleep problems, where the patient > gasped for breath during the night. That can and does lead to death. > Not a good idea. Responsibility says this must be refuted. > > Imagine if someone on this mailing list said to not worry about going to > an emergency room if the temperature is only 99 degrees (Fahrenheit). > Since most patients have decreased normal body temperatures, this is a > bad idea. Responsibility says this must be refuted. > > Now, take it back to what both Bill and I continue to fight... > > Imagine if people hear the message that all neurologists are stupid, and > find someone else. Yes, that's not what was said, but remember a new > member to this list will have a hard time sorting out all the initial > information. This type of tone is VERY bad for the patient. > Responsibility says this must be refuted. > > Imagine if opiates are mentioned as a drug to help treat MSA symptoms. > Unfortunately, MSA has typical symptoms that can make use of opiates > very dangerous. Death is possible. Not a good possibility. > Responsibility says this must be refuted. > > Imagine if someone recommends the use of uppers/downers for MSA > patients, who already have problems with their biological systems. ANY > type of stress, including uppers/downers only magnifies (dangerously so) > the existing symptoms. Uppers/downers can impact (as do opiates) things > as fundamental as heart function, breathing, dilation of blood vessels, > and so forth. As a result, additional stress on already stressed > systems is a very bad idea. Responsibility says this must be refuted. > > Responsibility is the course both Bill and I see as more important than > " getting along " . I respect others. I don't care what others do to > themselves. This is their choice. But if it is presented, > irresponsibly, as an option for others, we must express our concern. > > Patients and Care Givers come here to find solutions to life and death > issues. Responsibility in this venue is more important that social > graces. > > Regards, > =jbf= > > B. Fisher > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2002 Report Share Posted June 20, 2002 : Well stated. And, as Pam said " awesome. " Responsibility trumps respect if those are the only choices. Respectfully responsible would work. Message: 3 Date: Thu, 20 Jun 2002 08:18:09 -0400 Subject: RE: respect Greetings " katihaiku " , Sigh. I will make comment on some of the recent emails. Yours is well written but I fear misses the point. Unfortunately, more than respect, we must also demonstrate responsibility. I respect others on the group. But if the information they disseminate is hazardous to other patients, then responsibility overrides. Let me provide a couple of examples. Imagine if someone says keeping hydrated is bad for someone with MSA. Based on the underlying problems that could lead to very serious UTI infections. Infections are very bad for MSA patients. Responsibility says this must be refuted. Imagine if someone here said to ignore sleep problems, where the patient gasped for breath during the night. That can and does lead to death. Not a good idea. Responsibility says this must be refuted. Imagine if someone on this mailing list said to not worry about going to an emergency room if the temperature is only 99 degrees (Fahrenheit). Since most patients have decreased normal body temperatures, this is a bad idea. Responsibility says this must be refuted. Now, take it back to what both Bill and I continue to fight... Imagine if people hear the message that all neurologists are stupid, and find someone else. Yes, that's not what was said, but remember a new member to this list will have a hard time sorting out all the initial information. This type of tone is VERY bad for the patient. Responsibility says this must be refuted. Imagine if opiates are mentioned as a drug to help treat MSA symptoms. Unfortunately, MSA has typical symptoms that can make use of opiates very dangerous. Death is possible. Not a good possibility. Responsibility says this must be refuted. Imagine if someone recommends the use of uppers/downers for MSA patients, who already have problems with their biological systems. ANY type of stress, including uppers/downers only magnifies (dangerously so) the existing symptoms. Uppers/downers can impact (as do opiates) things as fundamental as heart function, breathing, dilation of blood vessels, and so forth. As a result, additional stress on already stressed systems is a very bad idea. Responsibility says this must be refuted. Responsibility is the course both Bill and I see as more important than " getting along " . I respect others. I don't care what others do to themselves. This is their choice. But if it is presented, irresponsibly, as an option for others, we must express our concern. Patients and Care Givers come here to find solutions to life and death issues. Responsibility in this venue is more important that social graces. Regards, =jbf= B. Fisher Sennewald Charlottesville, Virginia Sennewald Charlottesville, Virginia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2002 Report Share Posted June 20, 2002 Hello, I believe I have been misunderstood. Of course, we should be responsable. But I was talking about respect. Thank you for the good examples. Look, I am in public health and responsability, social responsability, is what I do. So of course, I believe that is important. But again, I was talking about respect. Advice offers somebody the opportunity for choice, a better and perhaps smarter choice, but still a choice. Is there only one voice here? Everyone talks about the meds so i focus on my experience with alternative therapies- so as not to be redundent and to offer a broader base. That is smart. Perhaps, it might offer someone purely hope or it may offer relief. Look, I have many comorbid conditions so i am not eligible for the clinical trials. But I do have something to offer, and a lot of questions as well. A good teacher will say there are no stupid questions. A good class will be made up of a diverse group of anxious minds. this is basicly what i was trying to paint in an effort to unify where there has been riffs. Waverley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2002 Report Share Posted June 22, 2002 Waverly, Glad to have you here. I agree respect is also very important. God bless, Belinda > Hello, I believe I have been misunderstood. Of course, we > should be responsable. But I was talking about respect. Thank > you for the good examples. Look, I am in public health and > responsability, social responsability, is what I do. So of course, I > believe that is important. But again, I was talking about respect. > > Advice offers somebody the opportunity for choice, a better and > perhaps smarter choice, but still a choice. Is there only one > voice here? > > Everyone talks about the meds so i focus on my experience with > alternative therapies- so as not to be redundent and to offer a > broader base. That is smart. Perhaps, it might offer someone > purely hope or it may offer relief. Look, I have many comorbid > conditions so i am not eligible for the clinical trials. But I do have > something to offer, and a lot of questions as well. > > A good teacher will say there are no stupid questions. A good > class will be made up of a diverse group of anxious minds. > > > this is basicly what i was trying to paint in an effort to unify where > there has been riffs. > > Waverley Quote Link to comment Share on other sites More sharing options...
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