Spring 2020 Virtual Support Group Meeting Recaps

April 28, 2020

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.

View a recording of the meeting and Jennifer’s presentation.

Print slides from the presentation (links to PDF).

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/

Treasure Coast Ataxia Support Group 5/2 Meeting Recap

Several links and websites were noted and our Walk and Roll Virtual Event on May 16, was discussed. To help spread awareness of Ataxia, Ataxia Rocks were shown and encouraged to be distributed wherever you may be.

Our Special Guest was Mike DeRosa, an exercise specialist who was very encouraging and helpful. Mike spoke about the importance of exercise and shared his dedication as “fitness is a cornerstone of life.” He maintains that fitness is our light and we “use it or lose it”

Mike had printed materials of exercises for the different areas, as well as, muscle groups of the body. He shared his experiences with ataxia and exercise and answered all questions asked. He encouraged anyone to contact him whenever needed.

The importance of brainwork was shared and two avenues were given. One was Elevate. com app, that gives you daily activities to pursue and the other was the book Soft-Wired- How the New Science of Brain Plasticity Can Change Your Life by

Dr. Michael Merzenich, PHD. Both are excellent resources.

The discussion continued with much experience, laughter, and support. It is terrific to have ataxia warriors from several states sharing their days and creating comradery. We had folks from North Carolina, Ohio, Massachusetts, Tennessee, Virginia, and different parts of Florida in our meeting.

Sioux Empire Support Group 5/9 Meeting Recap

9 people attended the virtual 5/9 Sioux Empire Support Group Meeting. The group shared how they were doing and the challenges they were experiencing while sheltering in place. The group talked about their fall walk n roll fundraiser and the NAF webinars. Kendra Gottsleben was the guest speaker that discussed her advocacy work with the group. Stay connected with our group through our Facebook Group: https://m.facebook.com/groups/1606527972792690.

Sioux Empire Support Group 5/9 Meeting Recap

Idaho Support Group 5/9 Meeting Recap

3 people attended the virtual Idaho meeting. The group shared the challenges they experienced getting diagnosed and connecting with others with the same diagnosis. The group also talked about the challenges that the pandemic has had on their lives and ability to access medical care. Topics of the recently held NAF webinar were discussed. Stay connected with our group through our Facebook Group: https://www.facebook.com/groups/342179486438058/.

North Texas Support Group 5/9 Meeting Recap

11 people attend the first virtual North Texas Support Group Meeting. The group shared how they were doing and how other members of the group have been doing the last few months. The group shared thoughts about when and how to meet next. Connect with us on our Facebook Group: https://www.facebook.com/Ataxiasupport.

Cincinnati Support Group 5/10 Meeting Recap

Submitted by Richard Hartman

We had our 1st virtual meeting yesterday. It went well. The world has changed, so instead of physically meeting, virtual is the preferred venue. Do to the fact we met via Zoom we actually had a new member, Laura from New Mexico. Welcome Laura. Amy, also was able to attend. Amy is from Lexington Ky. I believe she attended our 1st support meeting in downtown Cincinnati, so it was nice to meet her.

Regardless of the ‘reopening’ of society we will meet virtually again for the next couple of months. Hopefully more can attend in the future, since the meeting will not be in contention with a holiday.

Yes, we are mostly confined to our house because of our ataxia. So, staying home is not a major problem for us, now the rest of society has the wonderful opportunity to experience this. I still miss the physical presence of another. I just hope everyone remembers to be ‘kind’ whatever the ‘new normal’ is. Actually, I believe we will have many so called ‘new normal’.

Facebook Group: https://www.facebook.com/CincinnatiAtaxiaSupportGroup/

Toronto Support Group 5/15 Meeting Recap

Submitted by Mark Desa

On May 15th, we heard from a few special speakers with lots of great information. If you missed them, here’s what was covered:

Michelle McClure spoke about Ability Online and all the services they offer for disabled youth, caregivers and professionals.

Keisha G. shared her journey with Muscular Dystrophy (MD) and how she has built her own business.

Sarah Helt is a yoga instructor at Accessible Yoga. We talked about making yoga accessible to those with disabilities.

Alvaro Silberstein from Wheel The World talked to us about how he arranges travel for people with disabilities.

Connecticut Support Group 5/15 Meeting Recap

7 people attended the first Virtual Connecticut Support Group Meeting. Dr. Machado from the Hartford Healthcare Movement Disorders Center joined us along with Lori Shogren from the NAF. The group talked about shared how they were exercising, fears of falling, challenges with genetic testing, attending the NAF webinars, the state of clinical trials, and access to clinical visits. Our group plans to meet monthly virtually. Our speaker next month will be an occupational therapist.

To get involved with the group contact Susan Masse Phone #: 860-528-1875 | E-mail: Smasse1875@gmail.com

Twin Cities Support Group 5/16 Meeting Recap

32 people attended the first Virtual Twin Cities Ataxia Support Group meeting. The group enjoyed seeing everyone for the first time as a group since February. The group plans to meet virtually monthly on the third Saturday of the month. We had a great discussion on grief, loss, and relationships. Our guest speaker, Kat Bernhoft facilitated the discussion and offered helpful insight to the experiences shared by the group. Those experiences included communication about ataxia and daily living with family and grief of the loss of access to family during the pandemic and abilities like driving. A key take away that Kat provided was that compassion for ourselves is essential and can be difficult. Kat also shared some helpful resources including adaptive yoga video by Matthew Sanford https://youtu.be/LWc1XuKyDD8.

Stay connected with our group by joining our Facebook Group: https://www.facebook.com/groups/103233603504142

Treasure Coast Ataxia Virtual Walk N' Roll to Cure Ataxia - 5/19

Submitted by Kathi Yule

The Treasure Coast Ataxia Virtual Walk n’ Roll meeting started on Saturday, May 16, 2020 at 9 am as Lisa Cole zoomed in on Zoom and Facebook Live to start the Event. Participants from various areas began their quest to accomplish their event goal as added funds were earned for the goal of finding a cure for Ataxia. When the finished points were crossed, Lisa suspended the meeting until 11:30 where the terrific Raffle started. Gift cards were presented as the wheel spin selected the lucky winners. Members enjoyed the interaction and support of each other.

Philadelphia Support Group Meeting Recap - 5/23

9 people attended the first virtual Philadelphia support group meeting. The group enjoyed welcoming a few new members. We had some good discussion about the NAF webinars, participating in this year’s virtual walk n roll, medical ID bracelets and cards, when to get assistive items like shower rails, challenges we are facing such as cognition, and what we CAN do today to enjoy and keep busy. Our next virtual meeting will be in August.

For more information about our group contact Jason Armstrong at Phone #: 215-378-3496 | Email: writeonfighton@gmail.com

Treasure Coast Support Group 5/23 Meeting Recap

Submitted by Kathi Yule

Lisa presented an informative snap of many sites we can access for knowledge and enjoyment. She reviewed NORD, NIH, Cords, Ataxia.org, among others. We were enlightened by learning how to go on virtual Disney rides, open popular virtual tours, such as Americas Natural Parks as well as our ability to choose a virtual background, to add fun to our sharings.

This meeting brought forth the importance of connecting with others experiencing similar frustrations. As Ataxia is rare, many excellent physicians do not know the diagnosis of our multi-faceted symptoms. We also discussed how great it was to be able to connect with people from all over, including different areas in Florida, Virginia, Missouri, and Michigan. Look for, and distribute Ataxia Rocks wherever you may be.

Positive interaction, laughter, and support ended our meeting.

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, Events, Resources, 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.

Las Vegas Support Group 5/30 Meeting Recap

We had our first Las Vegas Ataxia Support group meeting on 5/30. 3 people attended. The group enjoyed getting to know each other and discussing our journey with Ataxia and medical resources we utilize. The group plans to hold our next meeting on Saturday, August 1 at 10am.

For more information contact Howard Silverman at Phone #: 702-290-6724 | Email: Silverman3@cox.net

Join our Facebook Group: https://www.facebook.com/groups/2090650814550409/?hc_location=group

Name Support Group 5/30 Meeting Recap

Submitted by Name

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