Strength

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AR & DG Meeting Update

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Dear SCA6 Network Members, Our next meeting with Dr. Christopher Gomez will be  on April 8 at 3 pm  hosted by Susan Stiles and the Ataxia Resources and Discussion Group (ARDG) in partnership with the SCA6 Network. The ARDG meets every Monday, but  next Monday  will be particularly special with a post-April Fool's Day joke, celebration of the ARDG 4 year anniversary, and discussion about next steps related to the recent publication by Dr. Gomez and Hannah Casey describing the findings from the SCA6 Network questionnaire. The analysis of your responses from the last survey helped answer some questions, but created some new ones.  Please also feel free to ask questions, particularly research-related ones, during the meeting. Susan will be watching the chat box  for questions. Please copy and paste the meeting link below into your calendars.  Note you may join by phone or e-mail, the time is EST and can be converted to other times with a Google s...
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Vision tips

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  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...
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