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Crisis

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 I took a very bad fall on Valentines Day. Worst ever.  Three days in the hospital.  Surgery.  Bed pans.  Broken back.  Excruciating pain.  Two months of living in my bed.  Horrible. I was so depressed at some point I couldn’t look at or smell food.  One week of no eating.  Best diet EVER.  Twenty pounds gone.  I would have committed suicide but I didn’t have enough Ambien to do the job nor the courage to use another method. I screamed in pain all the way home from the hospital.  I could not sit up for 2 months. I screamed that life with ataxia was hard enough.  Now this? My message today:  shit happens.  You WILL get through it even when you believe, like I did, that you’ll never get better, you will. My husband (to whom I will be forever grateful for the bedpans etc.) kept telling me I was getting better.  I dismissed him.  I am sorry. Ataxia doesn’t protect you from disaster.  It prepares y...
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Dr. Gomez update

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Dear SCA6 Network Members, Good news! Dr. Gomez, Hannah, and his lab Team submitted a manuscript to the journal Neurology describing the results of the SCA6 and SCA27b electronic surveys and it is now formally accepted! As many of you know, Dr. Gomez has learned from the survey that environmental factors do not seem to explain all the differences in age of onset and severity and he suspects there may be additional genetic factors that contribute. He is collaborating with Dr. Luis Almaguer-Mederos in England to have DNA samples from people with SCA6 sequenced comprehensively to identify other genetic changes that may contribute to symptom onset and progression.  Dr. GOmez and I are planning our next meeting  on June 5th at noon Eastern standard time  and  9 am  west coast and other times in between. We're looking forward to seeing you and I'll send a reminder next week. One of our members might even ask about 'exoskeletons' for human...
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SCA group update

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Hello,  This is just a reminder that we will be meeting with Dr. Gomez  htis  Friday  Feb. 6th at 10:30 am EST  ( 9:30 am CST ). This is mainly for an update on Dr. Gomez's research but If you have any questions you would like to ask him, please send to me so I cna compile them for him. Best wishes, Terry Theresa Boyle is inviting you to a scheduled Zoom meeting. Join Zoom Meeting https://us02web.zoom.us/j/88072979919 Meeting ID: 880 7297 9919 --- One tap mobile +13052241968,,88072979919#  US +13092053325,,88072979919#  US Join instructions https://us02web.zoom.us/meetings/88072979919/invitations?signature=aJCKoY2Y8trrpIU5zFmiVkUjUnWxjdR0BnJHg3hWtXQ Recent Gomez lab publications (to read them, click on the title to get to the clickable link to Pubmed):   Pre-Frontal Cortical Activity During Gait is Altered in Pre-Manifest and Early Spinocerebellar Ataxia. Mancini M, Silva-Batista C, Shah VV, Horak FB, Carlson-Kuhta P, Safarpour D,  Gomez CM. ...
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Update meeting with Dr. Gomez

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Dear SCA6 Network Members, I would like to invite you to attend a follow up meeting  on Friday October 24th  with Dr. Gomez as discussed at our last meeting to talk more about the logistics of performing a genome wide association study (GWAS) for SCA6. His colleague in England is conducting this study and it is designed to analyze DNA from people with SCA6 to better understand genetic modifiers beyond the CACNA1A gene that might alter risk for disease onset, symptoms, and severity. Please see the meeting link below and otherwise instructions are the same as last time to join. I also wanted to share this link to an incredibly motivational video that was shared with me by Robert Dean as the culmination of a creative project involving many members of our sister group the Ataxia Resources and Discussion Group. You may recognize some of the courageous people in this videa. It certainly inspired to get up and get moving.  https://www.youtube.com/watch?v=c0uvVySQ_5o&t=43s Be...
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Surgery for double vision?

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 Have any of you had this? The eye is controlled by six muscles.  Those of you with ataxia have problems with coordination of muscles.  Did you think it was restricted to limbs?  Those of us with extreme double vision have problems with coordination of the muscles as well. I’m beginning to explore the possibility of this surgery.  Do any of you have experience with this?
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