Capital Area Ehlers-Danlos Syndrome Support Group Meetings
Capital Area Ehlers-Danlos Syndrome
Support Group
April 23, 2024
977 3000 8955
Passcode is:
476291
To register, click the URL below. You will be sent to a registration form. Please fill it in. You will then be sent a confirmation email. You will need the passcode sent in the registration confirmation email to join the meeting (this is the same passcode as listed above).
https://umich.zoom.us/w/97730008955
I hope to see you at the next meeting!
March 17, 2024
977 3000 8955
Passcode is:
476291
To register, click the URL below. You will be sent to a registration form. Please fill it in. You will then be sent a confirmation email. You will need the passcode sent in the registration confirmation email to join the meeting (this is the same passcode as listed above).
https://umich.zoom.us/w/97730008955
I hope to see you at the next meeting!
Hugs,
February 28, 2024
The next meeting of the Capital Area Ehlers-Danlos Syndrome Support Group will be on Tuesday, March 12, 2024, at 7:00-9:00 pm, via Zoom, a free web conferencing application. Join us for sharing and support!
The Zoom meeting ID is: 977 3000 8955
Passcode is: 476291
To register, click the URL below. You will be sent to a registration form. Please fill it in. You will then be sent a confirmation email. You will need the passcode sent in the registration confirmation email to join the meeting (this is the same passcode as listed above).
https://umich.zoom.us/w/97730008955
The Facebook event link:
https://www.facebook.com/events/1076460556899909
January 21, 2024
The next meeting of the Capital Area Ehlers-Danlos Syndrome Support Group will be on Tuesday, February 13, 2024, at 7:00-9:00 pm, via Zoom, a free web conferencing application. Join us for sharing and support!
The Zoom meeting ID is: 977 3000 8955
Passcode is: 476291
To register, click the URL below. You will be sent to a registration form. Please fill it in. You will then be sent a confirmation email. You will need the passcode sent in the registration confirmation email to join the meeting (this is the same passcode as listed above).
https://umich.zoom.us/w/97730008955
https://www.facebook.com/events/382257397787983/
January 2, 2024
Happy New Year! The next meeting of the Capital Area Ehlers-Danlos Syndrome Support Group will be next week, on Tuesday, January 9, 2024, at 7:00-9:00 pm, via Zoom, a free web conferencing application. Join us for sharing and support!
The Zoom meeting ID is: 977 3000 8955
Passcode is: 476291
To register, click the URL below. You will be sent to a registration form. Please fill it in. You will then be sent a confirmation email. You will need the passcode sent in the registration confirmation email to join the meeting (this is the same passcode as listed above).
https://umich.zoom.us/w/97730008955
https://www.facebook.com/events/189261060878908
November 26, 2023
Hope to see you then!
September 22, 2023
August 30, 2023
The next meeting of the Capital Area Ehlers-Danlos Syndrome Support Group will be on Tuesday, September 12th, 2023, at 7:00-9:00 pm, via Zoom. Join us for sharing and support!
The Zoom meeting ID is:
977 3000 8955
Passcode is:
476291
To register, click the URL below. This takes you to a registration form. Please fill it in. You will then be sent a confirmation email. You will need the passcode sent in the registration confirmation email to join the meeting (this is the same passcode as listed above).
https://umich.zoom.us/w/97730008955
If you get taken straight to the meeting sign-in when you click the link, just click the link at the time of the meeting and enter the passcode 476291 to join the meeting.
I hope to see you at the next meeting!
https://www.facebook.com/events/1303011360324096
July 27, 2023
June 24, 2023
May 27, 2023
The next meeting of the Capital Area Ehlers-Danlos Syndrome Support Group will be on Tuesday, June 13th, 2023, at 7:00-9:00 pm, via Zoom, a free web conferencing application. Join us for sharing and support!
The Zoom meeting ID is: 977 3000 8955 Passcode is: 476291
To register, click the URL below. You will be sent to a registration form. Please fill it in. You will then be sent a confirmation email. You will need the passcode sent in the registration confirmation email to join the meeting (this is the same passcode as listed above).
[https://umich.zoom.us/w/97730008955]
If you get taken straight to the meeting sign-in when you click the link, just click the link at the time of the meeting and enter the passcode 476291 to join the meeting.
https://www.facebook.com/events/552388837090899
May 6, 2023
Passcode is:
476291
To register, click the URL below. You will be sent to a registration form. Please fill it in. You will then be sent a confirmation email. You will need the passcode sent in the registration confirmation email to join the meeting (this is the same passcode as listed above).
https://umich.zoom.us/w/97730008955
If you get taken straight to the meeting sign-in when you click the link, just click the link at the time of the meeting and enter the passcode 476291 to join the meeting.
April 17, 2023
March 21, 2023
February 15, 2023
January 17, 2023
January 1, 2023
December 6, 2022
October 26, 2022
October 5, 2022
The next meeting of the Capital Area Ehlers-Danlos Syndrome Support Group is October 11, 2022 from 7-9 p.m. I hope you can attend! Please register and put this in your calendar!
Register for the meeting:
https://umich.zoom.us/w/97730008955
Information on how to attend the meeting will be emailed to you after you register. You will need the passcode in the email to join the meeting, so read the email carefully.
If the registration link takes you directly to the Zoom meeting the passcode is 476291.
https://www.facebook.com/events/353499286931548
I hope to see you then!
Zebra hugs,
Gayle
September 11, 2022
The next meeting of the Capital Area Ehlers-Danlos Syndrome Support Group is September 13, 2022 from 7-9 p.m. I hope you can attend!
Register for the meeting:
https://umich.zoom.us/w/97730008955
Information on how to attend the meeting will be emailed to you after you register. You will need the passcode in the email to join the meeting, so read the email carefully.
If the registration link takes you directly to the Zoom meeting the passcode is 476291.
https://www.facebook.com/events/652365479195770
I hope to see you then!
May 5, 2022
March 22, 2022
The next meeting of the Capital Area Ehlers-Danlos Syndrome Support Group is April 12, 2022 from 7-9 p.m. I hope you can attend!
Register for the meeting:
https://umich.zoom.us/w/97730008955
Information on how to attend the meeting will be emailed to you after you register. You will need the passcode in the email to join the meeting, so read the email carefully.
Capital Area Ehlers-Danlos Syndrome Support Group meeting | Facebook
February 26, 2022
The next meeting of the Capital Area Ehlers-Danlos Syndrome Support Group is March 8, 2022 from 7-9 p.m. I hope you can attend!
Register for the meeting:
https://umich.zoom.us/w/97730008955
Information on how to attend the meeting will be emailed to you after you register. You will need the passcode in the email to join the meeting, so read the email carefully.
https://www.facebook.com/events/459910672457529
February 7,2022
We’ve been experiencing technical problems at the CAEDSSG national headquarters. The Zoom meeting code changed, and the simplest thing to do is re-register for the meeting if you registered before 2/7/22 5:00 pm. The new passcode is 476291. This may work even with prior registration, but I’m not sure. You can try joining the meeting to see if it works (the virtual space is open all the time).
February 6, 2022
The next meeting of the Capital Area Ehlers-Danlos Syndrome Support Group will be on Tuesday, February 8, 2022, at 7:00 pm to 9:00 p.m., via Zoom. I hope to see you then!
December 26, 2021
Happy Holidays!
The next meeting of the Capital Area Ehlers-Danlos Syndrome Support Group will be on Tuesday, January 11, 2022, at 7:00 pm to 9:00 p.m., via Zoom. I hope to see you then!
I’m sorry I missed posting the December group, and also need to notify you that the face-to-face meetings have been cancelled for now due to COVID activity. I’ll restart them when it seems safer.
October 29, 2021
The next meeting of the Capital Area Ehlers-Danlos Syndrome Support Group will be on Tuesday, November 9th, 2021, at 7:00 pm, via Zoom, a free web conferencing application. Come prepared to share! Questions are always appreciated, and we have knowledgeable members willing to help.
I am happy to announce that the face-to-face meetings will resume in November, specifically on the 4th Sunday of the month (through February 2022), 2-4 p.m., in the Community Room of the Okemos branch of the Capital Area District Library, 4321 Okemos Rd., Okemos, MI 48864. I look forward to seeing you then!
The virtual meetings will continue on the second Tuesdays.
September 27, 2021
The next meeting of the Capital Area Ehlers-Danlos Syndrome Support Group will be on Tuesday, October 12th, 2021, at 7:00 pm, via Zoom, a free web conferencing application. Come prepared to share! Questions are always appreciated, and we have knowledgeable members willing to help.
August 20, 2021
The next meeting of the Capital Area Ehlers-Danlos Syndrome Support Group will be on Tuesday, September 14th, 2021, at 7:00 pm, via Zoom, a free web conferencing application. Come prepared to share! Questions are always appreciated, and we have knowledgeable members willing to help.
Register for the meeting:
https://umich.zoom.us/meeting/register/tJYodeCqqj0rHNUBozKw3U-jemvQfR6l3fTq
Instructions for joining the meeting (the URL) will be emailed to you after you register.
I hope to see you at the next meeting!
Hugs,
Gayle
July 7, 2021
Reminder -next Capital Area EDS Support Group is Tuesday, July 13th, 2021 at 7:00 p.m.
June 1, 2021
May 4, 2021
April 8, 2021
March 1, 2021
January 7, 2021
You can download Zoom at (though you don’t need to to join the meeting; just click on the meeting URL):
It is available for the usual operating systems, and for smartphones. You can even dial in to a meeting -no video, of course. It’s lots of fun, and allows for social contact even in these challenging times.
Register for the meeting:
https://umich.zoom.us/meeting/register/tJYodeCqqj0rHNUBozKw3U-jemvQfR6l3fTq
Instructions for joining the meeting (the URL) will be emailed to you after you register.
December 7, 2020
The next meeting of the Capital Area Ehlers-Danlos Syndrome Support Group will be on December 8th, tomorrow, at 7:00 pm, via Zoom, a free web conferencing application. Come prepared to share! Questions are always appreciated, and we have knowledgeable members willing to help, as well as yours truly.
You can download Zoom at:
https://zoom.us/download
It is available for the usual operating systems, and for smartphones. You can eve
n dial in to a meeting -no video, of course. It’s lots of fun, and allows for social contact even in these challenging times.
Register for the meeting:
https://umich.zoom.us/meeting/register/tJYodeCqqj0rHNUBozKw3U-jemvQfR6l3fTq
Instructions for joining the meeting will be emailed to you after you register.
The topic is open. I want your suggestions for topics! I’ve considered psychiatric problems in EDS and/or supplements used. Come prepared to share what supplements you use (if any), and how they help you. I’m looking for help here!
See you then!
https://www.facebook.com/events/742371886624424
June 9, 2020
May 30, 2020
May 9, 2020
The May in-person meeting has been cancelled -I was planning to cancel it even before the Governor extended the stay home order. I’m not sure we will have a meeting in June, either. However, we have another virtual meeting scheduled for the regular time. It will be hosted by Carla C., and there will not be a 40 minute limit on the session.
The meeting will be on 5/12, next Tuesday, at 7:00 pm, via Zoom, a free web conferencing application. You can download Zoom at: https://zoom.us/download. It is available for the usual operating systems, and for smartphones. You can even dial in to a meeting -no video, of course. It’s lots of fun, and allows for social contact even in these challenging times. Install Zoom on your computer or phone, and copy and paste the URL below into your web browser to join the meeting.
Topic: Capital Area EDS Support Group Zoom Meeting
Time: May 12, 2020 07:00 PM Eastern Time (US and Canada)
https://umich.zoom.us/j/96743651373
Please check out the Ehlers-Danlos Society for support groups and informational chats on Zoom. Events page: https://www.ehlers-danlos.com/events/.
Look forward to seeing you soon!
April 8, 2020
Hi, all. I am writing to confirm what you suspected: the April 15 in-person meeting is cancelled due to the current situation. I hope we will be back to meeting in May -May 12, 2020. More details to come.
Topic: Capital Area EDS Support Group Zoom Meeting
Time: Apr 14, 2020 07:00 PM Eastern Time (US and Canada)
Join Zoom Meeting
https://us04web.zoom.us/j/570204476
Meeting ID: 570 204 476
Topic: Capital Area EDS Support Group Zoom Meeting
Time: Apr 14, 2020 07:50 PM Eastern Time (US and Canada)
Join Zoom Meeting
https://us04web.zoom.us/j/250887987
Meeting ID: 250 887 987
February 4, 2020
January 16, 2020
January 12, 2020
The next Capital Area Ehlers-Danlos Syndrome Support Group meeting is this Tuesday, January 14th, 7-8:45 p.m. in the Community Room of the Okemos branch of the Capital Area District Library, 4321 Okemos Rd., Okemos, MI 48864. We have the room from 6:30-9:00, so feel free to arrive a bit early to mingle. We need to be out of the room by 8:50 p.m. latest, so the library staff can set up the room before they close at 9.
I’m excited about the topic for this meeting: “The joints are jumping! How do you know and what do you do?” I’m hoping to learn new techniques for putting wayward joints back where they belong! I always learn something from fellow group members.
I hope you can attend. Remember to dress comfortably, bring a cushion for comfort (if needed), and no fragrances, please! Many of us have allergies to animal dander as well, so please try to be as dander-free as possible, too.
Hope to see you there!
December 16, 2019
I’m sending out thank yous to the people who attended the group meeting last Tuesday, December 10th. We had a good discussion of self-advocacy led by member Carla C.
The next Capital Area Ehlers-Danlos Syndrome Support Group meeting is Tuesday, January 14th,2020 (!), 7-8:45 p.m. in the Community Room of the Okemos branch of the Capital Area District Library, 4321 Okemos Rd., Okemos, MI 48864. We have the room from 6:30, so feel free to arrive a bit early to mingle.
I hope you can attend! Taking more time for yourself and attending a support group is an excellent New Year’s resolution. The topic is yet to be determined, but I will send an update when it is confirmed.
Remember to dress comfortably, bring a cushion for comfort (if needed), and no fragrances, please! Many of us have allergies to animal dander as well, so please try to be as dander-free as possible, too.
November 6, 2019
The next Capital Area Ehlers-Danlos Syndrome Support Group meeting is Tuesday, November 12th, 7-8:45 p.m. in the Community Room of the Okemos branch of the Capital Area District Library, 4321 Okemos Rd., Okemos, MI 48864. We have the room from 6:30-9:00, so feel free to arrive a bit early to mingle. We need to be out of the room by 8:50 p.m. latest, so the library staff can set up the room before they close at 9.
Our meeting room has been confirmed for the second Tuesdays, Dec. 10, Jan. 14 and Feb. 11! Be sure to put the dates in your calendars.
I hope you can attend. Remember to dress comfortably, bring a cushion for comfort (if needed), and no fragrances, please! Many of us have allergies to animal dander as well, so please try to be as dander-free as possible, too.
Hope to see you there!
September 30, 2019
I’ve been having EDS-related problems, so I haven’t been able to keep this page as updated as I’d like. 🙁
The next Capital Area Ehlers-Danlos Syndrome Support Group meeting is Tuesday, October 8th (a week from tomorrow), 7-8:45 p.m. in the Community Room of the Okemos branch of the Capital Area District Library, 4321 Okemos Rd., Okemos, MI 48864. We have the room from 6:30, so feel free to arrive a bit early to mingle.
I hope you can attend! The planned topic is POTS (postural orthostatic tachycardia syndrome), and coping strategies from group members.
I was unfortunately unable to attend the September meeting. The meeting was moderated by Kimberly, who always does a fantastic job!
Remember to dress comfortably, bring a cushion for comfort (if needed), and no fragrances, please! Many of us have allergies to animal dander as well, so please try to be as dander-free as possible, too.
Now to the personal part. I have been having major issues with EDS-related complications. I will need your help and support not only for myself, but to keep the support group going and strong. I will describe what’s been happening; it’s a long slog to read through. I questioned if I should share this, as it is way too much information, but some of you may be going through this as well, or have in the past, or will in the future. Please let me know if you have any questions.
I’ve had some weird and amazing things going on with my body. First, about 2 weeks ago I was having some abdominal pain (though my bowels seemed to be moving okay). I was feeling around in there, and found both sides of my ribcage had slipped, folding down into my abdomen, and tightly curled by muscle spasm. The bottom three ribs on each side were down, pressing on my gut. Of course, I dived right in, putting my fingers under the ribs and working on uncurling and straightening them. Many times my fingers would slip, and the ribs would snap back in like an old-style roller shade, but I persisted, and finally had success. At this point I decided to postpone my abdominal incisional hernias surgery from 10/2 to 11/20, so I would have time for things to stabilize, and I could get stronger and gain weight. Having less pressure on my gut helped with bowel elimination a lot, and the pain from the rib pressure was improved.
Then, last Friday (9/20) evening I was having abdominal pain again. I could think of nothing that would help, but I knew I could try to reduce my hiatal hernia with gentle traction in the right upper quadrant. When I tried to feel the hollow space under my sternum which would tell me I was successful, I found the epigastrium (space below the breastbone) was full of bowel loops. That didn’t seem right to me, so I started to slowly mobilize them downward into my abdomen. It was soon apparent the bowel loops were going up through the hiatus (opening in the diaphragm that the esophagus and aorta go through) into a hernia. I have a history of a small hiatal hernia, but nothing like this! I was freaked out, but kept working. Eventually I felt a more dense, muscular tissue, and proceeded to gradually pull my stomach out through the hiatus! I then had to take a break, and later when I checked, there was still a loop of bowel high up under the diaphragm, and this one wasn’t cooperating. I kept working at it, then felt some flattened muscular tissue on my right, and gradually pulled the rest of my stomach from the hernia, along with the last bowel loop.
I had a giant hiatal hernia (type IV)! And I manually reduced it! Have you ever heard of such a thing? No wonder I couldn’t eat and was losing weight. It explained the nausea, chest pain, abdominal pain, early satiety and sense of fullness in my stomach. My stomach was curled up in my chest! I really can’t believe my GI tract even worked with that going on. However, my weight has dropped to 120# (I’m 5’9″). I have no idea how long I’ve had this hernia (or the slipped ribs), but it is several months at least. I don’t know how I (and my doctors) missed it.
The hernia slid back up a few days later. I painstakingly pulled it down again Tuesday evening, even though I knew it probably wouldn’t last. I was going to monitor it, and push it down as needed. But when it goes back up, it is a very quick slide, and it did again, so I am back to square zero. I will have an upper GI x-ray tomorrow morning to see what the hernia looks like. I will probably need major surgery -I suspect I’ll be going to U of M (I live in East Lansing).
I am exhausted, and I can’t eat, and my POTS is worse. I also hurt everywhere, as usual, but have made some musculoskeletal improvements.
So, I need you, my friends. I will do my best to make it to meetings, and plan them, but I may not be as prompt as I’d like. Everything I have to do seems like a major undertaking. If you would like to moderate a meeting, or have a particular topic you would like to lead a discussion in, please let me know.
I will keep you posted as I learn more about what’s going on.
June 8, 2019
The next Capital Area Ehlers-Danlos Syndrome Support Group meeting is next Tuesday, June 11th 7-8:30 p.m. in the Community Room of the Okemos branch of the Capital Area District Library, 4321 Okemos Rd., Okemos, MI 48864. We have the room from 6:30, so feel free to arrive a bit early to mingle.
This is actually the first anniversary of the support group! I started it last June, and we’ve come a long way. I’d like to ask those who’ve attended previously, but were put off by the lecture format to return, and see the changes in the meetings. Also, FYI, I’m sending this email out to 85 members, 60 of whom who have attended at least once! Let’s see how full we can pack the room!
We will be discussing pain management with trigger point therapy in EDS. There will be a short presentation on trigger points for those of you who aren’t familiar with them. Feel free to bring your favorite tool for trigger points, or other massage techniques. Also bring a yoga mat if you have one, in case you want to try some of the lying down techniques. If you don’t have a mat, no worries, there should be enough to take turns. Please bring any trigger point references you use -most of them go back to Travell and Simon’s work. We will be breaking into small groups to get hands-on experience in identifying and working on trigger points (this is optional if you are very sensitive or in pain).
I’d like to start the meeting with time to address questions and concerns of members.
Remember to dress comfortably, bring a cushion for comfort, and no fragrances, please! Many of us have allergies to animal dander as well, so please try to be as dander-free as possible, and leave the feather boas at home!
May 7, 2019
The next Capital Area Ehlers-Danlos Syndrome Support Group meeting is next Tuesday (in one week!), May 14th 7-8:30 p.m. in the Community Room of the Okemos branch of the Capital Area District Library, 4321 Okemos Rd., Okemos, MI 48864. We have the room from 6:30, so feel free to arrive a bit early to mingle.
We will be discussing pain management with self-treatment measures, including trigger point therapy, in EDS. There will be a short presentation on trigger points for those of you who aren’t familiar with them. Feel free to bring your favorite tool for trigger points, or other massage techniques. I look forward to your input as well as questions on these topics.
Remember to dress comfortably, bring a cushion for comfort, and no fragrances, please!
April 15, 2019
I missed posting about this group meeting. It was, again, wonderful, and we had good discussion of GI issues in EDS. Working on getting a transcript together!
March 13, 2019
Thanks to all support group members who were able to come to the support group last night! It was a great experience! Imagine 17 Zebras and 3 Zebra Wranglers in one room! Best turnout yet!
Last night’s talk was on structural issues in the upper GI tract in EDS. The PDF of the slides will be on the website if you’d like to take a look. There are a couple of bonus slides at the end!
We had a good Q&A session, some discussion of elimination diets and the low FODMAP (short-chain carbohydrates) diet. One member noted the problem foods may be tolerated in small amounts, but multiple kinds or too much of one trigger food can cause symptoms. For our next meeting I’d like members to bring information about foods they can’t tolerate, symptoms, and how they figured it out.
We discussed the possibility of a “buddy system” when accessing healthcare services, i.e., going to the doctor or ER. Many members feel they are not heard by healthcare providers, or just belittled and sent away. One member noted a letter from a tertiary center, like Cleveland Clinic or Mayo, detailing treatment of her and her son’s rare condition (a rare mitochondrial disorder), is very helpful (if you can get the doctor to read it!). I think even a letter from your primary care physician or rheumatologist would be helpful. Hell, I’ll write one for you!
We listened with warmth and respect when members discussed the challenges they are facing, and I was so pleased when members made suggestions about things I was unfamiliar with. One is a blood test for how your body metabolizes different drugs. GeneSight.com is what she recommended; this may or may not be covered by health insurance. She said it was very helpful to have a copy of the results when she went to the ER –she knew which drugs she couldn’t take, drugs that she would metabolize more quickly, and need more than usual doses, etc. There are other tests also available; I remember ordering them in my past life (when I worked!), but can’t remember the details.
There was more, but my memory fails me. We need an official secretary!
For those of you who attended the group in the past, please come back and check it out! The group has evolved, and I have learned a lot since starting the group last June.
February 12, 2019
The meeting was cancelled because of hazardous road conditions.
January 9, 2019
We had another informative and fun meeting last evening. We had a total of 16 attendees this month! We discussed treatments for MCAS. I posted a PDF of the meeting slides, which include principles for treatment of MCAS from Afrin’s book, as well as medications used from the Mastocytosis Society.
We are working on collating information that is critical in our medical care, which can be printed on cards to give to our providers. I have one I made before I had my wisdom teeth removed in September -just need to find and edit it! Need to add fluoroquinolone sensitivity/allergy. I have it as a Word file, and can also scan as jpg.
We are collecting names/locations of helpful providers, including dentists (as well as doctors, PTs, etc.). You can submit them to me via email -I have an xls document I’m putting them in, and will eventually be able to sort by region and specialty! Woo-hoo, technology!
Next meeting is February 12!
January 1, 2019
Happy New Year! I can’t believe it is 2019! The next support group meeting, our eighth consecutive monthly meeting, will be in one week, on January 8th! I hope to meet you then, when the year is still fresh and new! It is the same location and time as listed below.
December 3, 2018
This is a reminder that the next Capital Area Ehlers-Danlos Syndrome Support Group is next Monday, December 10th, 7 p.m.-8:30 p.m., at the CADL Okemos Branch, 4321 Okemos Rd., Okemos, MI 48864.
The meeting will be more informal this time. We asked that you make a list of treatments that you use for mast cell activation syndrome (MCAS) attacks, and also regular medications and/or supplements you use, and how helpful they are. We will be discussing this, and perhaps we could collect the information to share.
Also, many of us have problems with our hands, and I’d like to share some techniques I’ve developed which seem to have helped quite a lot with my hand pain.
If there is time, we will discuss some ways to cope with the stress associated with the holiday season.
Coming soon: a presentation on complementary and alternative medicine (CAM) and EDS, from one of the members.
Remember, please, no strong fragrances, and try to be as animal dander-free as possible, as many of our members have allergies and sensitivities. No yoga mats needed for this meeting, but you may want to bring a chair cushion.
I am happy to announce our meeting times for January, February, and March are confirmed: second Tuesday of the month, same zebra-time, same zebra-place!
November 9, 2018
The next support group meeting is next Tuesday, November 13th at 7 p.m. to 8:30 p.m. at the Capital Area District Library, Okemos branch (Hope Borbas Library) in the Community Room. Chris Sovey, a doctor of physical therapy, will be our guest speaker, and will have good information to share. Hope you can join us! Click here for Facebook link for event.
October 13, 2018
We had an excellent attendance for the meeting 10/9/18. An overview of pain and its management was presented. You can view a PDF of the slides here.
I sent out an email after the support group meeting because I feel the presentation went way too long, and I want to make some changes in the future meetings. The email follows:
This is a long message. I hope you will take the time to read it, because it is about positive changes in the way the support group will proceed.I want to thank those who came to last evening’s support group. I gave a presentation on pain management, and we had some good give and take throughout the meeting.But, in part because of the give and take, but mainly because my presentation was way too long, there was no time for more sharing during the meeting (mea culpa!).My goal has been to impart information on EDS and its management. Since I come from a medical background, to me that has always meant teaching facts and mechanisms by which conditions produce pain or other effects, and how to counteract them. I also have a drive for detail that is hard to suppress. This has led to presentations which are basically information overload, and the helpful gems are hidden in way too much information.You may know that I have never led a support group before, but I also have never been in a support group. I always request feedback, and got very good feedback last night.So, to those who attended last night’s meeting, and those who came to previous meetings, I want to announce a change in the way the study groups will proceed from this point on. Presentations will be very short, 10-15 minutes, and will be based on practical issues. We will have time for sharing our stories, and learning from the experiences of other members.I will have more in-depth information available for those who desire it, including links to websites.Next month, Chris Sovey, DPT, of Healthy Consumer Physical Therapy, will be our guest speaker. He will have very useful information not only on physical therapy in EDS, but on managing the depression and anxiety that go hand-in-hand with EDS.So, if you have been to the support group before, and found it was too much lecture and not enough time to talk about your issues, please be assured that this is changing. This has been a learning process for me, and I will always welcome input from members. This is your group as well as mine, and I want us to navigate it together. The one thing I want to avoid is the meeting becoming a negative space, where all we have is moaning and groaning about how awful we all feel. My idea for the December meeting is for each of us to share a challenge presented by EDS, and how we managed it successfully.Thank you for taking the time to read this. I hope to see you at future meetings.Zebra hugs,Gayle
October 2, 2018
The next support group meeting is in one week, on Tuesday, October 9th, 7-8:30 p.m., at the same location, Capital Area District Library, Okemos branch. Click here for Facebook link for event. At this meeting I will be presenting the first talk of a series on pain management in EDS. Hope to see you then.
September 21, 2018
Happy Autumn!
Yet another wonderful support group meeting on this last Tuesday! We had attendees from Saginaw, Saline, Ypsilanti, and Eaton Rapids, as well as the Lansing area. We discussed syndromes which can occur along with EDS, and learned from members with history of severe mast cell activation syndrome problems, reactions to fragrances, foods, and chemicals (including good old ethanol -alcohol); dysautonomia, POTS, and SIBO. I passed around a clipboard for care provider recommendations, and I will be making them available here on the articles page. Next meeting will be October 9th.
September 8, 2018
The third support group meeting on August 9th went very well! There were new faces as well as familiar ones. We had a recap of core and posture, with diagrams of the muscles involved, and demonstrated exercises for deep core muscles from the work of Irmgard Bartenieff: Rock and Roll, Thigh Lift: Pre-Lift, and seated core work (activating core while sitting upright; imagine you are a tube of toothpaste and, by activating your core muscles, you are squeezing toothpaste out of the top of your head!). Many group members participated in trying the exercises, and some, knowing their own bodies and capabilities, chose not to participate, but had a good time learning from one another.
PDFs of the meeting slides are available under the articles button to the right.
The next meeting is this Tuesday, September 11th, at the same location, Capital Area District Library, Okemos branch, 7 p.m. to 8:30 p.m. Again, you may bring a beverage or snack; filtered water will be provided. I was reminded that many of our members are very sensitive to fragrances and chemicals, so, please, no perfume, cologne, or after-shave! Feel free to bring cushions to the meeting. The plastic chairs are not very accommodating! Yoga mats are optional this meeting. Exercises will most likely be in the seated position.
July 15, 2018
We had a great turnout for the second meeting of the Capital Area Ehlers-Danlos Syndrome Support Group, with some attendees from out-of-town (I will add city to the sign-in sheet so I get a sense of our demographics). A group member took a photo which you see below. We discussed posture and core-strengthening, with demonstrations (by me) and a few slides to help. There were introductions all around, and sharing of experiences. Again, I learned more about EDS and its impact, with each person describing a unique set of problems stemming from EDS, with common features of hypermobility and variable skin issues.
I hope to see new faces, as well as seeing people from the past two meetings, at our next meeting August 9th!
I will create a new Facebook event for each meeting, starting with 8/9/18. We will shift to the second Tuesday of the month starting in September (more library events in the Fall), with Fall dates 9/11/18, 10/9/18, 11/13/18, and drop back to Monday 12/10/18 because of a scheduling conflict. Same location, CADL Okemos, 7:00 p.m.-8:30 p.m.
June 15, 2018
The first meeting went well! I thank the attendees for being there, and we enjoyed sharing some of our experiences with EDS. A presentation on EDS was delivered; a PDF of the slides is available on the articles page.
I’ve also posted a list of online resources for EDS, and online support communities on the articles page. Check them out!
I hope to meet you at our next group meeting, July 12th, same bat-time, same bat-place!
May 23, 2018
The first meeting for the Capital Area Ehlers-Danlos Syndrome Support group will be the second Thursday of June, June 14, 2018 at 7 p.m. to 8:30 p.m. at the Capital Area District Library, Okemos branch (Hope Borbas Library) in the Community Room.
4321 Okemos Road
Okemos, Michigan 48864
For Google map of the library’s location, please click here.
There are 2 more meetings planned -the same time and location- on the second Thursday of July (7/12) and August (8/9). I’m not sure if the library will have the same time slot available later in the year, so we’ll have to play it by ear!
I am very excited to be starting this support group and hope for many attendees. I hope to meet you soon!
