Ataxia support groups continued to meet virtually during the pandemic. Find upcoming support group meetings at www.ataxia.org/events. Feel free to join a group outside of your area/state! Here are the most recent recaps.
Treasure Coast Ataxia Support Group Meeting Recap - September 12
Submitted by Kathi Yule
Our guest speaker was Sharon Veingrad, devoted educator and instructor of the Ageless Grace program. Sharon explained Ageless Grace as a brain-body program that stimulates the body as well as the brain. There are 21 different exercises that enhance the neoplasticity of the brain. It challenges the mind-body connection and is done in a chair, which in itself is new to the brain.
Ageless Grace provokes happiness with challenges. There is no regular routine as music and movement lift the connections needed.
Sharon followed her explanation with several exercises which everyone could participate in. Her classes are available to all and she will be happy to send you the weekly link when you send her your email address. Her email is email@example.com. She is available for questions at 954-270-3385.
Following our speaker, Lisa provided break out rooms, where 3-4 participants became better acquainted and had their personal interactions. There was a very positive reaction to this.
People introduced themselves and their location. The meeting was adjourned shortly after 1 PM
St. Louis Ataxia Support Group Meeting Recap - October 10th
Submitted by Shannon Dunphy Lazo
Welcome one and all, and I am glad you all were able to join the meeting on Saturday. A reminder to those who couldn’t be there: the Zoom platform is an excellent way to attend without having to worry about transportation, getting around, wearing pants (haha) …
During this pandemic, being able to meet on Zoom is the best alternative we have for us and our loved ones to stay safe. At least into the spring, we’ll comply with guidelines and the NAF ban on in-person meetings.
Remember our Mission Statement:
The mission of the St Louis Ataxia Support Group is to support and meet the needs of the St Louis-area Ataxia community, through education and awareness, fundraising for research, social support, and sharing and learning tips and strategies for coping with Ataxia.
Carol T asked each person to choose a number between 1 and 20, no repeats. (For a later raffle drawing)
Special welcome to Ed Schwartz, our “guest speaker!”
He shares an Ataxia video with us – What Your Family Needs to Know About Ataxia.
Ataxia Awareness video:
- The late Ed Schwartz talks about Ataxia, his diagnosis, and upcoming events in his community
- This YouTube video is the 1st of 3 parts of his Ataxia awareness effort
- We listened to his video together, and it can be found at https://www.bing.com/videos/search?q=What+Your+Family+Needs+to+Know+About+Ataxia&docid=608050052370991563&mid=495A0BCB43CA9F2CA6B6495A0BCB43CA9F2CA6B6&view=detail&FORM=VIRE
- FYI – Ed’s 2nd video, The Classifications of Different Types of Ataxia and the Most Significant Impacts, is at https://www.youtube.com/watch?v=3J8KjZVNtOA&feature=emb_rel_pause
- FYI – Ed’s 3rd video, The Impact on Ed Schwartz’s Life & Other Ataxia Issues, is at https://www.youtube.com/watch?v=tUxCdCejcxw
- YouTube has hundreds of Ataxia videos on many subjects: gait, physical therapy, Episodic Ataxia, Ataxia in children and teenagers, Acquired Ataxia, and much more!
- To search for these videos, go to www.youtube.com and type ‘Ataxia’ in the search. Then click on any video you want
- Anyone can listen to another video on their own or as a group like we did on Saturday. Let me know if you’d like to listen to a video again together on Zoom.
- NAF also has a number of videos at https://ataxiadev.wpengine.com/webinars/
- Ataxian Fred Finch, The Shaky Chef, has a number of videos https://www.facebook.com/TheShakyChef
- And many more!
Carol T and Bill drew numbers for the drawing for scratch-off lottery tickets. Carol M, Nick, Dennis, and Art won! Carol T will mail the scratch-offs to the winners. Good luck!
Update on the Virtual Walk and Roll: we met our goal, raising $2,223.23. Thanks to those who donated, and to you who sent out requests to friends and family.
Several people said what kind of guest speaker they’d like to invite: people to talk about Medicare options, medical equipment and DME, Caption Call phones, local resources, mobility issues, and medical research. Upcoming: a tax professional (non-profit), a MO Falls Prevention speaker, Dr Gomez, the St Louis Office on the Disabled, HouseFit (BalanceWear vest), and a staffer for Sen. Blunt.
We also mentioned current or former professions. Of those present, Mark J and Nick are currently working. Mark J is a program manager at Scott AFB, and Nick is a beer guy. We also have a former flight attendant, a medical transcriptionist, a dentist, an agronomist, and an engineer in our midst. Mark J and Bill are vets.
We brainstormed ideas for fundraising on a small level – it all adds up! We have several members who raised money here and there, selling a few things at a friend’s garage sale and selling the rubber Ataxia bracelets. Other ideas were to donate the money from surveys or studies, eat at restaurants that’ll give us a portion of the profits, and buy things via Amazon Smile (instead of Amazon). Choose the National Ataxia Foundation as the recipient. Dennis’ daughter-in-law might have a list of restaurants that will donate for us to work from.
Dennis and Shannon have ridden bikes on the Katy Trail these past few weeks. After our February guest speaker from the Recreation Council, Shannon called the Katy Bike Shop in Defiance, MO, and rented a 3-wheel bike/trike. If others would like to do a bike ride as a group outing next year, Shannon can work with the Recreation Council to get more bikes (The Katy Bike Shop only has 3 adaptive bikes, but a disabled neighbor of hers did a group ride once with the Recreation Council, so it can be done).
Leslie, the graphic designer of our logo, had a baby boy this past week!
The garage/yard sale idea was one to expand on, that we can do as a group sometime next year. Everyone: start saving items to sell to raise money. Think about pricing too.
Greater Denver Ataxia Support Group Meeting Recap - October 17th
Submitted by Charlotte DePew
The Greater Denver Ataxia Support Group met via Zoom on Saturday, October 17, 2020 with twelve present. We had a social introductory period followed by our speaker, Allison Hilger, PhD, CCC-SLP, Speech Language Pathologist, Assistant Professor University of Colorado Boulder.
Dr. Hilger spent most of her time talking about speech therapy and including what she learned through her research. She feels Ataxia speech does not have a deficit in muscle strength of speech, rather the issue is coordination particularly in breath control. Her slides described it well.
She gave us contact information if members are interested in being research subjects and/or speech therapy by students under professor supervision for a nominal fee. Both are amenable to virtual measures rather than in person.
The next quarterly meeting will be January 16, 2021 at 1:00 pm via zoom with a speaker (TBA).
Treasure Coast Ataxia Support Group Meeting Recap - October 20th
Submitted by Kathi Yule
Lisa shared various websites and Webinars readily available. She also shared:
* The Virtual Walk n’ Roll Event continues until the end of October.
*Awareness continuation with Flat Ataxia Rocks. Take a picture of the Flat Ataxia Rock and send it on as well as you scatter your personal rocks wherever you go.
Jessica Oberlin was our guest speaker. Jessica is from Columbus, Ohio, and has SCA#3. She is and has been involved with various studies. She’ll do anything to stop this terrible disease.
Jessica discussed Family Planning and the value of genetic testing, as well as other options available. She emphasized the importance, as well as the value, of helping our children understand Ataxia and all of the implications involved.
Jessica has endured the long, difficult, amazing, and expensive process of stopping Ataxia with herself, so her children are Ataxia free. She emphasized that it is an individual decision and other options are available, such as adoption and egg donors. It is very comforting knowing we are not alone as well as the importance of sharing our experiences. The decisions are difficult as there is no guarantee and the choices are difficult.
Jessica is very willing to encourage, share, and support all involved. Thank you, Jessica, for your presentation.
Zoom has opened us to so many possibilities to learn more, interact with people from all over, and to share information and tips that have been beneficial.
NAF is a terrific resource especially as 15-20 years ago there was very little information available. Each of us in the “Ataxia Boat” has such a variety of symptoms, some genetic, others not, and gain insight as well as hope as support is shared.
YouTube also has numerous beneficial videos that are beneficial. One of which is Ataxia and Balance Disorders which discusses damage to the cerebellum.
Participants shared enthusiasm and our meeting concluded.
Treasure Coast Ataxia Support Group Meeting Recap - November 7th
Submitted by Kathi Yule
After friendly greetings as people logged in, Lisa Cole started the November 7, 2020 meeting of Treasure Coast Ataxia group meeting shortly after 11 am.
Robert shared many of his varied backgrounds with background music.
Lisa asked that each person send her photos of things they used to do. Send them to firstname.lastname@example.org Our Dec 5 meeting will be sharing activities that we enjoyed. For example, Lisa’s interest and participation in Motocross. It will be a fun time for all.
Lisa shared websites and other sources for our education and understanding of Ataxia. She also discussed where to find out about brain donation for further and better-detailed information for research. Lisa emphasizes the easiness of enjoying virtual tours. Also, the Did You Know page on Facebook is always available.
Lisa will have a table at the 420 Festival on November 8 in Port St. Lucie. She will be masked for sure.
TV episodes that include Ataxia subjects are available. Good Witch, Sec 3 Ep 11 and Bill Nye, the science guy, and Cake Eaters (a movie) are available.
A short video explained that Ataxia means without order, sluggish motor control amount and much more. There is no cure. Researchers are finding ways to slow down the process. Symptoms are progressive as well as debilitating. Many types of Ataxia have not yet been recognized nor named.
Members introduced themselves and noted their diagnoses. Then tips that have been helpful were shared. Among those were:
*Using a weighted blanket
*using applesauce to get pills down
*balanced weighted vest (which is prescription for specific use)
*using a small, over the neck, pack for phone and other necessities.
*always feels secure with needs easily available
*always remember to 1) stand-stop before moving and 2) nose over toes walking
*use of chair with wheels to work in the kitchen
*exercise brain, body yoga
*be around people to help mental state
We broke out in Break Out Rooms for fifteen minutes, and then came together for questions and announcements.
Remember to send a picture to Lisa of yourself with your past interests.
Zoom meetings are bi-monthly at 11 and 2. However, once a month there will be a speaker.
St. Louis Ataxia Support Group Meeting Recap - November 14th
Submitted by Shannon Dunphy Lazo
Welcome one and all, and I am glad you were able to join our meeting on Saturday. I must apologize for the technical difficulties. I checked the Zoom website later, and there was an alert that severe weather was causing delays and problems. Thanks for persevering.
To those who were not able to attend: remember that Zoom is an excellent way to attend without having to worry about commuting/transportation, getting around, and planning. Meeting virtually is the best alternative right now to keep us and our loved ones safe. Fight Zoom fatigue!
Everyone was asked in our introductions: what are your challenges with getting around (St Louis)? We had a variety of comments: I fall daily, doesn‘t like to leave home, I use a Life Glider, I use 2 canes and sometimes a scooter, take HouseFit classes for balance and strength, I use a rollator, the sidewalks are so uneven, curbs are obstacles …
Special welcome to David Newburger, our guest speaker! He is the Commissioner of the St Louis Office on the Disabled.
- David uses a wheelchair from polio.
- His office of 4 deals with ADA (Americans with Disabilities Act) accessibility projects such as public spaces, public restrooms, sidewalks, and housing.
- They work with the Affordable Housing Commission of the City of St Louis.
- Currently, Federal rules require the City to make sure that at least 5% of its housing units it is creating meet accessibility design standards – ideally 100%.
- The ADA, the Americans with Disabilities Act, is at https://www.dol.gov/general/topic/disability/ada.
- His counterpart in St Louis County, at the County Disability Advisory Board, is Sheryl Rose, at email@example.com and 314-603-2456.
- They recently advised the design of the Gateway Arch Museum.
- Currently, they are surveying residents and those who spend time in St Louis to develop a Transition Plan for the City.
- The Plan will be for the City to eliminate physical and programmatic barriers to access for members of the community.
- Please take this survey, at https://www.surveymonkey.com/r/stladasurvey.
- David and his office also advise the Brickline Greenway, a trail in the Great Rivers Greenway.
- Ataxia and the St Louis Ataxia Support Group are represented on their disability advisory group by Shannon.
- Their goal is to allow all citizens to fully integrate.
- The Missouri Foundation for Health does a lot for disability and access.
- There are 2K miles of sidewalks in St Louis.
- Recently they worked with the hockey arena, including a stair climber.
- Planning of the new MLS (soccer) stadium, but not the inside.
- Needs universal design features like restroom stalls and toilets.
- For example, placement of toilets both on the right and on the left so one can transfer from whichever side.
- Hank was at the Arch with his wife Mary. Someone almost ran him over. Hank fell, and he pulled Mary down too. The people in the Arch didn’t have a first aid kit.
- Another member told us about a steep slope.
- Shannon mentioned that the Cabanne Public Library is completely non-accessible – she couldn’t get in! By contrast, the Schlafly Library is great and very accessible. It has a flat entryway and large print books. It also has electric door openers at the main entrance. Unfortunately, the bathroom door is unwieldly and there is no door opener. (And the security guard, usually male, although close by can’t hold the womens’ bathroom door open.)
We discussed the wallet card, briefly. We have two examples of wallet cards from other SGs. NAF has one too. We’d like to have business-type cards that we can give to interested persons and friends, explaining Ataxia on one side and our logo on the other side. It’s also handy to show to bouncers or law enforcement if challenged.
I am excited that Mark G and Naomi volunteered with two new parts of our meetings!
- In December, Mark G is going to tell us more about himself in the MEMBER PROFILE Who is Mark? What’s his story?
- Each month, we will hear from another member to help us know each other better.
- The member might talk about her initial diagnosis, how old he was, did she find a good neuro, what mobility aids does he use, how did she find out about our support group, who is in his family, what was/is her profession, …
- It’s quite informal and no prep is needed.
- Naomi will help us with a SHOW-AND-TELL segment and show off and explain her new Life Glider. Is it a rollator?
- At every meeting, someone will show the group something – a gadget or scooter or something to put shoes on or a utensil holder, etc. – that makes life easier.
- Now that we are meeting virtually, it’s a good time to show something large or installed that you can’t take to an in-person meeting. For example, you can show your bed or wheelchair van or exercise equipment. A photo of you using _____ would work too.
- We also want to support ALL members, Ataxians and friends and family alike, and we know that some aids are good for all of us.
We still need another volunteer to collect/take photos of different activities and meetings and create a scrapbook. Can you do this?
Last month, we discussed that some area restaurants will donate to charities, giving a percentage of their proceeds (or something similar). Dennis’ daughter-in-law gave us a list of restaurants in and around Kirkwood. Please help me add to that list – send me names of other restaurants in the Metro, both east and west. Even better, can one of you volunteer to collect/keep that info? When we resume in-person events (whenever that’ll be), maybe we can make it an outing or convene for lunch after our 2nd Saturday meeting.
Dennis and Shannon are exploring accessible and/or paved hiking trails. If you have any suggestions or recommendations of trails, let her know. Shannon will keep a log of her explorations and report back to the group.
Also, remember that Hank graciously offered to host us at his cabin (in Lake of the Ozarks?) later, when the COVID risk is down. We could all use some forest bathing (taking in nature/ the forest atmosphere, from the Japanese shinrin-yoku).
Our guest speaker for December 12 is likely Dr Christopher Gomez from the University of Chicago Department of Neurology. (We’re still confirming.) He is a very special guest and very knowledgeable, so everyone should mark their calendars!
Central Indiana Ataxia Support Group Meeting Recap - November 14th
Submitted by Amy Draves
THANKS to Teresa for putting the zoom call together. Also many thanks to Chris for arranging our guest speaker. I really wish more of you could join us. I am fairly confident that our February meeting will also be virtual.
Our guest speaker was Karen Matthews…a clinical social worker.
Before Linda joined us, we talked a lot about rollators and the safety they give us. A major point we all agreed on was that we all had to swallow our pride when we realized that our safety was more important than the embarrassment of having to use an assistive device. It has been hard for each of us to take the step to rely on a walker/rollator. If any of you are struggling with whether you use one or not, keep your safety be the main reason to do this. A broken bone is something an Ataxian doesn’t need.
Karen joined us at 10:30. She is a social worker at IU’S Neuroscience Center in Indy.
Karen stated that one of the most important things that we can do is to be adaptable within our abilities. She said that small steps to attain the goal, which is a lot of work. As you explore the goals you hope to achieve, collaborate with people you trust who are critical thinkers, empathetic, and problem solvers. Be sure to include your physician as a collaborator too.
When we have questions, be sure to ask others who are in the same predicament as you are. Our support group is a prime example of where you can go. Please feel free to contact each other, and if we don’t have an answer, we can try to find one. Also, NAF is a wonderful source of help. They have so many resources.
Independence at home…There are so many agencies that can help us. Home Instead is an example.
If you need help with maintaining your home, perhaps someone to help with light housekeeping or a lawn service.
There is a large continuum of care available – Independent living, Nursing Home – Short- or Long-term care, Memory Care. Many care-centers have all of these options within their systems. An example of this is TRILOGY. A new concept which is an alternative to facility care called “Story Cottage”. There is only one of these in the Indy area. This concept is a house that has rooms that are around a central area.
Legal/End of life decisions … Don’t wait to get POA’s for financial and health. Do this now!!!
One very important thing Karen said is that we need to find a good ELDER CARE ATTORNEY!!! They can be expensive, so do your homework BEFORE going to appointment. Ask others if they have an E.C. Attorney that they like. Be sure that these documents are NOTARIZED!
You can download forms such as POA’s, Living Will, Life Prolonging Declarations from “Indiana State Ad. Directive Link”. This link is found on the page of resources that I already sent you.
HOSPICE: you can unenroll if things change, but be sure to reinstate your doctors, insurance etc. If you do this, be sure it is the best decision for you.
Finances – As a couple, you may have finances you want to protect for a surviving spouse to live on. “The MILLER TRUST” is a concept that you make a loan to a trusted family member. They would make monthly payment to you and thus protect your money.
Make sure that your kids know everything…finances, and decisions for end-of-life stuff. Explore options about donating your body/brain to research. Most times after the study is complete, the body is cremated and returned to the family.
If your neurologist is not familiar with Ataxia, Dr. Sauber at IU Neuro-center is very knowledgeable about Ataxia. Also University of Michigan has an Ataxia Clinic that many of us also go to. If you go to a physical therapist be sure they are skilled with neuro diseases.
Treasure Coast Ataxia Support Group Meeting Recap - November 21st
Submitted by Kathi Yule
Lisa Cole opened the TREASURE COAST ATAXIA SUPPORT GROUP meeting on Saturday, November 21, 2020, at 11 am.
Quickly we learned we had a father of an Ataxian joining the meeting from Egypt! He is searching for any information that would benefit his daughter.
Lisa shared her screen and went over many websites, including SCA Source.net, NCBI, clinicaltrials.gov, READISCA, and the National Institute of Health, CORDS, NAF as well as showing how to view all past webinars and brain donation. Relaxation is available thru, among others, the Georgia Aquarium and various travel sites.
Our Ataxia Rock (Flat Ataxia) is a traveling “friend” and is presently secure with Lisa. Sign up to get it on Facebook in the group Ataxia Rocks!! and then pass it on.
Group participants introduced themselves and Breakout Rooms were assigned. Fifteen minutes later, Lisa brought the meeting together again to respond to any questions or ideas.
Chicago Ataxia Support Group Meeting Recap
Submitted by Julia Pantoga
We had a very engaged support group meeting yesterday. To those of you who missed it — we missed you!
Using Zoom’s breakout groups, we did an activity that one of our members introduced us to. During Show and Tell, we got so many great tips from each other, Zoom is especially great for Show and Tell because we can show things that we couldn’t possibly bring to meetings. We talked through an inquiry from one of our members about a legal issue. None of us are lawyers, but we gave her ideas of where she could find appropriate counsel.
Another great thing about Zoom is that we can meet people who live anywhere in the world. Yesterday we had a couple people from the east coast, a couple from the west coast, and the rest from this area.
As we go into 2021, we revisited the day and time of our meetings. We agreed that 2:00 Central time was good because it is a reasonable time for other time zones. The day works too, as most of us are no longer working outside the home and I (Julia) like weekdays because it is easier to find speakers and locations (when we meet live again).
We also talked about topics for next year. I (Julia) have a list of topics I’ve seen work with other groups, but I’m always trying to find out what our members want. One of the interesting suggestions was to have people who live in different cities give us “boots on the ground” information about getting around in a wheelchair. I’m definitely going to try to organize that while we are meeting remotely and have people from so many cities joining us! Let me know if you want to make a presentation.
As many of you know, I have those of you at the meeting read the guidelines every time we meet. This gets everyone talking (unless they pass) and sets a nice “chatty” tone for our meetings. To my surprise, some regular attenders noted that family members notice that they speak better after our meetings, because they are forced to try to speak clearly for the rest of us. Other helps to clearer speaking are dictation and Alexa commands. What a great unintended consequence!
Let me know if you want off this list or if you have any feedback for me about our meetings. We’ll meet next (remotely) on Tuesday, December 29 at 2p central time (the Friday we usually meet is a holiday). We will have a speaker who writes extensively about travelling with a disability. Hope to see you there!
Other Support Group News
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