Living with Ataxia

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Scott Orn
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  • San Francisco, CA
  • United States
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on Friday
I am dealing with some sort of ataxia related to torticollis which I have had all my life and I think it may be ocular torticollis because I remember seeing double and holding my head different to see normal. I got glasses at age 10 and was told to…
February 2
Kati, yes of course I'll ask.
January 31
Can you ask him if there is a difference between the involuntary twitches you get with ataxia and the ones associated with dystonia? How do you know whether its just the ataxia or whether you may have another condition besides?
January 31
Thanks to SavantMD.com for helping to spread the word about the community here. Please leave a thank you comment on the SavantMD page welcoming LivingWithAtaxa.org.
January 27
A blog post by Scott Orn was featured
I thought folks might want to see the blog post I put up thanking www.SavantMD.com for talking about Ataxia through videos. Dr. Savant is a friend and my doctor. Hopefully his videos help. What other questions would people like him to answer? http:…
January 26
January 21
January 20
Scott Orn gave a gift to Alan Thomas
January 16
Scott Orn gave a gift to Kati
January 16
January 16
Scott Orn received a gift from Ben Munoz
January 15
Scott Orn gave a gift to Kati
January 4
Scott Orn received a gift from Ben Munoz
December 25, 2009
Scott Orn gave a gift to michael
November 26, 2009
Scott Orn and michael are now friends
November 26, 2009
November 25, 2009
Kati and Scott Orn are now friends
November 21, 2009
November 20, 2009
November 20, 2009

Profile Information

Are you a patient, relative, friend, or medical professsional?
Friend
What type of ataxia do you have?
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Please share your story with the community...
I helped found LivingWithAtaxia.org after seeing all the amazing things Ben had done with AVM Survivors. Ben created an amazing place where people with AVM could provide support and shine. We thought Ataxia deserved the same kind of support group.

Scott Orn's Blog

Scott Orn

SavantMD Videos on Ataxia

I thought folks might want to see the blog post I put up thanking www.SavantMD.com for talking about Ataxia through videos. Dr. Savant is a friend and my doctor. Hopefully his videos help. What other questions would people like him to answer?

http://www.kennykellogg.com/2010/01/savantmd-living-with-ataxia-partner-for.html

Cheers.

Scott

Posted on January 26, 2010 at 2:00am — 4 Comments

Scott Orn

Custom Hospital Gowns

I'm always blown away by the creativity of the people on LivingWithAtaxia and the other networks that Ben and I help run. I highlighted the work Shalon, a member of AVMSurvivor.org, on my personal blog today (http://www.kennykellogg.com/2009/10/creative-hospital-gowns.html). Shalon has to go to the hospital a lot and got tired of the drab hospital gowns, so she started a gown making business.

I thought folks would appreciate the gown. Who knew there are options in hospital fashion. Hope you enj… Continue

Posted on October 13, 2009 at 12:22am —

Scott Orn

Colleen's Poem: When the Moons Return

I found her poem so beautiful that I posted it on my blog. She was gracious enough to give me some extra commentary at the bottom. Thanks Colleen!

http://www.kennykellogg.com/2009/09/when-moons-returns.html

Posted on September 26, 2009 at 1:54pm —

Scott Orn

LivingWithAtaxia.Org Twitter Directory - Ataxia Patient Support Network

Hi Everyone,

I thought it would be fun to have a list of people who use Twitter on LivingWithAtaxia.org. There is a link below. It's open to the public, so add yourself to the list. I also put some fun commentary categories in there if you feel like it.

http://spreadsheets.google.com/ccc?key=pg4eiF19Fr4c67Y8qdAOBeQ

Here is a primer on How to Twitter frContinue

Posted on April 13, 2009 at 12:43am —

Scott Orn

Holiday Songs

I'm a sucker for Holiday music. In fact, as I write this, I'm listening to the Muppets version of 12 Days of Christmas.

Anyway, I thought I would post a few Holiday songs in case people were interested.

Have Yourself a Merry Little Christmas - ColdplayContinue

Posted on December 25, 2008 at 1:00pm —

Comment Wall (37 comments)

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At 1:11pm on January 20, 2010, Sarah-Jane Squire said…
Hi Scott. Thank you for the Help Haiti gift. Everyone in the UK, and I'm sure globally, is devastated.
love and light
Sarah-Jane
At 9:29pm on January 15, 2010, Ben Munoz gave Scott Orn a gift
$1 for Haiti.
At 11:49am on December 25, 2009, Ben Munoz gave Scott Orn a gift
Merry xmas, Scott!
At 4:15pm on November 20, 2009, Kati said…
LoL! Just seen your message, Inca says thanks for the hamburger! Do you know how to make posts in showcase stay in one section like blogs do? Cos when you make a post in showcase it is ending up on forum?
At 5:01pm on October 24, 2009, Bones said…
Thanks I just reposted the Blog tell me if you don't see it .michael
At 4:43pm on October 24, 2009, Bones said…
Thank you Scott and yes he will live on in my pictures and memories. Again thanks for the kind words. Because of me posting my pictures on the site, I wrote a new Blog about animals check it out. Michael"Bones"Jones
At 11:06pm on October 23, 2009, Bones said…
Thank you Scott.I sometimes call him Grand Master B.He is a sweetheart and doesn't have one bad bone in him! He loves everyone people and animals too.He has always been a blessing in my life and I have learned a lot from him.He is very old now and must be put down soon due to kidney failure.I put him up on the site to honor him and because it's such a nice picture of him.He will be missed I've had him since he was 8 weeks old.But because I love him so much I don't want him to suffer we has humans sometimes are more humane to animals then to people.He will be put down Friday that will be a sad day in my house that day for sure. But it's what best for him not for me but for him! Boy I hate this but when you get a dog thats the deal they don't live that long so when the time comes you what's best for the animal. You should know that going into it. Anyway thanks again for becoming a friend and the kind words about Buddy. Looking forward to get to know one another. Michael"Bones"Jones
At 10:59pm on October 22, 2009, Bones said…
HEY SCOTT,BUDDY LUV IS A APRICOT TOY POODLE AND YES HE LOVES EVERYONE. THANKS FOR KIND WORDS HOPEFULLY WE CAN BECOME FRIENDS MICHAEL
At 2:55pm on August 12, 2009, Kati said…
ok, well I only got admin rights today, i didnt have them before. we got a slight hiccup as the posts are ending up in forums at the moment but I dont know how to do website maintenance yet.
Hope you will bear with me while I learn how to do it all, I thought it was you and Ben in charge of all the technical webby stuff!
 
 
 

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