Summer 2020 Virtual Support Group Meeting Recaps

As the summer gets going, many of our Support Groups have been meeting virtually to stay connected. Check our events calendar for upcoming virtual meetings. Below are recaps about some recent Support Group meetings.

Treasure Coast Ataxia Support Group Meeting - June 6th

Submitted by Kathi Yule

Lisa Cole opened our Virtual Treasure Coast Ataxia Support Group Meeting on Saturday, June 6 at 11:00 am. We enjoyed our joyful greetings and Lisa reviewed various web sites, virtual tours, and well as web-cams. On Youtube, you can search ataxia and continued to – rally.partners.org, excellent information. She asked us to forward, to her, any sites you may find that would be of interest to the group.

Our featured speaker, Jonas Cepkauskas, who has had ataxia for 25 years, encouraged us to learn as much as you can about ataxia. No matter what type you may have, or if you are still undiagnosed with a particular number, we all have ataxia. He has been told, after years of not knowing, he has SAC 15 which is very rare. (How many of us have heard that-very rare-unknown)

Jonas runs the FIGHT ATAXIA PROJECT which supports and helps people learn to cope with the disease. He maintains there always is a reason for our “bad days.” Do not hesitate to take a nap. Keep a journal of your days and find out what affects your body. He also explained that as we get older we actually get younger and become like a toddler. He has a video on that imagery called The Toddler Connection, on his web site. Jonas emphasized to do what is best for YOU. His knowledge is based on experience, studying and working with ataxia Doctor Specialists, and dealing, himself, with ataxia for 25 years, the first ten undiagnosed.

Mr. Cepkauskas has written a book, LIFE WITH ATAXIA and it, along with videos and much information, is available on his website, FIGHT ATAXIA PROJECT. He answered numerous questions and assured us not to let pride get in our way of using a cane, walker, or whatever keeps you safe. Jonas says that there are no medications that eliminate ataxia. You must be your own advocate as you are your own best doctor. Again, do what helps you!

Lisa had us introduce ourselves and continued with enthusiastic encouragement for and with each other.

Central PA Ataxia Support Group Virtual Meeting Recap - June 8th

7 people attended the first Central PA Ataxia Support Group Meeting. The group talked about how they have been over the last few months, provided feedback about the NAF webinars that they have attended, and shared feedback about using balanced weighted vests. The group has virtual meeting scheduled every other week on Monday evenings.

Stay connected with our group by joining our Facebook Group: https://www.facebook.com/groups/1475283086068548/.

St. Louis Support Group Meeting Recap - June 13th

Submitted by Shannon Dunphy Lazo

This meeting was just us chatting and getting to see one another, very important that we’ve been stuck inside. We want to make sure that everyone is doing okay and combating any isolation and feeling alone.

 

During the meeting, we discussed several points.

  • Is everyone a member of NAF (National Ataxia Foundation)? It’s free! Receive correspondence newsletters, and the Generations Magazine. Because not everyone has joined NAF, I will continue to re-post all emails on our Facebook page (STL Ataxia). Further thinking: Because a guest might see us on Facebook, I’ll update our FB page with NAF communications.
  • Lori Shogren, our liaison in the NAF Office, attended!
    • She shared info on the various workshops from NAF.
    • NAF still restricting in-person meetings.
      • The NAF Medical Advisory Board recommends this.
      • Depends on easing of orders, possible resurgence, illness and death from COVID-19.
      • Might be through the summer.
    • Many support groups are holding or switching to online events.
    • Good information at the NAF website, ataxia.org.
  • Nick shared with us his important news – he bought a house! Not only that, this morning he was juggling hosting our meeting and moving his stuff.
  • Nick also announced that our meeting was limited to 40 minutes, so we all would have to re-log in. But then we were notified that we were randomly chosen to meet for longer.
  • While we’re at home, people may want to read a number of Facebook pages.
    • Facebook pages: Ataxia and Fitness, National Ataxia Foundation, Ataxia Sucks But We Are Awesome, … and many more.
    • Search at the top after logging in to Facebook. Type in “ataxia.”
  • How do people hold an umbrella and also push a walker/rollator?
    • Wear a raincoat with a hood and get rained on.
    • Duct tape the umbrella.
    • Walker attachments, including umbrellas, are available online.
    • Wear a hat, from a baseball cap to a wide-brimmed gardening or sun hat.
  • Do others get really hot? Does the heat affect you?
    • Tip: cut down on or eliminate caffeine.
  • Can you get to the Katy Trail from New Town?
    • Yes, the Gateway Greenway connects them.
  • Shannon and Dennis are going to try out biking on the Katy Trail.
    • Remember, our recent guest speaker Susan talked about Katy Bike Rental in Defiance, MO.
    • They have adaptive bikes/trikes.
    • The Katy Trail is packed gravel and very flat.
    • If anyone wants to join us for a 3-10 mile ride and lunch, let me know.
    • Anna is in!
  • Update: Beckie
    • She’s going to move to Chicago next year.
    • She fell and hit her head – but the Paramedics were cute.
  • Cindy/Tony and Hank had trouble getting in, that I know of.
  • In the past years, I can no longer sit up straight when in the car/bus/train. I sway back and forth with every bump or turn. Anyone else?
    • No.
    • I need a giant Spill-Not, haha.
  • Mark G’s wife is doing okay.
  • NAF still restricting in-person meetings.
    • The NAF Medical Advisory Board recommends this.
    • Depends on easing of orders, possible resurgence, illness and death from COVID-19.
    • Might be through the summer.
  • BalanceWear Vest:
    • HouseFit, PT in S St Louis, is the only certified “fitter”  in the area. (the vest has weights that need periodic adjusting).
    • HouseFit caters to seniors, but they have told us that STL Ataxia is welcome.
    • Anna and Bob have the BW vest.
  • I need you to send me your pics – any pose, anywhere, with others, with your rollator or wc – be creative!
    • I want to make a collage.
    • I just have 4 pictures, not a very good collage.
    • So far: Hank in a swan, Carol T with flowers/crafts, me with Fred Bird
    • Send pictures to shan_d@hotmail.com.

Stay connected with our group on our Facebook Group: https://www.facebook.com/STL-Ataxia-143643589572491/

Sioux Empire Support Group Meeting Recap - June 13th

Submitted by Mary Beth Farley

We met via zoom on Saturday, June 13. Alyssa Mandel talk to us about the cords registry and what chords is all about. 

Here is the link to the Activation Form if someone is interested in enrolling in CoRDS: https://cordsconnect.sanfordresearch.org/BayaPES/sf/screeningForm?id=SFSFL

Mary Beth let us know that and NAF is running a national fundraiser awareness event and also that there is a summer match challenge going on right now and NAF Well Match., will double any donation in the month of June the website where you can donate online is. October 3 will be the date of the national NAF event via zoom.

Tammy shared some autobiographical information about herself🤓

****Also a reminder that Shirley Jones’ book is out called Remembering the Ride. You can buy it on Amazon. It’s all about her family’s journey with Ataxia.

Kansas City Support Group Recap - June 13th

23 people attended our first virtual meeting! We shared how members have been doing over the last few months. The group also shared gadgets that may help in our daily lives included the PenAgain pen to assist with handwriting and the Spillnot to help with carrying beverages. Our next virtual meeting is on August 8. We will have a guest speaker from the Whole Person which is a local organization that offers a variety of programs and resources.

Stay connected with our group and join our Facebook Group: https://www.facebook.com/groups/208618772974351/.

Kansas City Support Group Recap - June 13th

Submitted by Stephanie Wilkins and Laurie Colby

We went national with our attendance this time so that is a good benefit – Robert Dean from California, Dr. Linda Sydner Sidwell and Mark (Skippy) Sidwell from Nebraska, Carol Tate form our sister ataxia group in St. Louis, and Lori Shogren from NAF Minneapolis. Kansas and Missouri were well represented with the rest of us.

I think we did a great job for our first socially-distanced ZOOM meeting of 2020!  Thank you all for playing along with us.  And a big Thanks to Nan for setting up the meeting so we could stay on longer than the allowed free 40 minutes and to Laurie for the raffle!. Congats to the 4 winners.  A special thank you to Lori Shogren, NAF, for supporting us always and the NAF webinars.  It was great to hear from all of you, and also your helpful hints and aids.

We have a guest speaker from THE WHOLE PERSON for the next meeting, either on July 11th or Aug 8th.

Also, we will have more to share about the NAF National Walk n Roll to be held virtually on Oct 3rd this year.

Watch for the Facebook post and email coming soon to announce the date/time.

Stay connected with our group and join our Facebook Group: https://www.facebook.com/groups/208618772974351/.

New Jersey Support Group Recap - June 15th

11 people joined the first virtual New Jersey Support Group Meeting. It was so much fun getting together again! We plan to continue to meet virtually monthly.

For more information contact Priya Mansukhani at Phone #: 908-342-5675 | Email: priyamans@gmail.com

Chicago Support Group Recap - June 26th

35 people attended out first virtual meeting. Dr. Gomez was our guest speaker and answered many questions from the group. We plan to continue meeting virtually monthly on the last Friday of the month. To join our group mailing list contact Julia Pantoga at Phone #: 414-899-5195 | E-mail: sharpturninstitute@gmail.com.

Treasure Coast Support Group Recap - June 20th

Submitted by Kathi Yule

Lisa Cole opened our Virtual Ataxia Support Group meeting Saturday, June 20, 2020 at 11am. Welcomed comradely started the meeting.

Lisa reviewed many sites and shared YouTube access for helpful and informative information. We reviewed Studies going on, Ataxia Rocks and Did You Know pages. We then introduced ourselves, spoke about our ataxia type and shared tips that help us cope with our difficulties. Some of these tips were:

  • Gain knowledge of Ataxia
  • Be happy daily
  • Do what you can
  • Be as positive as possible
  • Find and enjoy a hobby – Painting rocks activities were shared: directions using acrylic paints, clear spay, and adding your name, where you live and ataxia.org on the back.  This hobby RAISES AWARENESS FOR ATAXIA. 
  • Check out Youtuberock painting 101
  • Other hobbies discussed were coloring and making jewelry.

Lisa introduced Natalie Marnia, a dynamic Yoga Therapist.   Natalie explained various levels of Yoga Instruction including:

*Yoga Instructor- 200 hours or more teaching yoga for people who are in generally good health

*Yoga Teachers- Intelligent application with modification and design for particular student processes

* Yoga Therapist- knowing root causes of human suffering, having a specific health intake, one on one and designing a practice for each client.

Natalie shared her need and benefits for yoga, including hot yoga classes. She continued with explanations of high-stress life, major depressive disorders as well as adverse childhood issues. Her understanding of how thoughts affect our immune system gave everyone insight to the value of positive thinking. She suggested keeping a gratitude journal, adding to it mornings and evenings.

Natalie introduced AHYT; International Association of  Yoga Therapy and the importance of maintaining and developing strength as well as increasing lung capacity,   she has classes on YouTube that can be very beneficial. Principles of functional awareness were given as questions and answers finished her excellent presentation.

Natalie Marnia can be reached at info@smyoga.com.  Her knowledge, insight, positive interactions, sparkles, and concern for healthy mind and body is contagious as well as welcoming.

Lisa will advise us of our next meeting.

Arizona Support Group Recap - June 27th

Our last meeting was on June 27th. We had 22 people in attendance and welcomed new members as well! We were so lucky to have Charlotte DePew who spoke to us about strategies for living with Ataxia. Below are some notes from her talk below. 

Notes from Charlotte’s talk:

Coping: Listen to the dialog in your head. Positive thinking. 

Engage in feel-good activities: Avoid negative shows, content, and people. Get out of the house. Ask others for help. Treat yourself. 

Safety ideas: 

  • Wear shoes with traction
  • Handicap clothing
  • Equipment such as canes, walkers, ramps, stairs
  • Grab bars- get them before you need them
  • Rails, bars
  • Off-set door hinges
  • Keyboards
  • Odor-lock bags
  • No spill cups 
  • Eating out: Ask the kitchen to cut your food into bite size pieces
  • When ordering coffee, ask for half cup so you don’t spill
  • When ordering a drink that comes in a glass with a stem (such a wine), ask for a separate cup that is easier to hold
  • Look into local loaner closets to borrow medical equipment and supplies

Connect with our group through email or Facebook – Support Group Email: ArizonaAtaxia@gmail.com | Facebook Group: https://www.facebook.com/groups/arizonaataxia/

Treasure Coast Support Group Recap - July 11th

Submitted by Kathi Yule

Lisa Cole opened the virtual Treasure Coast Ataxia Support Group meeting at 11:00, Saturday, July 11, 2020.  Greetings were extended and she shared interesting as well as informative websites.  She noted that as we are virtual, anyone anywhere is welcomed to join us.

During this isolation time, she encouraged everyone to enjoy the Virtual Tours, (such as whales), and to visit and experience the various areas that are available to us on Youtube. 

She encouraged us to sign up with CoRDS and assured everyone that our personal information is not shared. Also, NORD states, Alone we are rare: together we are strong.  

Mark Aguilera was our guest speaker.  Mark lives in California and has dealt with Ataxia for 22 years. As with many of us, Mark had a difficult time accepting what was happening to his body.  His primary message is to “live life as well as we can and embrace it.  Focus on a positive attitude and realize your purpose.”  He challenged everyone to understand what Ataxia has given to you.  It takes a while to accept it but non-acceptance hinders us from moving forward. The strength of drawing value from each other was emphasized.  Mark encouraged us to “be a LIGHT to other people”; to feed off each others strengths as we chug along and to each learn our own personal aspects. 

Excellent interaction gave support and ideas to each other. Helpful tips were shared.  

*  accept the help   (many of us want to be so independent}

*  lean on something

*  use a cross-body purse to keep your hands free

*  Wear a carpenters apron so you’ll have a place to put and carry things

*  Be creative and figure out what works for you

*  Be proactive

*  Be detached from adversity

*  Pre-plan and schedule plenty of time so you don’t have to rush 

*  Keep your sense of humor

*  When you fall make it part of the dance.

Laughter and positive interaction ended the meeting.

Tarheel Support Group Recap - July 31st

We had 8 people attend our first virtual group[ meeting. We plan to hold monthly virtual meetings through the end of the year. The group enjoyed catching up with each other and hearing about upcoming events to get involved in. To stay connected with our group join our Facebook Group: https://www.facebook.com/groups/539411309575761/.

Treasure Coast Support Group Recap - August 8th

Treasure Coast Ataxia Support Group and the Annual Florida Ataxia Support Group Meetings were combined on Saturday, August 8, 2020, as Lisa Cole opened an informative, as well as enjoyable, zoom meeting at 11 AM. 

Lisa showed everyone how easy it is to get a multitude of information on various websites she reviewed.  As always, she encourages everyone to be sure to be registered with CoRDs as well as join NORD.  General interaction brought members together and then Lisa introduced our first presenter,

Dr. Subramony , a distinguished neurologist of 30 years,   from the University of Florida.

Dr. Subramony presented several slides about the ongoing research that is currently happening. As there are very diverse groups of ataxia diseases, Dr. Subramony explained a few of their studies.   Often with ataxia, there are problems with the brain stem. He said that probably over half of ataxias we don’t know.  About 10 per 100,000 have this disease. 

A few points he shared were;

*Friedreich Ataxia- it is the most common form of ataxia and The UF research department has clinical studies, using mice, on how FA progresses.

*Spinocerebellar Ataxia – are dominantly inherited as they are transmitted from generation to generation.  He discussed the complex explanation of how this transpires.  They are very close to clinical trials here.

*There are hundreds of recessive ataxias where the genes do not work well and may be candidates for future gene therapy.

*He encourages sample banking for unknown ataxias to find more understanding. Late-onset brain dysfunctions are usually single cell and probably much more treatable.

Dr. Subramony concluded with answering questions and talking about the Ataxia Clinic at UF.  

Our second presenter was Ed Gray, neurologic specialist, and owner/operator

of several Movement Therapy Centers in South Florida. He emphasized how important it is to maintain a level of independence, as well as the importance of finding the right people to help you with neurological treatment. It is all about you and your being treated correctly. Be sure to go to therapists who are one on one. 

Ed emphasized the importance of knowing your limitations and listening to your body.  Nutrition is vital.   Select a neurobase-therapy clinic that includes movement disorders.  Florida Movement Centers are on the East Coast.  

Members asked about recommendations on the west coast and other Florida locations.

Ed answered questions and is available for helping anyone needing help.

The comradely was enjoyed and Lisa closed the meeting.

Treasure Coast Support Group Recap - July 11th

Submitted by Kathi Yule

Lisa Cole opened the virtual Treasure Coast Ataxia Support Group meeting at 11:00, Saturday, July 11, 2020.  Greetings were extended and she shared interesting as well as informative websites.  She noted that as we are virtual, anyone anywhere is welcomed to join us.

During this isolation time, she encouraged everyone to enjoy the Virtual Tours, (such as whales), and to visit and experience the various areas that are available to us on YouTube. 

She encouraged us to sign up with CoRDS and assured everyone that our personal information is not shared. Also, NORD states, Alone we are rare: together we are strong.  

Mark was our guest speaker.  Mark lives in California and has dealt with Ataxia for 22 years. As with many of us, Mark had a difficult time accepting what was happening to his body.  His primary message is to

“Live life as well as we can and embrace it.  Focus on a positive attitude and realize your purpose.”  He challenged everyone to understand what Ataxia has given to you.  It takes a while to accept it but non-acceptance hinders us from moving forward. The strength of drawing value from each other was emphasized.  Mark encouraged us to “be a LIGHT to other people”; to feed off each other’s strengths as we chug along and to each learn our own personal aspects. 

Excellent interaction gave support and ideas to each other. Helpful tips were shared.  

* Accept the help   (many of us want to be so independent}

* Lean on something

* Use a cross-body purse to keep your hands free

* Wear a carpenter’s apron so you’ll have a place to put and carry things

* Be creative and figure out what works for you

* Be proactive

* Be detached from adversity

* Pre-plan and schedule plenty of time so you don’t have to rush 

* Keep your sense of humor

* When you fall make it part of the dance.

Laughter and positive interaction ended the meeting.

Greater Denver Support Group Recap - July 18th

Submitted by Charlotte Depew

We had a great meeting via Zoom last Saturday, July 18, 2020 with over 25 present (screen picture attached).  Those present were from not only Colorado but also Utah, Arizona, S. Dakota, Florida, plus Lori Shogren from NAF in Minneapolis.  After brief introductions of all that were present, Dr. Paula Enrietto spoke about developing the skills and tools needed to remain resilient and fulfilled no matter what the challenge.  She supported her talk with beautiful slides.  Notes of her talk, recorded by Suzanne Walters, and the slides are attached. 

I want to thank Dr. Enrietto for sharing her slides, for giving generously of her time and then offering her contact information if anyone desired to talk further.  Also, thanks to Barb Offenstein for telling me about this speaker and to Suzanne for recording and printing the talk.

To stay in touch with our group join our Join our Facebook Group: https://www.facebook.com/groups/denverataxia2011/.

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