An Experience of Our Own

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

An Experience of Our Own

Postby notasperfectasyou » Mon Jun 01, 2009 6:53 pm

I appreciate NHE sending me a post on Arron and Experience Project. I got out of all this a sense that stories matter. I suppose sometimes we call them blogs like the one Kim has at cpn the extended threads some of us have here at TIMS.

But, this thread is about the question all this Experience Project stuff has me wondering.

I can say that TIMS has had a big impact on my life and Kim's life. We found Sarah here and others who have been on the protocol Kim now shares. So The TIMS experience has helped Kim get off needles and chemo agents and find something that is working. The course of Kim's MS has been changed by our finding this website.

How has TIMS made an impact on your life?
Last edited by notasperfectasyou on Tue Jun 02, 2009 10:15 am, edited 1 time in total.
It would be really nice to be able to put links in here

If I have included a bad link, google the word "Scholar", click link for "Google Scholar". Search for the name of the paper and author in Google Scholar.
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Re: An Experience of Our Own

Postby cheerleader » Mon Jun 01, 2009 7:40 pm

notasperfectasyou wrote:How has TIMS made an impact on your life?

HUGE. Beyond words. Compassion and understanding from other spouses (Ken and Bob), support and understanding from the male point of view (Lew and Robbie). Nutritional ideas from Jimmy, Gibs and Dim- with me on the trail of how the vasculature was affected by diet and nutrition. Dom's beautiful and insightful posts, and his reposting the vascular connection thread. Harry's wisdom. Dignan's superior research skills. NHE's voice of moderation. Bromley's sarcasm. Chris' enthusiasm. FRIENDSHIP. Sharon's wise insight, Marie's understanding as a medical professional. HOPE. Sarah's smarts and conviction, Arti's family fun pics, Marc and Cure and Lars and WW and the list goes on and on. And Finn in absentia. PEOPLE. Everybody here has been an inspiration at one time or another (even when I got pissed off or pissed them off...)

I cannot imagine how my husband would be if I hadn't stumbled onto TIMS two years ago...terrified, alone, and unable to talk to most people about how this disease had changed the love of my life. He's back with me now, awake, present and so very thankful. I truly believe better days are ahead.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby catfreak » Mon Jun 01, 2009 7:57 pm


That is an interesting question and I will say this:

1. I am not alone
2. There is hope
3. This disease effects me but also effects those around me
4. My words can encourage others... but
5. My words can discourage as well
6. I really believe I have met and made friends ;-)
7. MS Does not discriminate
8. We all have our own opinion - and that's OK!!!
9. We are all looking for answers and there are many here that research
10. There are many here who have already been guinea pigs for one treatment or another

These 10 things do not even scratch the surface, but it's a start.

My life has changed because of TIMS and I thank everyone here.

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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Postby whyRwehere » Tue Jun 02, 2009 6:36 am

I think without TiMS it would be very hard to be hopeful. Instead of waiting around, you can get instant information, support, answers...
I am glad to know about treatments, even if we wouldn''t consider them, it's good to know all the paths being taken and how they turned out. We've tried several therapies and will try more, and we'll share what happens...
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Postby robbie » Tue Jun 02, 2009 6:56 am

Didn’t seek out ms on the computer until I started getting much worse and now for me Tim’s is a place to come and not feel like you’re alone. I know there are millions with ms but there are times when it feels like it’s just you and this place helps me forget that. :)
Had ms for 24 years now.
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Postby Loobie » Tue Jun 02, 2009 7:50 am

I have no frame of reference to describe how much it impacts me. I'm getting ready to get elective surgery based on a theory that was although not developed on here was brought forth here, and I can just about guarantee I would know nothing of it until years down the road. Now that's HUGE for me since by then I might be far worse off. I can guarantee that I would feel far more hopeless about everything without all of you.

TIMS has 'shrunk' the world for me and brought feedback from people all over the world to me on a daily basis. I get support, information, friendship, and most of all hope. And it comes from everywhere. I think TIMS is the most constructive site I've ever been on.
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Postby coach » Tue Jun 02, 2009 8:34 am

Ditto to all the posts about how TIMS has impacted my life. Its a place to go to find invaluable information. One feels the care and support of this community because they know what you are going through because they have been there, are there. They identify with the emotions you feel, the frustrations in dealing with the medical community and others that know very little about this disease, the lack of progress in finding a cause and a cure. It's a go to place for support and for information. Thanks TIMS. Glad I stumbled on it several years ago. I've been more of a reader than one who posts a lot.
He is no fool who gives what he cannot keep to gain what he cannot lose.
Jim Elliott
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Postby Loobie » Tue Jun 02, 2009 10:01 am

To echo Coach's thoughts, this board works for the same reasons AA works. You just don't have to find that common frame of reference, everyone already knows...
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