Ataxia

 Happy New Year 🥂🫶! What better way than to hear from Dr. Gomez Dear Members, Dr. Gomez shared with me the good news that the questionnaire manuscript describing ""Early-life social determinants of SCA6 age at onset, severity, and progression" has been accepted to the journal 'Cerebellum.'  Thank you to those who  Dear Members, It is with great pleasure that I share with you the report on the SCA6 questionnaire that many of you participated in. Thank you to those of you who participated in this effort! This is just the beginning and I will let you know when an electronic version is ready; Dr. Gomez and Hannah Casey are hard at work on designing the next one.  Also one of our members shared that he recently had an eye procedure to tighten the muscles around his eyes to reduce the double vision and that it worked quite well. I added this to the top of the eye exercises I've shared in the past from Elizabeth Foss. A couple other of our members have...

  As if this disease wasn’t hideous enough, it’s carried on an autosomal dominant gene.  You all know what that means.  Your offspring have a 50% chance of developing ataxia. My mother specialized in guilt even though it wasn’t even her gene! I find guilt to be useless.  It’s not as if I did this on purpose. My mother was a piece of work. She actually said to me (once drunk once sober so I knew she meant it) that she doesn’t come by more to visit because she can’t stand to see me the way I am. Can you imagine a mother saying that to her daughter???  Can anyone say self-esteem?  Am I defective- your brain-damaged Ph.D. daughter? Can you tell I have some feelings about this?  I asked her if this happens to my son, should I not see him??? Here’s my genetic story.  There are two ages of onset in my family.  One is the mid-fifties and one in early-forties and earlier (me).  When I got pregnant with  Chris, my grandmother was not yet diag...

  You must get so sick of me harping on exercise.  I do BECAUSE IT WORKS!!! There are ataxia-specific exercises on YouTube.  I watched one this morning that emphasizes strengthening the core.  You don’t realize how much you use those muscles until you can’t. About 15 years ago, I fell and broke my ribs.  I could do nothing for weeks.  As soon as I could, I worked on my core. Please, please, please watch these videos.  They’re probably not all for you so you can design your own program!

                                     I lost both my baby sister  and my service dog, Dasher within 72 hours. Dasher was sudden and unexpected. Stephanie lost a long battle with lung cancer. Words cannot describe the depth of grief. And grief is weird.  One second you’re fine and going on with your day. And the next second, you’re mush. In the midst of this, my husband lost his job, we are moving off the beach, and ataxia. Sometimes life just sucks.

  https://youtu.be/oXuQPY-oDGE?si