Interesting things at ECTRIMS 2011

My photoshop of ECTRIMS.
Got Red?

So, while I was at ECTRIMS I have to tell you that everything was RED! The carpet the tables even the chairs... I have Optic Neuritis, so I have an issue with RED. Needless to say, I was tripping.... a lot. I did want to keep everyone up to date on some new and exciting tools that are out there that I learned about at ECTRIMS.

I visited the Genzyme booth where they were showing their resourceful tool called the MS Atrium. It's an exciting tool that is very interactive & helpful to anyone who wants to know more about MS. One thing I have to share about viewing the MS Atrium, is that they asked me for MY opinion. Let me tell you, I was happy to give it to them.

I've never had a MS pharma company ask me for my opinion on something so this meant so much. It made me feel that our voice does matter when it comes to tools and resources and even the pharma drugs. A lot of the people that I saw in each booth at ECTRIMS didn't know I had MS... so they were speaking to me in a "teaching" persona... when I already knew a lot of what they were saying.

I can't stress the importance of being knowledgable about all things MS, especially if you are diagnosed with MS. It's up to us to change the course of Multiple Sclerosis in the long run. By making our voices heard... it can make a difference, even if it's a small one. I did want everyone to check out the MS Atrium though, www.msatrium.com/

Let me know what you think about it. It's like a virtual world of all things MS. Also, what was your favorite thing covered at ECTRIMS? I've been responding to comments that I've seen in the Conference Center... but i'de like to hear more feedback from everyone. I have still been getting contacted about ECTRIMS from different companies... and I want to provide as much feedback as possible. Remember, every voice counts.

Urinary Incontinence Tool (ECTRIMS 2011)

So, while I was at ECTRIMS in Amsterdam. I asked a question to Allergan, Inc. about their Urinary Incontinence Tool. I have received an answer to my question and I would like to share this information with everyone. The question we asked was...: 

"Please tell us about the exciting new urinary incontinence screening tool that will be available to MS patients in the coming months."

The Answer we received from Manuel Signori, Sr. Director, Global Strategic Marketing, Urology.

"Many people with multiple sclerosis (MS) live for more than 4 years with bladder problems (incontinence) before having their first discussion with their physician about their condition. Often times, patients don¹t discuss their bladder issues with their doctor because they feel embarrassed or consider bladder issues something they just have to live with as a result of their MS.

The Actionable: MS Bladder Health Screening Tool was created by Allergan, Inc. to help the 60-80% of people living with MS who encounter bladder problems (incontinence). The Tool was developed to help patients understand when certain bladder symptoms warrant a discussion with their healthcare providers. It is the first MS expert approved, MS tool for urinary incontinence that takes both medical issues and quality of life (QOL) into account. It is not linked to any product or treatment.

It is our hope that The Actionable: MS Bladder Health Screening Tool will positively impact the patient/doctor conversation around bladder problems that put limits on social, professional and personal activities. These important conversations are the first steps in setting common expectations for the management and treatment of MS related bladder conditions."

I'm Home from ECTRIMS 2011!

Well... it's Monday and I'm back in Texas.... It's good to be home, but I wish it was cooler weather.
I had a BLAST at ECTRIMS!!! I hope everyone enjoyed the information that I recorded and sent back to be published.

It was a unique experience, being behind the scenes of what goes on with all the DR's. One thing I did bring up to some of them is that the patients want more information not just more drugs... some responses I received were, to bring you're updated medication list and an in depth description of what's been going on since your previous visit.

I do this by going to patientslikeme.com   You can basically have all of you medical info on one place and then print out a "Doctors Visit Sheet" when it's time for your DR appt. This gives your DR all the information he or she needs to treat you properly.

Another thing I learned, there is no WRONG question. Never feel that you can't ask a question about medical concerns, even if they are embarassing ... all of us with MS do have embarassing symptoms to deal with.

I loved hearing what all the DR's had to say and all the information given by Dr. Kantor. While I was at ECTRIMS, I walked around booth to booth picking up all information that I could on everything MS...

So, once my brain is functioning properly, I will try my hardest to get this information out there to everyone.
I wanted to thank EMD Serrono and Novartis for their Educational Grant, that made the coverage from MSWorld at ECTRIMS possible.

Remember, each one of us living with MS is unique... and that's why MSWorld is a "fit" for us. There is no other organization that is all patients supporting one another.
Once my jet lag wears off, I will be doing my video blog to give a more in depth "overview", but I didn't think it would be the best thing to do right now, with my brain not fully working! haha

And don't forget to keep checking back to the ECTRIMS coverage, because there are some more videos that will be posted... I recorded so much, that we are trying to go through ALL of it, and get it ALL posted!

Take Care everyone!

xoxoxoxo
Ashley

Day 3 at ECTRIMS 2011

All I can say is ... WOW! It was such a BUSY, but yet EXCITING day! There was so much information everywhere I turned. I got to interview w/ my MS Specialist Neurologist at ECTRIMS! I can't even express all of the wonderful information I've learned while being here.

While going around to different "exhibitions" for the different Pharma Companies and such, I've gotten their "pamphlet" book for each one. So... once I get back home to Texas, which I heard isn't so hot there anymore, I will go though the information and type up an outline for everyone to view and download?

I've noticed that I have ha a lot of "views" on my blog & I would love to hear everyone's feedback from my blogs, written and video. For the last day of ECTRIMS, I will be covering Late Breaking News! Once that is recorded, Dr. Kantor and I will do a brief recording with each other, to show our appreciation for all information we received from ECTRIMS and a BIG thank you to the MSWorld members for the great feedback.

The sole purpose of me coming to Amsterdam for ECTRIMS was for all of us living with MS. While I was walking around and speaking with Doctors and such... I was asked why exactly the differnce was between my 'blog' and the interviews done...

The best way I can describe this, is that "You don't get it, till you get it."
Being diagnosed with MS, I feel that I can provide the information given to me from ECTRIMS in a different, more understanding point of view.

I will be flying back to Texas Sunday! I will probably be sleeping a lot but I will make sure to check in and bring everyone a full overview of ECTRIMS, so stay tuned for that.

I think that one of my favorite things to hear about at ECTRIMS was stem-cell therapy. What has been your favorite so far?

Time to get ready for the last day, my sleep schedule is completely messed up! I will give updates as soon as I can.

xoxoxo
Ashley Ringstaff
RingpOP/Ringer1319
Social Media Director
MSWorld, Inc.

Day 2 of ECTRIMS 2011 in Amsterdam

Well I'm sitting in the Cafe at the RAI Theatre where ECTRIMS is being held. I am meeting up w/ Dr. Kantor soon to bring everyone more information. The sympossiums are things I can't record on, but I'm getting all the pamphlets of information that I can. I will then organize it in to a summary and share it w/ everyone in a PDF form.

Dr. Kantor is currently in the meeting over 'Functional reorganisation and rehabilitation' ((again they spell things differently)).
On the videos that I am recording of Dr. Kantor, he is asking questions, not to just to question your thoughts... but to comment on the videos because we would all love for all things to be discussed more interactive.

The poster session is also coming up, I will go walk through that after the recorded with Dr. Kantor. There is so much valuable information being discussed here. I have not found my neuro yet, though he is here. It would be nice to see him and possibly record him.

Please stay tuned for new videos to be posted. I will update at the end of the day on my video blog, I just figured throughout the day I could SIT DOWN & type and keep everyone up to date on everything ECTRIMS.

On a personal note, I'm not doing the whole walking around Amsterdam today... My feet are killing me & it's been raining, even hail yesterday. I had heard that it's supposed to clear up soon, so this is good. More interviewing outside, so you can have a visual of where ECTRIMS is actually being held at.

I'm trying to find a quick book online to download, or an app to speak dutch just for the necessities. Like I said I'm in the cafe right now, drinking a Diet Coke... but the bottle says "Diet Light" .... in the old school coke bottles. The food here is amazing, once you understand what the menu says.

This is why I have been eating a lot in my hotel. I was in the lobby last night and I had my computer up to MSWorld.org and a women next to me saw ECTRIMS on the website, and asked if I was here for ECTRIMS... we had a good conversation, turns out she is from the NMSS, NYC Headquarters.

I'm meeting a lot of great people here, and I hope everyone is enjoying the information that I'm sending over! Well it's time to go, after my video blog tomorrow, I'll, write again & let everyone know of tomorrows schedule (Friday the 21st). I do know that Allergan will be speaking about their Screening Tool concerning Urinary Incontinence... I did the screening, it's pretty neat. I'm going to walk around and see if I can do any more recordings to send back of all the new things in trial or that are coming back.

Leave comments if you want.. or questions. I'll get back to them when I can.

BYEEE!!!!

** Ashley Ringstaff, aka RingpOP/Ringer1319 **

Getting to Amsterdam 2011

Hey everyone!
Well I'm here in Amsterdam! My hotel is so retro and amazing!
While I was unpacking some things, I fund a Shrek stuffed animal in my luggage... I miss my boys so much! I spoke with them on the phone though, and we can still Skype & see eachother, so I'm looking forward to that.

Well... first off, my plane ride from Houston to Amsterdam, was interesting to say the least. The Baseball Team for the Netherlands were on the plane & I had no idea, but they had just won the world series, so it was a big party on the plane & a big crowd once we got off of the plane.

After a lot of confusion & getting lost, only once. We finally made it to our hotel and passed out. So that's why I'm up right now and posting this at 1:42am, Amsterdam Time.

I'm looking forward for tomorrow, well technically today. I figured that if I can't video blog, due to noise or some sort of issue that I can at least update typing. I hope y'all are enjoying the video blog & I can't wait to start filming at ECTRIMS and hear all the latest news & share it with all of y'all. I'm going to be taking pictures here and there.... and posting them on the blog.. So y'all can see what I'm seeing! Cool?? I think so!

I know everyone misses me... & I miss everyone as well. I'll check in soon! Take Care!!!!

XoXoXo

Ashley Rinstaff aka Ringer
The one and only Chicken Super Gluer!