Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I have been concerned with the frequency of members having difficulty with being diagnosed and not receiving proper care. This is especially concerning with the number of ER visits and hospitalizations recently.
Having a neurologist who has expertise and experience with MG makes a big difference. Some members have been fortunate to find that doctor on their own or though this group.
I believe with everyones input we can make an effort to find a solution for our members and especially our new members. One idea would be to create a data base of MDs and facilities who our members would recommend.
The survey would be confidential and members would only be identified if they choose to be and then by DS user name. Im sure there will many questions which can hopefully be addressed to everyones satisfaction.
The more I thought about the survey I see no reason just to ask one question. Why wouldnt we create something that would provide a wide range of information?
Examples of information that could be provided as a result of the survey;
Recommended MDs
Follow up on Rosies suggestion..have option of individuals volunteering to be mentors for other members
DS list our membership over 1,000. DS does not remove members unless they request to be removed. All members will be encouraged to participate in survey. Gather a wide range of demographics of our members.
Seek information on suggestions on how to improve upon our DS support group
Do you like the idea of a survey and would you participate? Listed above are a few ideas, I would love to get your suggestions.
I have done similar surveys. This survey could be done using one of the various free survey tools available online. I am not an expert in doing surveys and would welcome anyone who does have expertise creating surveys and compiling results to help or take the lead.
The survey results would be published and kept current. New MG members would be invited to participate.
Im aware MGFA did a survey last year. Does anyone know if MGFA give a presentation on the survey at the conference this year?
One of the strongest positives about our group is the desire to support each other. I believe the survey will be a way to take that support to another level.
Bruce
Having a neurologist who has expertise and experience with MG makes a big difference. Some members have been fortunate to find that doctor on their own or though this group.
I believe with everyones input we can make an effort to find a solution for our members and especially our new members. One idea would be to create a data base of MDs and facilities who our members would recommend.
The survey would be confidential and members would only be identified if they choose to be and then by DS user name. Im sure there will many questions which can hopefully be addressed to everyones satisfaction.
The more I thought about the survey I see no reason just to ask one question. Why wouldnt we create something that would provide a wide range of information?
Examples of information that could be provided as a result of the survey;
Recommended MDs
Follow up on Rosies suggestion..have option of individuals volunteering to be mentors for other members
DS list our membership over 1,000. DS does not remove members unless they request to be removed. All members will be encouraged to participate in survey. Gather a wide range of demographics of our members.
Seek information on suggestions on how to improve upon our DS support group
Do you like the idea of a survey and would you participate? Listed above are a few ideas, I would love to get your suggestions.
I have done similar surveys. This survey could be done using one of the various free survey tools available online. I am not an expert in doing surveys and would welcome anyone who does have expertise creating surveys and compiling results to help or take the lead.
The survey results would be published and kept current. New MG members would be invited to participate.
Im aware MGFA did a survey last year. Does anyone know if MGFA give a presentation on the survey at the conference this year?
One of the strongest positives about our group is the desire to support each other. I believe the survey will be a way to take that support to another level.
Bruce
Ann
Will
--Kerry
Rosie
I am in favor of whatever help we can give each other, but codifying that help brings up liability issues for the people involved and perhaps the site.
You know that basically, unlike Will, I hate forms, although I do like charts, and filling in the numbers gives me the creeps, but all that aside what happens if things go wrong with the hospital or doctor or mentor? Where could we keep such a thing so it would be both accessible and safe? Who would keep it current (that person would bear the brunt of the liability, I suppose)?
I also hate having to consider liability issues when it interferes with care, but I am afraid unless there is some exception for this kind of thing that crosses state lines, it will be a problem for us. It is one thing to say, as we have, I like Dr. So and so and another to say that he is on the group's good list. We could run it by our lawyers , but. . .
This may be one of those occasions in which attentive disorganization serves us best. b.
Rosie
Rosie... calling it a day!
I have had to deal with business liability issues my entire career.
The questions do have to be asked and addressed. If we cannot answer those questions to everyones satisfaction, we may not be able to proceed. I am optimistic and will do my best to address this important question.
Your question will need to be addressed with DS. On the DS site Why we do it they list the following Recommendations: Members list everything from recommended doctors to great restaurants for kids, with attached reviews. We would also attach the hold harmless clause that most everyone uses, i.e. DS and MGFA. I would also use Angies List as another group that post reviews and recommendations concerning doctors.
I realize many people do not like surveys. The survey questions and types of responses will be constructed in a manner to hopefully address that concern.
If we do the survey a draft would be prepared for further input and refinements.
Thank you for your input.
Bruce
I would like to take a look at what you might have. You have great ideas. Thanks for you help.
You can count on the group when more input is needed.
TJ
Those things sound promising. I think I could probably handle one form. A lot of my antipathy is left over from school and those slanted political forms sent out by the party not of my choice. My last marginal comments got me removed from the mailing list.
If they have already solved the liability issues for the site, then that is very reassuring.
Go, Bruce. b.