Mentor Teleconference - October 2017

Hi All: As I will not be able to join in the conference call on Wednesday, I asked Colleen if I could contribute some of my thoughts through a post, so here goes:

Hi, my name is Teresa, @hopeful33250, and my primary groups are Parkinson’s and Neuroendocrine Tumors (NETs).

What aspect of your personality or skill set do you feel adds the most value to Mayo Clinic Connect?
I feel that my curiosity, search for knowledge and persistence to find answers are strengths that I bring into my mentor position. I’m not afraid to talk to doctors when they are not clear or when I question their ideas. As a result, I have caught diagnoses when doctors did not think there was anything wrong. As a result, I seek out doctors who are willing to listen and work with me (I’ve dropped a few doctors along the way and developed some new medical relationships). I always encourage my group to seek 2nd opinions when they are in doubt. Encouraging others to be proactive is important to me.

My favorite pastimes are spending time with friends, family, music, movies and books. I’m also part of a Parkinson’s Dance Class – great fun! As far as music, I am a volunteer with Therapy Choirs of Michigan, http://www.therapychoirs.org, which helps people heal from traumatic brain injuries and neurological problems through music. Maybe at our next May meet-up meeting in Rochester a few of us can get together and sing at a Karaoke place! Wouldn’t that be fun?

As far as “creating the kitchen table talk” I try to maintain a list of the folks in my 2 groups (keep them in a word document) and when we have a new member, I post all of their user names (with the @ sign) and invite them to welcome the new member or perhaps share some of their experiences. Some members will do it, and some won’t, but I keep trying (persistence is the name of the game). I also look for articles from websites that I feel might be educational and helpful and I’ll post it as a “new discussion” and invite everyone to read and comment. That has worked beautifully in many cases.

I hope

Teresa, I'm so glad that you set the ball in motion here to get the teleconference discussions started before Wednesday. I invite others to share their thoughts on my questions above, especially those of you who cannot make the call: @johnbishop, @vdouglas and @llwortman.

Kitchen Table Talk
I like Teresa's example of kitchen table talk (https://connect.mayoclinic.org/discussion/things-to-monitor-what-to-tell-your-doctor/).
@mentioning everyone in your group works well for small burgeoning groups. However as groups get larger, this may no longer tenable. But you can @mention a subset of members. Inviting multiple people to discussions gives everyone the confidence (even lurkers) to contribute. It recognizes that everyone has something valuable to add. This also eliminates any one person being the sole person responding to every post.

I call this kitchen table talk. I often use analogies of in-person situations when referring to online communities. A large group sitting around the dining room table or kitchen table offers a great visual. Around a table everyone jumps into the fray. You might start a one-on-one conversation with the person next to you. Then someone across the table joins in, making it a 3-way conversation. Naturally as more people join in, you also listen and jump in only where and when you have something to contribute. The onus is not on you to respond to each person after they have spoken. That would be weird at a kitchen table wouldn't it? I look forward to discussion the inherent risks in that behavior and how to encourage healthy kitchen table talk.

What is working well in your groups?

My Contribution to the pre teleconference

1. Introduction Round Robin
My name is Rosemary Huckleberry, I live in central Kentucky. I follow Transplant Group and the Visiting Mayo Clinic Group. I also venture into other groups, that are within my experience/comfort level.-Kidney, autoimmune, PICS.
- aspects of personality/skill - I have been on the terrifying and complicated journey to organ failure. Liver failure caused kidney failure. I think that I understand the fear that exists behind the words in the written messages that are posted. I don't want them to feel alone. And I also try to be sensitive to the painful reality that not everyone will have success.
-my favorite past time/activity - I knit/crochet - I have started a Prayer Shawl group at my church. I enjoy the challenge of knitting a sweater. A spiritual joy for me is to be able to play my violin at mass on Sunday mornings (after putting it away for years). Working thru difficult pattern instructions, practicing difficult music passages, and working Sudoku puzzles are challenges that "I can" work thru - and I get a great sense of accomplishment. My favorite is being outdoors, and an annual hiking vacation.

2. Creating Table Talk - I am experiencing a 'hit and miss' with this. Sometimes questions get response. Tagging other members does seem to help. I also notice occasional 'likes' from silent members.
-What's working well - I have noticed 3 distinct categories members in transplant. 1) "Seekers" those with a specific question - get answer, and go silent. 2) "Supporters" - on/off participation, with a few terrific regulars. 3) "Seekers/Supporters" - looking for information and are supporting others at the same time.
I would welcome more of a supporting involvement by the caregivers and living donors.

And any technology is beyond me even knowing what to ask! I still am burdened with my 2-finger keyboarding! And this week, I just realized last week, that I can click on the Mayo shields at the you of page to access the Mayo information that I sometimes need. This may have been mentioned previously, but....

Rosemary

My Contribution to the pre teleconference

1. Introduction Round Robin
My name is Rosemary Huckleberry, I live in central Kentucky. I follow Transplant Group and the Visiting Mayo Clinic Group. I also venture into other groups, that are within my experience/comfort level.-Kidney, autoimmune, PICS.
- aspects of personality/skill - I have been on the terrifying and complicated journey to organ failure. Liver failure caused kidney failure. I think that I understand the fear that exists behind the words in the written messages that are posted. I don't want them to feel alone. And I also try to be sensitive to the painful reality that not everyone will have success.
-my favorite past time/activity - I knit/crochet - I have started a Prayer Shawl group at my church. I enjoy the challenge of knitting a sweater. A spiritual joy for me is to be able to play my violin at mass on Sunday mornings (after putting it away for years). Working thru difficult pattern instructions, practicing difficult music passages, and working Sudoku puzzles are challenges that "I can" work thru - and I get a great sense of accomplishment. My favorite is being outdoors, and an annual hiking vacation.

2. Creating Table Talk - I am experiencing a 'hit and miss' with this. Sometimes questions get response. Tagging other members does seem to help. I also notice occasional 'likes' from silent members.
-What's working well - I have noticed 3 distinct categories members in transplant. 1) "Seekers" those with a specific question - get answer, and go silent. 2) "Supporters" - on/off participation, with a few terrific regulars. 3) "Seekers/Supporters" - looking for information and are supporting others at the same time.
I would welcome more of a supporting involvement by the caregivers and living donors.

And any technology is beyond me even knowing what to ask! I still am burdened with my 2-finger keyboarding! And this week, I just realized last week, that I can click on the Mayo shields at the you of page to access the Mayo information that I sometimes need. This may have been mentioned previously, but....

Rosemary

Teresa, I'm so glad that you set the ball in motion here to get the teleconference discussions started before Wednesday. I invite others to share their thoughts on my questions above, especially those of you who cannot make the call: @johnbishop, @vdouglas and @llwortman.

Kitchen Table Talk
I like Teresa's example of kitchen table talk (https://connect.mayoclinic.org/discussion/things-to-monitor-what-to-tell-your-doctor/).
@mentioning everyone in your group works well for small burgeoning groups. However as groups get larger, this may no longer tenable. But you can @mention a subset of members. Inviting multiple people to discussions gives everyone the confidence (even lurkers) to contribute. It recognizes that everyone has something valuable to add. This also eliminates any one person being the sole person responding to every post.

I call this kitchen table talk. I often use analogies of in-person situations when referring to online communities. A large group sitting around the dining room table or kitchen table offers a great visual. Around a table everyone jumps into the fray. You might start a one-on-one conversation with the person next to you. Then someone across the table joins in, making it a 3-way conversation. Naturally as more people join in, you also listen and jump in only where and when you have something to contribute. The onus is not on you to respond to each person after they have spoken. That would be weird at a kitchen table wouldn't it? I look forward to discussion the inherent risks in that behavior and how to encourage healthy kitchen table talk.

What is working well in your groups?

Hi again,

Two hours ago a Member posted a question about how to talk with doctors during an appointment. I created the "kitchen table talk" by inviting everyone in the group to discuss what they do before an appointment. One reply has already posted. Take a look at it if you would like to see how it can work. https://connect.mayoclinic.org/discussion/things-to-monitor-what-to-tell-your-doctor/.

Teresa

Teresa, I'm so glad that you set the ball in motion here to get the teleconference discussions started before Wednesday. I invite others to share their thoughts on my questions above, especially those of you who cannot make the call: @johnbishop, @vdouglas and @llwortman.

Kitchen Table Talk
I like Teresa's example of kitchen table talk (https://connect.mayoclinic.org/discussion/things-to-monitor-what-to-tell-your-doctor/).
@mentioning everyone in your group works well for small burgeoning groups. However as groups get larger, this may no longer tenable. But you can @mention a subset of members. Inviting multiple people to discussions gives everyone the confidence (even lurkers) to contribute. It recognizes that everyone has something valuable to add. This also eliminates any one person being the sole person responding to every post.

I call this kitchen table talk. I often use analogies of in-person situations when referring to online communities. A large group sitting around the dining room table or kitchen table offers a great visual. Around a table everyone jumps into the fray. You might start a one-on-one conversation with the person next to you. Then someone across the table joins in, making it a 3-way conversation. Naturally as more people join in, you also listen and jump in only where and when you have something to contribute. The onus is not on you to respond to each person after they have spoken. That would be weird at a kitchen table wouldn't it? I look forward to discussion the inherent risks in that behavior and how to encourage healthy kitchen table talk.

What is working well in your groups?

Teresa, I'm so glad that you set the ball in motion here to get the teleconference discussions started before Wednesday. I invite others to share their thoughts on my questions above, especially those of you who cannot make the call: @johnbishop, @vdouglas and @llwortman.

Kitchen Table Talk
I like Teresa's example of kitchen table talk (https://connect.mayoclinic.org/discussion/things-to-monitor-what-to-tell-your-doctor/).
@mentioning everyone in your group works well for small burgeoning groups. However as groups get larger, this may no longer tenable. But you can @mention a subset of members. Inviting multiple people to discussions gives everyone the confidence (even lurkers) to contribute. It recognizes that everyone has something valuable to add. This also eliminates any one person being the sole person responding to every post.

I call this kitchen table talk. I often use analogies of in-person situations when referring to online communities. A large group sitting around the dining room table or kitchen table offers a great visual. Around a table everyone jumps into the fray. You might start a one-on-one conversation with the person next to you. Then someone across the table joins in, making it a 3-way conversation. Naturally as more people join in, you also listen and jump in only where and when you have something to contribute. The onus is not on you to respond to each person after they have spoken. That would be weird at a kitchen table wouldn't it? I look forward to discussion the inherent risks in that behavior and how to encourage healthy kitchen table talk.

What is working well in your groups?