Chicago MS Summit Part 1
My blogs this week and next detail my unique version of the events that transpired during an MS Summit sponsored by Novartis Pharmaceuticals Corporation.
Novartis provided all the airfare, hotel, meals and travel costs for this summit.
When I first started writing about the crazy and frustrating aspects of my life with multiple sclerosis it was to keep myself from actually going crazy.
After a lot of time and a lot of writing, I started thinking maybe I could use my writing to make a buck or two.
When neither of the above writing goals came to fruition but readers started commenting that I made them smile, I then discovered the real goal of writing- to help others. Helping others is important, even if I am still crazy and poor, and thus why I keep on sharing my MS stuff with all of you.
What I didn’t realize was that every so often, a drug company does care and wants to hear what people with MS think. To this end, Novartis recently invited 10 MS bloggers to a summit in Chicago.
How they picked their 10 I’m not sure but I was thrilled to be included. I had never been to Chicago and couldn’t wait to see a new city and meet up with my fellow bloggers, many of whom I had met before, most of whom I followed.
Novartis asked us to come talk to them because they said we were in “the space.”
I’m not totally sure what that means but I think it has to do with the fact that they couldn’t really invite all 2.5 million people living with multiple sclerosis to Chicago as the city isn’t THAT big. But they could ask people who write about MS to come and then share what we are hearing from our readers and tell Novartis about it.
At first I thought, well that doesn’t seem fair. How come I get to go and others don’t? Then I thought, screw that, it’s a free trip to Chicago!
And I’m so glad I went.
Novartis chose MS bloggers with different experiences, different levels of progression and different writing styles and so reports from the summit can and will vary greatly.
Here’s mine-
I arrived in Chicago to a rainy, cold and yes, windy city. No wonder it has that nickname. There was to be a dinner that evening where we bloggers could visit and meet some of the Novartis staff who would be hosting the next day’s events.
I was to have two hours of sightseeing time before the dinner but the rain and heavy traffic it caused put an end to that. I did do some sightseeing though. From my hotel window I saw a Dunkin Donuts, which I promptly walked to get some hot tea. Nothing says familiarity to a New Englander than a Dunkin Donuts logo.
Then I rested.
Then I had a great dinner with some great people complete with delicious pasta, free wine and crucial to top notch brain skills, chocolate.
The next morning started with a healthy breakfast and a roundtable by Chicago area MS specialists who wanted to talk about symptom management. I wasn’t expecting much- hadn’t we all heard this info before?
But I was wrong. The panel had lots of tips and so did my fellow bloggers. We were able to learn from each other things we didn’t know, may have known but forgot, may have decided weren’t relevant, or maybe didn’t want to believe.
For example, Kegels, yoga, probiotics and water really ARE important even if you don’t want them to be.
Limiting beverage intake in the late afternoon doesn’t really help your OAB at all, especially if you are also dehydrated.
There really isn’t a treatment for cognition issues except for overall MS wellness techniques and yikes, aerobic exercises.
You can do aerobic exercises even if you are fatigued and have trouble standing which was depressing as there went both of my excuses.
We helped each other with different tips. I sat next to a Novartis employee who had brought diet soda with her to drink during the summit. My experience of breaking my diet coke addiction got to her and she switched to the free water instead.
What surprised me was how so much of the discussion focused on information from the urologist on the panel. Ironically, as soon as she started to talk everyone suddenly had to pee. One by one my fellow bloggers went to the bathroom.
I had to go too but didn’t want to miss anything. So I tried to hold it and cursed myself for forgetting to do my Kegels. It got hard to hold when the urologist actually said “new information about bladder control is constantly trickling down..”
I couldn’t help it. I cracked up and elbowed my fellow blogger to my right. He got it of course. We MS’ers know a good MS vocal faux paus when we hear it.
I was in even more trouble as the bladder talk turned to talk of cognitive issues and I certainly had to hear all of that. Turns out my particular form of cognition trouble has to do with the executive functioning component of the brain which sounds really fancy but is troubling as there is not much you can do except to have someone close to you correct your mistakes. Since most of the people close to me are pretty crazy themselves, I could be in big trouble.
It’s amazing I even made it to Chicago in the first place considering my executive brain non-functioning component. Thankfully, Novartis was prepared and had smart people help me.
At this point, I really, really had to use the restroom. But the next topic was sex and that was far too interesting to miss. After sex came, naturally, pregnancy and since you have to have a sex life to get pregnant, I finally had a time to use the bathroom without missing too much. I made it but barely.
The rest of the summit consisted of a healthy lunch, and a dialogue between us bloggers and Novartis about social media, patient interactions, what has worked for bloggers as far as reaching an audience, medical technology and various campaigns to help inspire the MS community while spreading MS awareness.
The day brought some great discussions, and not once were any particular drugs mentioned, including Novartis manufactured MS medications. This fact made me feel as though Novartis really did want to hear from the MS community.
As the cost of disease modifying drugs continue to skyrocket and patients continue to be VERY concerned about the motivations of the drug companies, it was good to feel heard. I hope me and my fellow MS bloggers provided some great information that came directly from what we are hearing in “the MS space.”
If we didn’t, well, we at least had a blast!
Tune in next week for the rest of the weekend adventures including getting kicked out of a cab, a major MS realization and how MS and I survived twelve hours of airport frustration!
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Great that you got to go to Chicago and enjoy the sights and food and your fellow bloggers but I can’t help but wonder why Stuart Schlossman andThe Wheelchair Kamikazee weren’t among those chosen for the event. Hopefully you were able to push your book. How you sat through all that without peeing is a feat! To Yvonne the up and coming MS officianato and your next book. Enjoy aerobics (haha)
Thank you so much Judy!!! It was really cool. I actually know Stu and I think I heard that he was invited but had a conflict and couldn’t attend. I know some other bloggers who were also asked but couldn’t go. I’m not sure about The Wheelchair Kamikazee but I am glad you mentioned him as he is awesome and I need to add him to my links page. I’m doing that now. Hope all is well my friend!
Thank you Yvonne. I’m currently battling my 4th bout of optic iritis & unable to do more than scan your blog. I was VERY happy to read Novartis didn’t push treatments/drugs. I’m bookmarking your blog & look forward to reading all of your posts as I’m able
Thank you so much Bonnie- I really appreciate it! Agree with you on how Novartis handled this summit. I truly felt like they really did want to hear from the community and not just push their own agenda. My very best to you and your health. I’m sorry about the optic neuritis. It is one of my great concerns as my vision is getting worse too. The last time I saw my doctor the reason for the vision issues was aging but concerned about what he says at my next visit. Hope you have a great upcoming weekend!
I am glad that you had a good time and so happy that you FINALLY made it home…. And yes I am one of those close to you that is crazy, but heck at least i make you smile.
Serena my dear friend, I think if you had been helping me with my travel arrangements we would have “accidentally” wound up at Club Med, being waited on by a bevy of handsome male strippers…
Sounds like a great time!
See, the midwest isn’t so bad now, is it?
Can’t wait to read more about your trip!
Thank you My Odd Sock- it was a blast! Next week I write about how I found a whole ocean right in the middle of the city-so cool. The people I met on the street said it was Lake Michigan but I don’t believe them. It looked like an ocean to me!!