Post by Amy Lombardi on Mar 30, 2009 10:47:30 GMT -5
Subject: invitation to speak
Name: Shannon
Date Posted: Sep 26, 08 - 4:59 AM
Email: Click here to Email
Message: I have been asked to speak to a class of nursing students next semester. I have not told them if I will or not. I don't know if I can. Next semester they do their pediatrics clinical and a portion of it is on childhood diseases. Has anyone else done this? I don't know what I would talk about.
Name: Nori
Date Posted: Sep 26, 08 - 7:14 AM
Email: Click here to Email
Message: I have spoken on several occasions to various types of groups from hospital staff to women's groups etc.
First ask what exactly it is that they want. I would guess that they want a talk about the impact of Batten's on families and how medical people can help instead of hinder. In that case, I would give a brief, but detailed description of the disease and then tell them what it is like for you and the rest of your family. Tell them what you need from medical people and what you don't need. Don't be frightened or worry about your delivery, it's just a group of ordinary people and they will be in awe of you because of your ability to "handle" what they can never imagine being able to handle themselves.
A little bit of emotion is okay, but try to keep it in check. I pretty much emotionaly "detach" when I'm speaking in public, but sometimes that's just not possible.
You will do great! Go for it!
Name: Nancy Peterson
Date Posted: Sep 26, 08 - 9:29 AM
Email: Click here to Email
Message: Ditto to Nori's message. There is no wrong way to do this. Whenever we get a chance to get the message out, it is a good thing. Every time I have spoken in front of a group I have come back with more than I gave. I agree with Nori, keep the bio part brief. If you get them too enmeshed in the horror of this disease, they can get off the purpose of the speech which is to inform about your families experience and need; what you do and do not need from the medical community and always emphasis what fabulous people our Batten kids are. I always tell that it may be one of those heart wrenching moments of their career, but it can also be one of their most memorable. Now that my son is gone, I have so many wonderful memories of the the lives he touched and changed. A good trick to control the emotions. On your notes, make a large green or red X. Whenever you feel the emotions taking over, look at the X. It moves your mind from the emotional right side of the brain, to the left side which doesn't process the emotions. All of our family used this at my son's service when we spoke. It really works.
You will be great. Go Shannon!
Nancy
Name: Tini
Date Posted: Sep 26, 08 - 12:13 PM
Message: Nancy, thanks for the X tip, I am going to try that!
Shannon, Good Luck, you will do fine!
Name: John Heuchan
Date Posted: Sep 30, 08 - 9:10 AM
Email: Click here to Email
Message: We actually had a close frind that did this for her nursing class in college. Tina and Nick went to be there for question and answer and to also put a face to the disease. Our thoughts are just getting it out there so people know.
Name: Shannon
Date Posted: Sep 26, 08 - 4:59 AM
Email: Click here to Email
Message: I have been asked to speak to a class of nursing students next semester. I have not told them if I will or not. I don't know if I can. Next semester they do their pediatrics clinical and a portion of it is on childhood diseases. Has anyone else done this? I don't know what I would talk about.
Name: Nori
Date Posted: Sep 26, 08 - 7:14 AM
Email: Click here to Email
Message: I have spoken on several occasions to various types of groups from hospital staff to women's groups etc.
First ask what exactly it is that they want. I would guess that they want a talk about the impact of Batten's on families and how medical people can help instead of hinder. In that case, I would give a brief, but detailed description of the disease and then tell them what it is like for you and the rest of your family. Tell them what you need from medical people and what you don't need. Don't be frightened or worry about your delivery, it's just a group of ordinary people and they will be in awe of you because of your ability to "handle" what they can never imagine being able to handle themselves.
A little bit of emotion is okay, but try to keep it in check. I pretty much emotionaly "detach" when I'm speaking in public, but sometimes that's just not possible.
You will do great! Go for it!
Name: Nancy Peterson
Date Posted: Sep 26, 08 - 9:29 AM
Email: Click here to Email
Message: Ditto to Nori's message. There is no wrong way to do this. Whenever we get a chance to get the message out, it is a good thing. Every time I have spoken in front of a group I have come back with more than I gave. I agree with Nori, keep the bio part brief. If you get them too enmeshed in the horror of this disease, they can get off the purpose of the speech which is to inform about your families experience and need; what you do and do not need from the medical community and always emphasis what fabulous people our Batten kids are. I always tell that it may be one of those heart wrenching moments of their career, but it can also be one of their most memorable. Now that my son is gone, I have so many wonderful memories of the the lives he touched and changed. A good trick to control the emotions. On your notes, make a large green or red X. Whenever you feel the emotions taking over, look at the X. It moves your mind from the emotional right side of the brain, to the left side which doesn't process the emotions. All of our family used this at my son's service when we spoke. It really works.
You will be great. Go Shannon!
Nancy
Name: Tini
Date Posted: Sep 26, 08 - 12:13 PM
Message: Nancy, thanks for the X tip, I am going to try that!
Shannon, Good Luck, you will do fine!
Name: John Heuchan
Date Posted: Sep 30, 08 - 9:10 AM
Email: Click here to Email
Message: We actually had a close frind that did this for her nursing class in college. Tina and Nick went to be there for question and answer and to also put a face to the disease. Our thoughts are just getting it out there so people know.