Seems everyone knows someone who knows someone.

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

Seems everyone knows someone who knows someone.

Postby CureIous » Thu Jul 30, 2009 1:57 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:12 pm, edited 1 time in total.
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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Postby skydog » Thu Jul 30, 2009 3:06 pm

I just spent some time in the last couple of days with a man who has been dealing with ms for several years now. I had talked him into seeing Dr. Dake and he has an appointment the second week of August. He came down to where I live with a good friend, his son and daughter to meet me. We all had a great time just hanging out and chatting. It was very good for me to see someone else with very similar disability and how they handle their situation. The first thing I noticed was how focused he was on how his life used to be. To set him straight we focused on what he has and how great that really is. I pointed out that our disability was very similar, and the biggest difference was more on how we differ in dealing with it in our daily lives. I focus on what I do have and good things come to me despite my physical condition. Yes it is tough but somehow even dealing with adversity brings pleasure to me. My hope is that through my own personal journey others will see the good life that is waiting to unfold given the chance. This may take some time and only the willing will follow. Spreading the CCSVI word. Peace and Health, Mark
Plant a BIG Garden Live in the Moment
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Postby Loobie » Thu Jul 30, 2009 3:20 pm

You have an awesome attitude Mark. I hope he was changed by meeting you. It's like that book I read "Man's search for Meaning" in discussing how concentration camp inmates invariably died if all they did was lament the past, and conversely how people could survive if only they had something, anything to look forward to. You have an enviable disposition.
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Postby Jamie » Thu Jul 30, 2009 7:20 pm

My dear, dear granddad died on Monday.

I'm trying to get a flight home (Liverpool, England) to attend his funeral.

My nanna died 10 years ago, granddad who was fit as hell gave up right there and then and has been waiting to die ever since.

I'll never, ever, ever, ever, look down my nose or pretend to understand or know what people who have chronic disease or their heart broken or are raped or whatever who lament and never move their mind past how their lives were but there is sound evidence to suggest hope and desire to live can move the body past 'normal' achievements.

Its way too complex for the likes of us and stories of people with MS who 'don't let it ruin their lives and still mountain bike 10 miles and run 4 miles' well I'm sorry, that nauseates me and sets unrealistic expectations for everyone else who CAN'T do that. Who's to judge who's given up and who's the real soldier?

It's weird I agree with everyone and disagree too (and the same with myself), the emotional responses to MS by the bearer of the disease and by the people around them are more complex and variable than the disease itself.

Most of Mel's friends abandoned her, couldn't deal with it.

Those who stayed, Mel seemed to almost purposefully (subconsciously but I could observe it) alienate and stopped responding to them.

Freud would have a theory I'm sure.

Conversely, this made a man of me. I've been a selfish little prick most of my life and this was my defining moment. For the first time in my life I chose the harder course. But do you know what's amazing, it didn't feel like a choice at all. Because there was no choice, I love Mel dearly and we'll never give up.

That doesn't make anyone better than those who do though.
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Postby Jamie » Thu Jul 30, 2009 7:24 pm

I'm still not happy with the conclusion of that post, give up is the wrong phrase.

Perhaps 'lose hope' would be better but I wanted to leave the original post as evidence of how much I wrestle with this.

/<end> pomposity.
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Postby Jamie » Thu Jul 30, 2009 7:29 pm

Having said all THAT.

I do think Marc has a fantastic spirit.

In fact I think the majority of people on here have the same spirit otherwise they wouldn't really be on here would they?

It's a place for people searching for answers, for help, for people not accepting the standard answers.

That's how I see/use it of course, this place, and the internet in general is for everyone and there is a corner of it where everyone fits.

Others use TIMS for other things and that is awesome too.

I think the heat (and wine) is getting to me, I'm all emotional!
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Postby cheerleader » Thu Jul 30, 2009 8:18 pm

Jamie, I'm so, so sorry for your loss. I hope you get a flight back home pronto.

Ya know, Jeff was actually doing OK before all this came down. He was coming to acceptance with his diagnosis. I was the one that just couldn't...who kept looking for answers. He didn't want to get any false hope going. And there were hard times- when he asked me to just let him be. Was it selfishness, wanting him to feel better? To maybe heal? Could be. I think Freud could have a field day with all of us, Jamie. I guess the best thing is to be honest with each other, offer a helping hand, and not be hurt if it isn't accepted. And not to judge other people, or how they deal with illness. Kind of like grieving the loss of a loved one. Everyone does it their own way.

Cureious' point is true and very valid. We all know so many people who are affected by MS. I've been sharing the info, but not pushing it. If there's an interest, I give more. But it's been a huge lesson in sensitivity for me...and I'm still learning.
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Last edited by cheerleader on Thu Jul 30, 2009 8:19 pm, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CureIous » Thu Jul 30, 2009 8:18 pm

:)
Last edited by CureIous on Sat Oct 03, 2009 3:11 pm, edited 1 time in total.
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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Postby Jamie » Thu Jul 30, 2009 8:25 pm

cheerleader wrote:Jamie, I'm so, so sorry for your loss. I hope you get a flight back home pronto.

Ya know, Jeff was actually doing OK before all this came down. He was coming to acceptance with his diagnosis. I was the one that just couldn't...who kept looking for answers. He didn't want to get any false hope going. And there were hard times- when he asked me to just let him be. Was it selfishness, wanting him to feel better? To maybe heal? Could be. I think Freud could have a field day with all of us, Jamie. I guess the best thing is to be honest with each other, offer a helping hand, and not be hurt if it isn't accepted. And not to judge other people, or how they deal with illness. Kind of like grieving the loss of a loved one. Everyone does it their own way.
r


Mel was the same and she won't mind me saying. We even had a furious row about it on holiday once and she blurted it out. 'Just leave me to progress'.

Was I selfish in not? In twisting her arm? Probably.

Is she glad now?

Yes.

Do the ends justify the means? Who's to say.

One CAN think too much you know.

Onwards and Upwards!

Jamie




Thanks for the kind words Cheer.
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Postby mormiles » Fri Jul 31, 2009 7:33 am

This thread tastes of the dilemma which has lately colored my life as a caregiver. Steve's reaction was revulsive when I first broached CCSVI to him; he wouldn't even hear the information. After 3 years on the Vanderbilt Protocol, he was disappointed and sinking into the mindset of resignation to a fate of unchecked MS progression. Don't misunderstand, the Vanderbilt Protocol did him much good by drastically changing his trajectory of progression for the better...having no exposure in his life to those with advanced MS, he couldn't grasp that his progression had slowed way down compared to what it was before the protocol. MS being a multifactorial illness, addressing the chronic infection aspect has apparently run its course, done as much as it could do. My viewpoint was/is that other factors need to be tackled, but his viewpoint was that it was time to quit fighting the beast.

Steve finally agreed to go to Stanford, but it was only because I wanted it. That put me in a very tough spot. Should I have given in to his personal choice of resignation and adjust my expectations? Just thinking about that hurt me to the core, made me physically ill. But after all, he's the one with MS and everything that goes with it. OR, should I take charge and make the hard decision to push him into an invasive procedure he doesn't really want? After all, he has considerable cognitive dysfunction and has become depressed. Isn't it my responsibility to lead him in the right direction, because he needs a leader at this time in his life? And how much of my drive to help him is driven by pure love of him...and how much of it has to do with what I want to avoid for myself?

Thankfully, that dilemma was resolved in the most unexpected way, and Steve now actually wants to go to Stanford. Still, though, he refuses to get excited about it in order to avoid possible future disappointments. I don't blame him.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby Jamie » Fri Jul 31, 2009 8:35 am

We went through something similar.

It's hard, especially if they aren't thinking 'normally' due to severe depression but where's the line? You know?

There's no easy answer.
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