2nd Annual CCSVI Symposium in NYC July 15-17

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Would you be interested in attending a patient day without cost?

yes
38
81%
no
5
11%
maybe
4
9%
 
Total votes : 47

Postby bestadmom » Mon Jul 18, 2011 6:39 pm

Thank you, Dr. S for inviting me to be part of patient day and for being a part of my life. Every time I stand up without help, I think of you.

I wish I had met everyone who attended. It was overwhelming and energizing and I'm looking forward to next year.

Pam, love your alliteration, can't help but think of CeCe!!!
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Postby marcstck » Mon Jul 18, 2011 8:24 pm

Just want to add my sincere thanks to Dr. Sclafani, for sponsoring the event and for inviting me to present an essay to the assembled group. I was a bit nervous about the challenge of marrying some of my photographs to an essay about CCSVI and MS, but it seems that things turned out okay. I escaped the stage without being pelted by rotten fruits and vegetables (unlike my days as the lead singer of a punk rock band, when I had the occasional beer bottle hurled my way).

Much thanks too to all of the folks who came by to introduce themselves. It was truly a pleasure meeting everybody, and finally being able to put faces (and bodies) to some of the virtual personalities here on TIMS.

BTW, if anyone is interested, I'm posting my presentation on my blog, in four parts. Here's a link to part one:

http://www.wheelchairkamikaze.com/2011/ ... words.html
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Postby pklittle » Mon Jul 18, 2011 9:32 pm

Thank you Marc! It was truly a pleasure to meet you and chat a bit after the patients day ended and some of us moseyed over to the bar. Your essay and photographs were touching. You are so talented. I showed some of the photographs from your blog to my son, who loves photography as a hobby.
Take care..
Pam :)
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Postby HappyPoet » Thu Jul 21, 2011 7:46 am

Hi everyone,
Hopefully, my additional thanks aren't too late in coming...

Trisha (Bluesky63), WE DID IT! After knowing each other on two Internet MS forums for 12 years, we FINALLY met in the real world!! When a decade passed, I started to give up hope that we would ever get to meet in person, BUT you showed me that one should never give up hope -- the moment I saw a gorgeous cascade of flame-colored hair, I knew I would get to hug a very special, lovely, fun, caring, and vibrant person. Spending time having coffee together was such a treat. Thank you so much for going to the symposium -- let's not wait another dozen years before we see each other again!

Chris (1eye), you and your wife, Suzanne, are two of the most wonderful people I've ever met. Truly. Wonderful. When my narcolepsy symptom started to flare during happy hour, you left your friends in the bar early in order to see me safely to my room -- you proved that kindness and compassion are alive and thriving at TIMS. My husband and I, eternally grateful, thank you more than words can ever tell for having taken such excellent care of me. I love all your posts so please keep them coming!

Angela and Keith, hopefully my words will somehow find you or you will find them. Spending time with you was a joy. You showed that life can be beautiful when it's as quiet as two new friends simply holding hands and can be as invincible as the love you two share. Thank you with all my heart for giving me the pleasure of your company and for allowing me the privilege of getting to know you. My Flowers 4 MS tee-shirt is on its way. You remain in my prayers.

Maren (Cece), through good times and bad and through happy times and sad, our online friendship lasted and strengthened which has made me very happy, and meeting you in the real world has made me even happier!! I had so much fun with you, just like I knew I would, and I promise that next year, we won't get into any trouble at all <smiling>, so hopefully your husband won't mind if we sit next to each other again, lol. Thank you for participating on the patient panel -- you were great!

Michelle (bestadmom), I keep laughing at myself every time I think back to what a pest you must have thought I was and to you probably thinking, "Why is this stranger sitting next to me and acting like she knows me?" Lesson learned. From now on, every time I introduce myself to a member of TIMS, I'll definitely make sure to include my TIMS user name (I told you I can be a dolt). I'm very glad you asked if anyone had seen HappyPoet so that we could be properly introduced! Thank you for participating on the patient panel -- you, too, were great!

Marc (marcstck), meeting you was fantastic, and your photo essay was superb. I can't thank you enough for having taken those amazing photos! If you haven't already, you should enter each of them in contests. The photo that perfectly captures the bird taking off in flight from the bird bath statue that itself has the same bird taking off in flight is my favorite photo and fills me with hope that such "freedom" will one day be possible for everyone. Thank you for sharing your photos and for speaking about the deep symbolism in each one. I can't wait to see the photos again and to read your words on your Wheelchair Kamikaze blog.

Deb (dlb), you're in my thoughts as you rest this week after your CCSVI procedure with DrS on Monday. I'm very glad arrangements worked out so you and your husband were able to rendezvous in NYC and attend the symposium together -- if he hadn't made his connecting flights, I would have stayed with you until he arrived. I'm very thankful I had the opportunity to meet you in person. Please remember to rest!

Pam (pklittle), I'm very sorry we didn't get a chance to meet at the symposium, but Cece pointed you out to me, so if there is a next time, I'll definitely say hello and introduce myself. Until then, I'm thankful we have TIMS.

I'm already looking forward to DrS's July, 2012 NYC CCSVI Update Symposium. :D

Best wishes, everyone!
~Pam
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Postby Cece » Thu Jul 21, 2011 7:57 am

HappyPoet wrote:I'm already looking forward to DrS's July, 2012 NYC CCSVI Update Symposium. :D

Seconded....

HappyPoet, you have outdone yourself here, but let me add...

HappyPoet, your personality shines through in person just as it does online. I was looking for you before you found me. Missing Montel was unfortunate but missing HappyPoet would've been far more so.
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Postby esta » Thu Jul 21, 2011 8:25 am

just chiming in to say how reminicent reading all your posts are, to the first time I was in Poland and meeting everyone in person there, finding out their tims name and who they were in person.

We've come a long way in one short year!
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Postby HappyPoet » Thu Jul 21, 2011 5:12 pm

Cece wrote:Missing Montel was unfortunate but missing HappyPoet would've been far more so.

Cece, I saw Montel when I walked in late and had to look toward the back for a place to sit, but <cringe>, I didn't recognize him right away -- one of those MS things, like not being able to find the right word at the right time... in this case, I couldn't place the right name with the right face.
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Postby bestadmom » Thu Jul 21, 2011 5:20 pm

HappyPoet wrote:
Cece wrote:........but missing HappyPoet would've been far more so.


I second that, and I spent a good part of the day sitting with and talking to HappyPoet, not knowing it was her until the end of the symposium. And I thought I had no cog fog. Hmmm
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Postby pklittle » Thu Jul 21, 2011 6:07 pm

HappyPoet, I am sorry I didn't meet you last Friday. Next time!
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Postby dlb » Thu Jul 21, 2011 8:23 pm

Happy Poet,
No way to top the way you, so eloquently, posted!

I have only been on social network sites for the past almost 2 years and I was so excited to meet some of you. I'm never a real mixer at a social function, preferring to melt into the back ground, so I never met all that I wanted to meet, unfortunately! Timing is a factor, isn't it.... I look forward to the 2012 annual symposium - it will be my 1 year check-up as well!

I have to say that I am already really surprised by my progress. I guess I had symptoms that I never really recognized until they left!?! And so quickly, they left! I have been quietly noticing some changes, choosing to be cautiously optimistic and not speaking about it, but I guess Doug has been scrutinizing me very carefully! Interestingly, yesterday he started commenting on some things that I had also noticed - maybe it's not my imagination?!?

Marc, I so admire you! I could hear in your voice that you were nervous, but you are an amazing person with amazing talent and a wonderful spirit! I wish I'd had the chance to meet you. Maybe next year. I will really enjoy reading your blog entries - your presentation, as I always enjoy your blog!

I'm not sure how I would have coped with my procedure day without the symposium group support! Not sure why I was so nervous, but the reassurance from everyone really helped me get thru the day. I think I may have run like the wind when we had such a delay that day, had it not been for the positive words of encouragement from all. Thanks so much.

Much health to all - til we all meet again!
Deb
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Postby Cece » Thu Jul 21, 2011 8:30 pm

dlb wrote:I have to say that I am already really surprised by my progress. I guess I had symptoms that I never really recognized until they left!?! And so quickly, they left! I have been quietly noticing some changes, choosing to be cautiously optimistic and not speaking about it, but I guess Doug has been scrutinizing me very carefully! Interestingly, yesterday he started commenting on some things that I had also noticed - maybe it's not my imagination?!?

When I was talking to you, I thought you were likely to get improvements!!

For me too there were the immediate improvements and then there was a second round of improvements that came three months later. I get hopeful when I hear others have immediate improvements because of the chance that it will get even better. :) :)
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Postby 1eye » Fri Jul 22, 2011 8:40 am

'Twas unforgettable even for a jaded observer but my brains being the way they sometimes have been, I should write this before it falls through my mental floorboards. A main notability is that one rare advantage of having this disease has been that I have at times found myself, through no fault or action of my own, surrounded by remarkable and beautiful women. At earlier times this would have frightened the life out of me, and I can remember it actually did once.

Not on Patient Education Day, though. I was in a wheelchair, because we figured Suzanne would want to bomb around on foot at times and wouldn't be able to wait for a slow walker, so we left it in Syracuse. Good call.

Even though I scrupulously took my modafinil I am still prone to micro-napping in presentations, so I kept having to lean over and whisper in Suzanne's ear to make sure I hadn't snored. I did pay attention to most of what was presented, which included fascinating talks from Dr. Haacke and Dr. Sclafani, a round-table discussion with question-and-answers, a talk by Wheelchair Kamikaze, and a film called "When I Walk", directed by a guy who has PPMS and has had unsuccessful angioplasty. The film's music was by Joan aka cheerleader's husband Jeff. The director was there as well.

The drug talks were interesting (on anti-coagulation, anti-clotting, probably other stuff too, I probably napped, they talked very fast, it was very technical).

Annette Funicello's Research fund for Neurological Diseases had a fresh fruit, green tea buffet and it was very very good, the fruit part anyway. We heard someone saying how she wasn't very happy with the lack of emphasis on research in the MS Society's budgeting. You can say you heard me say I heard it said.

Afterward there was a Happy Hour where a lot of tea-totaling low-spenders caroused in the hotel bar and a good time was had by all. Met most/all those people HappyPoet talks about above, plus her, and then she came up to see our cool 42nd-floor view of the Hudson River by night. Two nights in NY. I've been there twice now, July 1967, and July 2011. Last time I didn't stay the night. I just woke up there. Neither time did I see any Trade Centers, though both times there were Empire State Buildings and Statues of Liberty.

Didn't spot Montel.

Cece's husband: I meant Norwegian Bachelor Farmer as a compliment. I come from Prairie Home Companion fan-stock, and believe in Lake Wobegone, and have a sign on my wall that says "The Sullivans: Where the Women Are Strong, the Men Are Good Looking, and All of the Children Are Above Average". We think you both have the Strength to Get Up And Do What Needs To Be Done.

Thanks all presenters, workers, those guys we met at lunch, Drs. Sclafani and Beggs who spoke to me a mere mortal, and all the drinkers and other happies at Broadway 49.
Last edited by 1eye on Fri Jul 22, 2011 11:30 am, edited 3 times in total.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby bestadmom » Fri Jul 22, 2011 10:46 am

1eye, I am smiling from ear to ear. You are so smart and so funny, and it is a shame that it took until now for you to be surounded by scores of remarkable and beautiful women. Anyway, you only need one, and you're married to her.
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Postby HappyPoet » Sat Jul 23, 2011 7:53 am

bestadmom wrote:1eye, I am smiling from ear to ear. You are so smart and so funny, and it is a shame that it took until now for you to be surounded by scores of remarkable and beautiful women. Anyway, you only need one, and you're married to her.

Ditto!
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Postby KikiT » Sat Jul 23, 2011 8:12 am

Ditto. Ditto!!!!
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