Winter 2020 Support Group Recaps

Virtual support group meetings will continue on through the winter months. Read the latest support group meeting recaps here.

Find an upcoming meeting to join at www.ataxia.org/events.

Treasure Coast Ataxia Support Group Meeting Recap - December 5th

Submitted by Kathi Yule

As people were checking into our zoom meeting on Saturday, December 5, 2020, Robert Dean started us off with sounds of Christmas.  

At 11 am Lisa Cole opened the Support Group by sharing her screen which is full of sites to visit and become familiar with, for all kinds of help and questions that come up.  She encouraged us to know her email, lisacoleataxia@gmail.com, and to contact her at any time.  She is always ready to encourage and direct any needs we may have.  After going over various sites, Lisa had us introduce ourselves and share what is going on in our lives with Ataxia.  

Our virtual group has folks from several areas of Florida, North Carolina, Arizona, California, Virginia and we are open to Ataxians from anywhere. Lisa took a screenshot and then began to share photos we had sent her of interests we used to do. Each participant talked about their picture and the enjoyment they had experienced.

Break out rooms were assigned and support continued in groups of four.  

We came back together, to finish up any loose ends and the meeting was adjourned about 12:30.

Western Washington Ataxia Support Group Meeting Recap - December 12th

Submitted by Sterling Yarborough

The Western Washington Ataxia Support Group took a virtual tour of European Christmas Markets.

This picture took place in between viewing the Christmas Markets of Budapest, Hungary and Christmas Markets across Germany

Sioux Empire Ataxia Support Group Meeting Recap - December 12th

Submitted by Mary Beth Farley

We only had 5 people in attendance at our support group today.  But one was a first time attender from Pierre, SD.  She will likely become a regular.  Her name is Kathy,  She has SCA6.  We talked about each other/our families/some who’ve had COVID. A woman lost her grand daughter who had SCA1 just a few days ago. ):

We are going to be sending gift cards to the kids/teens at the Sanford Specialty Hospital in Sioux Falls (The Castle) for Christmams.  In the past, we’ve actually gotten gifts and taken them there.  This was our 2 yr.  Anniversary !!  (The group held its first mtg in Dec. 2018) Our next mtg will be Jan. 9th, 2021.

Treasure Coast Ataxia Support Group Meeting Recap - December 19th

Submitted by Kathi Yule

With festive attire, Lisa Cole opened our December 19, 2020 Support Group meeting at 11:05. She shared her screen to review websites that are informative and helpful. Lisa’s thorough agendas make access to these websites readily available, click and go.

 

Our own live Santa, David L., was ready to hear and fulfill our wishes.

 

Lisa asked our speaker, Dr. Rana Hanna Al-Shaikh, if she could record her presentation for the 2pm meeting. She affirmed the request.

 

Dr. Rana Hanna Al-Shaikh leads the Research at Mayo Clinic focusing on Spinocerebellar Ataxia. They are having lots of success. She defined this Ataxia as “without order or coordination and cerebellar dysfunction.” Dr. Rana Hanna Al-Shaikh and her team focus on the 48 genetic subtypes of SCARS.   

The Mayo Clinic Florida Ataxia Program is expanding its Clinical Trials as they continue to study outcomes with control groups. Detailed information was presented and explained. Questions were received and answered. Her information was helpful and Dr.

Al-Shaikh is available to us via email.

 

Lisa resumed the group meeting and shared two short videos. She also informed us about the NAF virtual Conference on March 10-13. 

 

Introductions were shared and tips were given. Among those were:

 

*color, paint, play games such as Operation, to help maintain fine motor skills

*Get an Ataxia card for your car as well as have one available at all times.

*Use a spill me not holder for carrying liquids. -Available on Amazon

* set up a card table and do puzzles

* replace the bathroom towel rack with a grab bar for more stability.

* Always have a medical alert button (bracelet) on.

*Sign up with CORDS. Your information is secure.

 

Again, participants were from several states, including several areas of Florida, Tennessee, Southern California, Virginia, and Utah.  Zoom meetings bring such positive assets to each of us.

 

Break Out Rooms were held for about 12 minutes and then Lisa shared her meeting schedules.

 

The meeting was adjourned. The next meeting will be on January 9 at 11 am and 2 pm.

Western Washington Ataxia Support Group Recap - January 23rd

Submitted by Sterling Yarborough

It was on January 23 that the Western Washington Ataxia Support Group had their first meeting of the new year. In this meeting, there was a simple competition to see who had the “best” quarantine pet, or simply the best pet to spend our current quarantine with. Although many pets entered into this contest, only one could be voted the “best”, and that title belongs to London, the dog belonging to Tony. Named after the city in which his owner lived; London is a dog who had already received media attention. London is credited with saving the life of a family friend who was visiting Tony’s family. That friend collapsed as the result of a life threatening blood clot. London used his face licking skills to revive the man enough so that 911 could be called. This assistance dog remained by the side of the needy gentleman until assistance arrived.

After telling our group this story of heroism, London showed off by taking snacks from Tony’s mouth, which charmed our voters. London was voted “Best Pandemic Pet” by our support group and we are all looking forward to the day when London attends his next actual in person meeting.

Tony and London will enjoy a Starbucks gift card to celebrate their win.

Treasure Coast Ataxia Support Group Recap - January 23rd

Submitted by Kathi Yule

Lisa Cole opened our Virtual Treasure Coast Ataxia Support Group meeting at 11 am on Saturday, January 23, 2021 and again at 2pm.

Our speakers, Mary Ann Peterson and Sue Hagen asked us to introduce ourselves before their presentations.  They each have a passion for nonprofits and shared their knowledge and work ethic with us.   

Sue told us how treatment and cures are progressing.  There are now 27 pharmaceutical companies that are reaching out for answers. She also explained the Brain Donation Program which brings new insight into the research being advanced. It is such a positive way to help tissue researchers learn more about the shrinking of the cerebellum. 

Mary Ann continued by explaining that there is no cost to the family and how important it is to have everything pre planned as there is a six-hour window to make a smooth transition. The leading scientist in this field, Dr. Ranum, and her staff has informed consent forms so the donation tissue process is accomplished efficiently and sent to the University of Florida.   

You can receive the checklist of what needs to be done for pre-planning by contacting Mary at  Mary@ataxia.org and/or Sue@ataxia.org.

We appreciated this presentation and found it most helpful to all involved. 

Lisa shared websites to visit and I will include these at the end.

Tips were shared and hopefully, something will inspire you!

*Be Positive
*Keep Moving
*Play music while doing PT
*Laugh
*Know your glass is half full
*Participate in Ageless Grace
*Wear earphones
*Paint Rocks
*Do chair aerobics
*Keep learning
*Sit on a big ball
*Write things down
*Have a card with you to explain what you have
*Use an electric toothbrush
*Practice falling and getting up (good YouTube videos)
*Pray
**Live your best life!!

Western North Carolina Ataxia Support Group Recap - January 29th

Submitted by Magdalene Dentremont

We had our Support group meeting yesterday. We thoroughly enjoyed ourselves. Jonas Cepkauskas was our Guest Speaker, and he did a great job! 

Johns Hopkins University Ataxia Support Group Recap - January 29th

Caroline Griffin is a board-certified and Maryland-licensed occupational therapist. Her current passion is treating adults with neurologic conditions. She enjoys discovering new ways to help improve her clients’ quality of life.

Ms. Griffin created this list of adaptive tools and where to purchase them as discussed during her presentation on January 29, 2021. Please click on the link below to access this list.

Other Support Group News

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