Self-care poll

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Research update 7/24

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  Dr. Gomez, Hannah Casey, and his Team are making great progress with the electronic questionnaire. They have submitted their plan for this to their Institutional Review Board for approval. It can take some time to satisfy all reviewer questions but it is a good milestone to have submitted their plan to them. This electronic questionnaire will include people with SCA6 or SCA27B, a newly identified form of ataxia with symptoms similar to SCA6. This is smart because it allows for comparison of the comprehensive responses for each group to allow for a better understanding of the similarities and differences between these 2 ataxia types. We will let you know when it becomes available.  I know many of you are interested in hearing about the SCA6 research in Dr. GOmez's lab. I see a new publication titled: " Digital Measures of Postural Sway Quantify Balance Deficits in Spinocerebellar Ataxia" https://pubmed.ncbi.nlm.nih.gov/38357985/ I know we all are looking f...
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Sadness

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  You might think, from these postings, that I have the greatest ataxia attitude ever.  But I have my days.  Today I can’t stop crying. This is an incredibly difficult thing to deal with.  Everyone with ataxia (unless they’re in complete denial) has days like this.  Today all my advice about meditation and exercise is out the window.  It’s a grieving day. Some of you may have gotten annoyed with my happy talk.  Please read my posts on Rage, Suicide, Depression.  Happy talk?  As Sheryl Crow said, “No one said this would be easy.” I have no advice for days like this.  They happen.  I just need to ride this out.  I bought black-out shades for my room so I’m going to my dark hole.
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Depression with update 7/24

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 When I started this, the world was a different place.  I now think I am clinically depressed and am seeing a psychiatrist next month.  This last year, along with the daily struggles of ataxia, my husband lost his job, I sold my house (along with my therapy pool and house bound water view), my service dog and baby sister died within three days, I am not sleeping, eating is touch and go (I have lost 35 pounds).  I have lost motivation to exercise, my son has become very symptomatic this year.  I have hit a wall and  need help.  Every day stressors do not skip those with ataxia. I believe that just about everyone diagnosed with ataxia has struggled with depression.  It is critically important that differentiations be made between depression, sadness and anxiety.  It is recommended that you consult with a professional if you suspect depression.  Self-diagnosis will only take you so far.   This post is more in support and normaliz...
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