This Is MS Multiple Sclerosis Community: Knowledge & Support

Welcome to the world's leading forum on Multiple Sclerosis research, support, and knowledge. For over 10 years, This is MS has provided an unbiased community dedicated to Multiple Sclerosis patients, caregivers, and affected loved ones.
It is currently Fri May 24, 2013 5:24 am


All times are UTC - 8 hours [ DST ]




Post new topic Reply to topic  [ 8 posts ] 
Author Message
 Post subject: An Experience of Our Own
PostPosted: Mon Jun 01, 2009 6:53 pm 
Offline
Family Elder
User avatar

Joined: Thu Feb 09, 2006 4:00 pm
Posts: 772
Location: Northern Virginia
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?

_________________
My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />


Last edited by notasperfectasyou on Tue Jun 02, 2009 10:15 am, edited 1 time in total.

Top
 Profile  
 
PostPosted: Mon Jun 01, 2009 7:40 pm 
Offline
Family Elder
User avatar

Joined: Mon Sep 10, 2007 3:00 pm
Posts: 4682
Location: southern California
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.
cheer

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


Top
 Profile  
 
 Post subject:
PostPosted: Mon Jun 01, 2009 7:57 pm 
Offline
Family Elder
User avatar

Joined: Sun Jun 01, 2008 3:00 pm
Posts: 791
Location: Mississippi
WOW! HOW HAS TIMS IMPACTED MY LIFE?

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.

Cat

_________________
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.


Top
 Profile  
 
 Post subject:
PostPosted: Tue Jun 02, 2009 6:36 am 
Offline
Family Elder
User avatar

Joined: Mon Oct 03, 2005 3:00 pm
Posts: 902
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...


Top
 Profile  
 
 Post subject:
PostPosted: Tue Jun 02, 2009 6:56 am 
Offline
Family Elder
User avatar

Joined: Thu Jan 27, 2005 4:00 pm
Posts: 1148
Location: Northern Ontario, Canada
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 over 19 years now.


Top
 Profile  
 
 Post subject:
PostPosted: Tue Jun 02, 2009 7:50 am 
Offline
Family Elder
User avatar

Joined: Mon Sep 11, 2006 3:00 pm
Posts: 2197
Location: Dayton, Ohio USA
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.

_________________
http://myhopefuljourneyintoactualmsreco ... ogspot.com


Top
 Profile  
 
 Post subject:
PostPosted: Tue Jun 02, 2009 8:34 am 
Offline
Family Elder
User avatar

Joined: Wed Jun 02, 2004 3:00 pm
Posts: 201
Location: georgia
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.
Coach
____________________________________________________________
He is no fool who gives what he cannot keep to gain what he cannot lose.
Jim Elliott


Top
 Profile  
 
 Post subject:
PostPosted: Tue Jun 02, 2009 10:01 am 
Offline
Family Elder
User avatar

Joined: Mon Sep 11, 2006 3:00 pm
Posts: 2197
Location: Dayton, Ohio USA
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...

_________________
http://myhopefuljourneyintoactualmsreco ... ogspot.com


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 8 posts ] 

All times are UTC - 8 hours [ DST ]


Related topics
 Topics   Author   Replies   Views   Last post 
There are no new unread posts for this topic. HELP: Does anyone with the MS Hug have experience with SCS?

HappyPoet

6

593

Thu Jan 19, 2012 3:33 pm

HappyPoet View the latest post

There are no new unread posts for this topic. Does anyone experience dizziness?

LindaR

7

1865

Wed Jan 23, 2008 5:16 am

Wonderfulworld View the latest post

There are no new unread posts for this topic. Experience Project

dignan

5

1602

Mon Jun 01, 2009 6:43 pm

notasperfectasyou View the latest post

There are no new unread posts for this topic. What's your experience with cooling vests, etc.?

art

8

2161

Mon Aug 06, 2007 9:31 am

gwa View the latest post

There are no new unread posts for this topic. Personal Provigil Experience

[ Go to pageGo to page: 1, 2 ]

CureOrBust

21

3301

Sat Dec 29, 2007 3:41 pm

peacecat View the latest post

 


Who is online

Users browsing this forum: No registered users


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum

Search for:
Jump to: