Ataxia

Members, Hello and I hope you all are doing well. I'm just back from a wonderful vacation near Helen, Georgia with beautiful waterfalls in every direction and a stop by Silver Springs FL state park on the way home for an amazing glass bottom boat ride. We saw lots of fish, sea turtles, a new emerging 'popcorn' spring, an ancient sunken dugout canoe, and a manatee through the clear glass bottom in just a 30 minute tour. Totally recommend this if you are in the Tampa area and have some time; easy walk on and off the boat and tranquil waters so anyone can go and have a wonderful time.  The reason for my e-mail though: Please save the date on your calendars because Susan Stiles, leader of the Ataxia Resources and Discussion Group (AD&DG, flyer for her weekly Zoom discussion attached) will be hosting Dr. Chris Gomez  on April 8th at 3 pm EST by Zoom to discuss his recent publication with Hannah Casey and others (including me) titled:  Early-Life Social ...

  Dear Members, I wish you an early Happy Valentine's Day! I also wanted to pass along information about a phone tool and a few ideas and article links shared by members with me. I like to collect a few 'goodies' at a time before passing them along.  Talking Phone tool:  People with an ios 17 updated  iPhone can go to 'Accessibility', then 'Settings', scroll down to the "Speech" section and record their voices. Once the recording process is completed to teach the phone your voice, you can type a phrase into your phone and have your phone speak for you. This member wrote: " I am hopeful that the tool will improve. It sounds like my voice, but the pace and modulation of the speech aren't quite right yet." Recipes:  One of my members asked me about good recipes for meals that are delicious and easy to eat, but I don't think I've asked about this before. We've shared tips about  good posture,  double swallowing, chin tucking, ...

 

  In case this may help, the following are the best SCA6 vision suggestions I have discovered to date: •  Find an  OT   who can & will “think outside the square” for potential solutions.  (Age alone won’t necessarily indicate OT effectiveness); •  Practice eye focus using a  Red Laser-Beam Cat Toy   as therapy (designed to increase eye-muscle control); •  Get optometrist to add  Prisms  (for reading glass prescriptions  only ) & avoid Bifocals; •  Depend on a   Walker   not just for balance & mobility, but also for visual assistance; •  Avoid unfamiliar situations   & where there are a lot of people with constant movement & noise (supermarkets, malls, traffic, etc); •  Keep  Gaze ahead   & limit head movement as much as possible.   I recently had eye surgery at Mass General in Boston to correct double vision caused by my ataxia. The doctor tightened certa...

  Enjoy our 2024 CoRDS Winter Newsletter!   To register for the 14 th  Annual Great Plains Rare Disease Summit please select the link below:   Registration link:  https://app.smartsheet.com/b/form/02776001c2d84f02b0c3118aea6e52cc   To login to your new online portal please select the link below and follow the instructions:   Online Portal:  https://cords.sanfordresearch.org       Best Regards, The CoRDS Team Sanford Research 2301 E 60 th  Street N Sioux Falls, SD 57104 Toll-free:  (877) 658-9192     ----------------------------------------------------------------------- Confidentiality Notice: This e-mail message, including any attachments,  is for the sole use of the intended recipient(s) and may contain privileged and confidential information. Any unauthorized review, use, disclosure or distribution is prohibited. If you are not the intended recipient, please contact the sender by reply e-mail and destroy ...