Spring 2020 Virtual Support Group Meeting Recaps

COVID-19 is affecting many areas of life. While our Support Groups haven’t been able to meet in person because of Stay At Home orders across the country, many have gone virtual. Check our events calendar for upcoming virtual meetings. Below are recaps about some recent Support Group meetings.

Greater Atlanta Support Group 4/18 Virtual Meeting Recap

Submitted by Greg Rooks

We had a great meeting on Saturday April 18th.  Not as good as seeing everyone in person but the Zoom video conferencing worked pretty good.  We had about 15 people joining us.  Jennifer Pagano’s presentation on genetic counseling was very interesting. Thanks to all that were able to join.

To view a recording of the meeting and Jennifer’s presentation click here

To print slides from the presentation, click here.

Our next event is our annual picnic on May 30th. More information will be sent later if cancellation or rescheduling is needed.

Connect with us for more information:

Support Group Email: atlantaataxia@gmail.com
Facebook Group: https://www.facebook.com/groups/317380459539/

South Carolina Ataxia Support Group 4/18 Meeting Recap

The first South Carolina Support Group online meeting on 4/18 had 6 attendees. Here’s a picture from that meeting.

The group shared their experiences and challenges with Ataxia. Various resources were shared by the group members. Topics of interest to the group to discuss at future meetings included exercise, eye movements, disability employment, and mental health. The group has plans to have meeting monthly.

To get involved with the group contact Simone Jasch at Phone #: 803-704-0134 or Email: schild100@yahoo.com. Join the group’s Facebook Group: https://www.facebook.com/groups/3479924228744786/

Nebraska Ataxia Support Group 4/18 Meeting Recap

The Nebraska Ataxia 4/18 Online Meeting had 20 attendees.

Sioux Empire Ataxia Support Group 4/18 Meeting Recap

Submitted by Mary Beth Farley

The Sioux Empire Ataxia Support Group met on Saturday, April  18 at 1:00 pm via Zoom video chat. We also had a couple of guests with us: Kendra of Sioux Falls and Laurie from British Columbia. Kendra will also be our guest speaker on May 13th.  Everyone introduced themselves and their connection to the world of people disabilities, as well as we spoke about how they are coping and managing during this time of social separation. Then Sandy presented her biography about who she is and what she is learning/managing now in the world of Ataxia. 

We talked about the fundraiser and the Walk N’ Roll website or people can donate to the NAF. That website is https://app.mobilecause.com/vf/AtaxiaWalkSD.  We then had some discussion about a letter that we would like to send out to potential sponsors.

Treasure Coast Ataxia Support Group 4/25 Meeting Recap

Submitted by Kathi Yule

The weekly Zoom meeting of our Treasure Coast Ataxia Group opened on Saturday, April 25 at 11am. Lisa made introductions and announcements as well as showing terrific web sites, which are informative, helpful and available to us.

Lisa introduced our feature presenter, Kyle Bryant, author of Shifting Into High Gear. Kyle shared his understanding and eloquently discussed our understanding and expressions of our main thread of Ataxia, as our personal situations vary. He suggested we look at Ataxia as an opportunity to make a difference.His story is one of “pursuing adventure in the face of adversity” Kyle showed his home and how he has made accommodations for himself. Certainly Kyle is an enlightening hero who inspires so many. Questions were asked and answered. Interactions from many areas were great.

We look forward to the weekly Saturday morning meetings on zoom. Our next meeting will be Saturday, May 2 at 11am. Be sure to pre-register. Looking forward to our next guest too.

Detroit 4/26 Support Group Meeting Recap

16 people attended the Detroit Ataxia Support Group Meeting on 4/26. Dr. Shakkottai answered questions from members about the COVID-19 pandemic and the risk for patients with Ataxia, the impact the pandemic has had on clinical trials, where things are at with a vaccine, and telehealth visits that will be available to patients through the year. Members shared how they are coping while sheltering in place with getting groceries, watching NAF webinars, staying active, and connected with family. Members also shared their thoughts on continuing to social distance or shelter in place even after businesses start opening up to continue to stay safe.

Portland Ataxia Support Group 4/26 Meeting Recap

9 people attended the group’s first virtual meeting. The group shared how they were coping during the pandemic. They talked about accessible housing and the benefits on one story living, railings, and elevators. The group also discussed the psychological difficulties of transitioning to using a walker or wheelchair. Everyone talked about how much they enjoyed the NAF webinar on Physical Therapy and how beneficial if was to hear about the eye issues that were mentioned. The group also talked about insurance issues with getting genetic testing done and are looking forward to attending the upcoming NAF webinar on genetic testing.

Arizona Ataxia Support Group 5/2 Meeting Recap

24 people attended the first Arizona Virtual Support Group meeting. The group shared how they were adapting and spending their time while sheltering in place and the physical and mental challenges that the isolation has had on their well-being. Dr. Shah was are guest speaker and answered many questions about the COVID-19 pandemic and treatments for ataxia.

Stay connected with us:
 
Support Group Email: ArizonaAtaxia@gmail.com  
Facebook Group: https://www.facebook.com/groups/arizonaataxia/

Central Indiana Ataxia Support Group 5/2 Meeting Recap

11 people attended the first Virtual Central Indiana Support Group meeting. The group shared how we were all fairing while sheltering in place and safety considerations and concerns when restrictions are lifted. The group also discussed participating in clinical trials, research studies, and genetic testing. Some good resources were also shared such as the HowWeFeel App and the Chronic Joy organization.

Denver Support Group 5/30 Meeting Recap

Submitted by Charlotte DePew

Seventeen members joined our second virtual meeting via Zoom Saturday at 1:00 PM, May 30.  Even though we did not have a speaker, we had a robust 90-minute conversation on how we are each coping with the isolation, our ataxia, and staying in touch with others.  One new member was present.  Our next virtual meeting is July 18, 2020 at 1:00 PM.

Stay connected with our group and join our Facebook Group: https://www.facebook.com/groups/denverataxia2011/

Treasure Coast Support Group 5/30 Meeting Recap

Submitted by Kathi Yule

Lisa Cole opened the virtual Treasure Coast Ataxia Meeting shortly after 11 am on Saturday, May 30, 2020. Lisa had us introduce ourselves, as in Zoom we can see each other, and we become better acquainted.

Lisa reviewed web sites as well as activities available on Webcam   She also specified that  The Good Witch Season 3: Episode 11 deals with someone with Ataxia. She then introduced our speaker, Stephanie Lucas, who is the Communications Manager of NAF.

Stephanie shared details of the NAF site, answering questions as they came up. She encouraged us to become familiar with the site as it has a vast amount of information for us all. A few of the areas are Blog, Education, Member stories, EventsResources, Research, and  several other areas. It is a thorough and very helpful source.

Following this presentation, meeting participants from Florida, Michigan, Minnesota, Virginia, and Tennessee introduced themselves and began the welcoming camaraderie.  With Lisa’s positive, informative direction, experiences, medications, concerns, and tips were shared.

Perhaps the best way to help ourselves is by eating healthy, exercising regularly, drinking plenty of water, and having good rest. Our meetings also give us very positive interactions.

Lisa ended the meeting sharing a webcam program to watch and chatting with those who stayed until 1:00 pm.

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