Ataxia

  Dear SCA6 Network Members and Researchers, This is another reminder about our meeting scheduled for  this Friday, October 2nd, at 11:30 am  US Daylight savings,  10:30 am Central ,  9:30 am Mountain , and  8:30 am pacific time . I'm especially sending this 2nd reminder becasue I previously wrote 'standard' time and an astute member pointed out that we are on  daylight savings time . If you are around the world, this is important if you are not on daylight savings time. Please convert  11:30 am  DST or daylight time OR Tampa, FL, US as city, state, country to your location's time with a Google time convertor. I also will try to record for those unable to attend.  We have a full agenda and 13 questions. If we don't get to all the questions, I can send answers from Dr. Gomez afterwards. I look forward to seeign you tomorrow if you can make it. Best wishes, Terry Agenda: 1. update on progress with the collaborative comprehen...

Thank you Mr Secretary  Concerning Social Security payments, my contributions were made for over 45 years on every salary I received. Those jobs may not have always been the work I wanted to be doing at the time,  BUT I always had a job. The Social Security check is now (or soon will be) referred to as a "Federal Benefit Payment?" I'll be part of the one percent to forward this. I am forwarding it because it touches a nerve in me, and I hope it will in you. Please keep passing it on until everyone in our country has read it. The government is now referring to our Social Security checks as a "Federal Benefit Payment." This isn't a benefit. It is our money paid out of our earned income! Not only did we all contribute to Social Security but our employers did too. It totaled 15% of our income before taxes. Congress took our money and used it elsewhere. They forgot (oh yes, they knew) that it was OUR money they were taking. They didn't have a referendum to as...

 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...

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...