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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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Sharon
PostPosted: Tue Dec 15, 2009 5:12 pm 
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Yesterday, I received an email from Holly's sister.
Quote:
Hi, Sharon-John (Holly's boyfriend) called me yesterday and said that it was posted on the MS website that Holly's mother died of the same thing-I went and found those postings and am very grateful to you for clarifying the circumstances surrounding Holly at the time of her death...
AS for our mother, she is still alive...she had a massive brain bleed do to a fall where she hit her head on a piece of furniture...I was wondering if you could post that on the website...I can't decide if it's important to clarify that, but it may be. Also, Holly's birthday is Friday, Dec. 18 so people might want to know that...she would have been 51. Meanwhile, I hope you are still doing well after your surgery and I hope you have seen some lasting improvements in MS effects-I'd love to be updated! Trudy

I will do a search on the forum to find the postings about Holly's mother, and then ask each author to edit the post - okay?

I had forgotten that this week was Holly's birthday -- was glad that Trudy reminded me. Maybe this week we can each have a private moment remembering our dear friend.

Sharon
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LR1234
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PostPosted: Tue Dec 15, 2009 5:23 pm 
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Thanks for posting Sharon, yes I had heard that Holly's mother had died in a similar situation. I am glad that has been cleared up.

Missing you Holly xxx
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cheerleader
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PostPosted: Tue Dec 15, 2009 5:33 pm 
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will clear that up in my posts, Sharon. I had heard that and written it as well. Apologies to John and Holly's family. We will be thinking of her Friday-
Joan

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


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CureIous
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PostPosted: Tue Dec 15, 2009 5:42 pm 
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Thanks Sharon. That's all we want is the truth. Think I mentioned it a time or two also though haven't the foggiest where, would have been awhile ago. Thanks for clearing that up, and thanks to Trudy and all the family too, no better way to spend the 18th than in remembrance of Holly.

Mark.

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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bohemianbill
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PostPosted: Tue Dec 15, 2009 6:01 pm 
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My Dear Holly you are now part of my families prayers, You are now a disciple of the CCSVI fight , organize, educate, may you be the power in what is all things CCSVI. (especially above :) Rest Easy

God Bless

-keep the heat to the feet- ANY WAY WE CAN :) Give her hell Holly

BB
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ozarkcanoer
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PostPosted: Tue Dec 15, 2009 6:18 pm 
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I never knew Holly since I am relatively new to this CCSVI board. I wish I had known her. She sounds like a lovely woman, and her family is so nice to support us after their sad year. I will think of her on her birthday.

ozarkcanoer
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Johnson
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PostPosted: Tue Dec 15, 2009 6:48 pm 
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I will edit my own reference, and I am sorry if I have written out of turn. I am also very sorry for your loss. My birthday is Friday too, so I will think of your sister.

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My name is not really Johnson. MSed up since 1993
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cheerleader
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PostPosted: Tue Dec 15, 2009 6:51 pm 
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for those who would like to learn more about our friend...search Holly's user name "peekaboo" and read some of her posts. She was always encouraging, funny, and indomitable. I'm so sorry for her family and loved ones' loss-

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


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skydog
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PostPosted: Tue Dec 15, 2009 6:57 pm 
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Always missed and forever remembered. God bless Holly's family in this season of hope. I will pause and reflect on her birthday. Peace to all, Mark

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catfreak
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PostPosted: Tue Dec 15, 2009 9:44 pm 
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Holly's family and friends were blessed to have Holly in their lives.

I never got to meet her in person but we were friends online and I miss her in a way that there are no words for. She was my encouragement.

I will spend a moment of Friday in silence for Holly and the rest having a good time for Holly by playing some Greatful Dead and some Pink Floyd and thinking of her smile!

Cat

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Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Dovechick
 Post subject: Holly's birthday
PostPosted: Tue Dec 15, 2009 11:23 pm 
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Like some others here I never had the opportunity to meet Holly online, but she is now part of our story and will always be important to us. If she was anything like my daughter (and I suspect that everyone who has MS and is not prepared to submit to the disease is like my daugher) she was prepared to take a risk, she was not a victim of her disease, she was in control of her life in ways that others would not dare to be, unfortunately none of us are in control of our deaths.
My husband's birthday is also on Friday 18th, so when I give him his present I will spare a thought and a thank you for Holly, for adding to our story.

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Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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jay123
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PostPosted: Wed Dec 16, 2009 6:16 am 
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Isn't there a memorial fund for Holly that supports Dr. Dake's work? Is it still active?
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Sharon
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PostPosted: Wed Dec 16, 2009 7:25 am 
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Jay123 -
Dr. Dake set up a fund "The MS Innovations Fund" - you can contribute to it in the name of Holly. Just to clarify - the fund was already in place but not active prior to Holly's death. The fund became active when the first check was received. Stanford made it possible for us to donate to the fund in Holly's name. Please see this thread http://www.thisisms.com/ftopic-8324-0.html. The information is also on the CCSVI Facebook site.

Sharon
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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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