A note from Holly's sister

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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A note from Holly's sister

Post by Sharon » Mon Aug 31, 2009 10:40 am

I received an email from Trudy, Holly's sister. She asked if I would post this note on the forum.
Dear friends of Holly,
I am Holly's oldest sister, Trudy, in California. Holly stayed with me when she went to Stanford hospital. I want you all to know that she had a great time during the last week of her life, spending it here with her best friend, Kathy. We got "out and about" during the day and had lots of social fun in the evening. If we had known that she would die so suddenly, we couldn't have planned a better last week of life. During her final days, the doctors, nurses, and everyone else affiliated with the hospital (St. Joseph's in Phoenix) could not have been kinder. Dr. Dake flew down to Arizona and has tried to help in every way possible. Holly's body has been donated to the Human Brain and Spinal Fluid Resource Center in Los Angeles-for MS research. Dr. Dake is in touch with them to see if they can study the vascular aspects of the disease. It was Holly's wish to further MS research in any way. I want you all to know how much you meant to Holly. She loved the website and communicating with everyone there. It gave her a sense of purpose and community. She wanted to be a pioneer for all of you. She would want all of you to carry on in the same spirit of adventure, research, and camaraderie. My sisters, Jill, Laura, and I want to thank all of you for your friendship and support of Holly. We want to wish all of you good luck for the future. Sincerely, Trudy Roughgarden
Holly's contribution to CCSVI research will benefit all of us whether we have had the procedure or not.


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Post by Loobie » Mon Aug 31, 2009 10:45 am


she was flippin' cool. I got choked up reading that.

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Post by mrhodes40 » Mon Aug 31, 2009 11:06 am

I loved Holly's spirit, she was a good friend to me. I am so glad she was living life with MS on HER terms. She left in a surprise way, but few of us know the hour of our parting, I am glad her last week was positive for her.

What an incredible gift to the world that her body will teach something and that they have a chance, because of knowledge/awareness to look at the veins specifically. That is just cool........
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

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Post by MaggieMae » Mon Aug 31, 2009 11:27 am

Holly may be helping those with MS more than she could have ever imagined, especially since Dr. Dake is in contact with the Research Center in Los Angeles as they look at the vascular aspects of MS. What a gift she has left us all.

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Post by catfreak » Mon Aug 31, 2009 12:02 pm

I am fighting tears as I write this. Holly had become someone very special to me in the last few months, as I am sure she was to all those here.

I miss her everyday, she in my thoughts constantly. I think she represented us as a community and our strength as friends, most who will never meet, better than anyone could have.

I know she is looking over us all and smiling as we continue to find our place in this world.

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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Post by LR1234 » Mon Aug 31, 2009 12:40 pm

I always found Holly to be really helpful and supportive and like everyone else I will miss her posts. Thank-you Holly for being one of the Stanford pioneers and thank-you for donating your body to further our fight against this terrible disease.

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Post by Arcee » Mon Aug 31, 2009 1:48 pm

What a gracious note from Holly's sister. Thanks to Trudy and the rest of the family for checking in with us.
Holly is leaving quite a legacy in so many ways. That note was a kick to me to set up plans for helping with future MS research. But here's hoping that not only is that day way in the future for me, but that there won't be a need for MS research at that point...
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri

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Post by javaneen » Mon Aug 31, 2009 5:23 pm

Thank you Sharon for posting this for us. And thank Trudy for us. Holly will be forevered missed. She definitly paved the way for all of us and I will always be grateful! Thank you Holly!

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Post by ErikaSlovakia » Tue Sep 01, 2009 12:24 am

Holly is a real hero for me!
Thank you, Holly!
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

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Post by cheerleader » Tue Sep 01, 2009 6:57 am

Thank you Sharon- for staying in contact with Trudy throughout this difficult time for their family. In her death, as in her too brief life- Holly is doing so much for so many others.
No one has greater love than this: to give one's life for one's friends
(John 15: 12-13)

Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09

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Trudy-Sharon's post

Post by radar22 » Wed Sep 02, 2009 7:57 am

Thank You- Everyone for remembering and loving Holly.

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Sharon's post for HOLLY

Post by ladystewart » Wed Sep 02, 2009 8:32 am

Brought tears just knowing how she was and all she did for everyone!!

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