Ataxia, Did You Know?

Alan Thomas is a patient engagement advocate for rare diseases in general and Ataxia in particular. He is known as the 'rare disease warrior' and, as a patient with a 'life-limiting' rare disease, he can convey the patient engagement message from his point of view in all issues regarding the wellbeing of patients.Alan has established a patient-driven and focused group and campaigns at many levels, including patient forums, local and regional health boards, Welsh/UK government organisations, as well as taking part in many global conferences, in person or via the internet.

iTunes

https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt

SoundCloud

https://soundcloud.com/user-536040137-843024175

Facebook

https://www.facebook.com/ataxiadidyouknow/

Website

http://www.rideforjohn.org/

Instagram

https://www.instagram.com/ataxian_/

Twitter

https://twitter.com/johnnyjots

Want to be involved in the Ataxian PROM? Dr Schmahmann and Mary Donovan need your help and explain how to get involved.

Thank you for your interest in participating in our Ataxia-Patient Reported Outcome Measure(PROM)!

If you have any questions, please do not hesitate to email us at [email protected]. You can also reach out to our Research Coordinator, Samantha Pierce, at 617-726-4961. Below is the link to the surveys. One is for participants diagnosed with Ataxia, and one is for relatives of these participants. Make sure you are taking the correct survey:

PATIENTS Survey-https://docs.google.com/forms/d/e/1FAIpQLSf9SuSckJarrddQPjQtybUKiPFLbJKPh1df1yurxOtiCTDArA/viewform?usp=sf_link

RELATIVES/CAREGIVERS Survey- https://docs.google.com/forms/d/e/1FAIpQLSeZdmra_yZydiVusRCWD_IT28flXRCjY013AUnD6sj3qSF7QA/viewform?usp=sf_link

Please feel free to forward this to other people associated with ataxia (either a patient, relative, or caregiver) who would be interested in completing this survey. This survey will be closed to responses on May, 15th.

Thank you again for your participation.

Dr Schmahmann

iTunes

https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt

SoundCloud

https://soundcloud.com/user-536040137-843024175

Facebook

https://www.facebook.com/ataxiadidyouknow/

Website

http://www.rideforjohn.org/

Instagram

https://www.instagram.com/ataxian_/

Twitter

https://twitter.com/johnnyjots

#DidYouKnow Ataxia?

Where to go to get reputable Ataxia information

#StumbledontoAtaxia

#Ataxia

#IAAD2018

#DYK

iTunes

https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt

SoundCloud

https://soundcloud.com/user-536040137-843024175

Facebook

https://www.facebook.com/ataxiadidyouknow/

Website

http://www.rideforjohn.org/

Instagram

https://www.instagram.com/ataxian_/

Twitter

https://twitter.com/johnnyjots

Joel Sutherland latest updates National Ataxia Foundation Live at #2018AAC

#DidYouKnow Ataxia?

Where to go to get reputable Ataxia information

#StumbledontoAtaxia

#Ataxia

#IAAD2018

#DYK

iTunes

itunes.apple.com/us/podcast/know-…/id1312495222?mt

SoundCloud

@user-536040137-843024175

Facebook

www.facebook.com/ataxiadidyouknow/

Website

www.rideforjohn.org/

Instagram

www.instagram.com/ataxian_/

Dana Mauro talks to Megan Kaiser about discovering latest research. Live at #2018AAC

Podcast Show Notes

#DidYouKnow Ataxia?

Where to go to get reputable Ataxia information

#StumbledontoAtaxia

#Ataxia

#IAAD2018

#DYK

iTunes

https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt

SoundCloud

https://soundcloud.com/user-536040137-843024175

Facebook

https://www.facebook.com/ataxiadidyouknow/

Website

http://www.rideforjohn.org/

Instagram

https://www.instagram.com/ataxian_/

Twitter

https://twitter.com/johnnyjots

Harry Orr about discovering the first Ataxia gene and his latest research. Live at #2018AAC

Podcast Show Notes

#DidYouKnow Ataxia?

Where to go to get reputable Ataxia information

#StumbledontoAtaxia

#Ataxia

#IAAD2018

#DYK

iTunes

https://itunes.apple.com/us/podcast/know-ataxia-ataxia/id1312495222?mt

SoundCloud

https://soundcloud.com/user-536040137-843024175

Facebook

https://www.facebook.com/ataxiadidyouknow/

Website

http://www.rideforjohn.org/

Instagram

https://www.instagram.com/ataxian_/

Twitter

https://twitter.com/johnnyjots

Dana Mauro shares 5 tips that will help you get the most from your first Ataxia Conference.

So this medical binder is a little bit different than the medical journal we talked about last week In the journal you’re documenting how you’re feeling, any changes that you’re seeing, any set back in your progress, or any difficulties or new symptoms that you may be having….. Those are the things that you’re documenting The medical binder is a collection of any kind of tests that you’ve had, any kind of notes from a doctor, hospital notes, any kind of imaging results…. So it’s all your medical information in one place. And i want to show you mine… So this is what my medical binder looks like.. It’s not the prettiest thing but you guys can make these however you want, you can really get creative with these…. Let me show you inside...inside this medical binder, I have mine tabbed out, so you can see here that it’s all tabbed and what’s contained in each tab is all the information for that year. So mine is kept in chronological order by year and it’s all the information about John since he’s been diagnosed with Ataxia. So You can see it’s getting quite thick. I’m probably going to end up with multiple of these and if that happens i’ll just date them. I’ll put the date here or on the spine so that when i’m looking at the notebook I can pick the right one What this is so awesome for is that now all of your information is in one spot. So when you go to the doctor you can take your medical binder and your medical journal and be out the door And then you can answer any question that your doctor might have and you don’t have to keep everything up here anymore, you know that was the biggest relief for me I thought that it was very difficult to recall things when the doctor was asking and give the doctor the most accurate information so with the binder i feel that that really helps me I would encourage you guys to consider it. I love it I think it has really helped to keep me organized and it has helped me to give the doctor all the information that they need to know Now something else i want to mention……. Actually 2 things I want to mention 1 is within each of the tabs i have a cover sheet which is a summary of everything in that tab and then i also create a summary sheet for the entire notebook so that i list out all the tabs and then all the information within those tabs This helps me find things quickly when I’m at the doctors appointments. Say for instance that the doctor says when was the last cat scan? I quickly look at my summary sheet see when it was and if the doctor wants to know the results of that I simply go to that tab and pull out the results sheet So again, please consider it, and leave your comments you know do you think that this is a good idea, are you already doing this and are there things that you’re doing that I haven’t mentioned….. If there are, please leave them in the comments because we can all benefit from that, we can all learn from that Have a great rest of your day….. Enjoy your Tuesday and I’ll see you guys on Wednesday And don’t forget to like our page so you can get all the latest updates and all the latest did you know videos

Curious, knowledgeable wife of an Ataxian. My mission is to share reputable Ataxia information in short, simple, digestible servings. I want the world to become acquainted with Ataxia and the way it robs someone of their balance, coordination, ability to walk, talk, swallow, and see.

Dana Mauro: Talks about the importance of a good support system.