Ataxia and me website

-

 I found this website helpful.


ataxia and me.org



Comments

Post a Comment

Popular posts from this blog

Ataxia Expert PT Videos

-
Hi SCA6 Network members, I hope you all are well. I just received the below message from Dr. Tom Clouse who some of you may know. He has uploaded his exercise videos onto YouTube and is offering them for free. I live in FL with him and had the opportunity to discuss his book (Reclaiming Natural Movement) with him over lunch and later bought his book. He has an incredible and, to me, impressive, personal story of endurance, hope and activism. My knowledge about what exercises, physicla therapy work best are limited and I think Dr. Gomez has recommended things like yoga, tai chi or whatever keeps you going. The neat thing is that what Dr. Clouse has figured out seems to have worked for himself and he has also helped others, but it does require effort and I'm not going to go as far as saying that i know whether it works better than other things you might be doing. I am passing it along so you can try for yourself and see if it it helps you in any way. Even if it inspires you to keep d...
Read more

Research update 7/24

-
  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...
Read more

Memories

-
Image
 One of my favorite Christmas gifts was a service that digitizes your old photos or videos to the format of your choice.  I sent pictures and had them put on DVD so I could import the photos into my library. A big challenge (unless you have unlimited funds) is choosing which photos to send.  That required going through photo albums that I haven’t looked at in forever. Lots of those pictures were from my pre-ataxia days.  Pictures of me skiing.  Pictures of me working.   Pictures of a whole different life. I grieve the loss of that life.  (Sidebar:  I used to be sadder at the loss of my teaching career.  But I live in Florida, the epicenter of telling teachers what they can say.  I taught at the college level and used to have a post-surgical trans woman come in to speak and answer questions.  No grooming.  Just information.  I could not do that today.  I don’t miss teaching.) Ataxia is a THIEF!  And it SUCKS! I am...
Read more