Not Johnson?

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

Not Johnson?

Postby eric593 » Mon Jul 26, 2010 11:05 pm

Does anyone know if Not Johnson has a blog, or what's happened since his trip to Poland, how he's doing? I've not seen any updates in quite some time.
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Postby Camilla » Tue Jul 27, 2010 6:17 am

Yes -- was wondering too.
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Postby prairiegirl » Tue Jul 27, 2010 10:13 am

...have been wondering also. If you're checking in, Johnson-not, hope you are doing well...
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Postby newfie-girl » Tue Jul 27, 2010 11:33 am

actually when you think of it there are quite a few of the old timers that were very active on this site that had the procedure and have gone off the radar :o

Hope they are all doin fine, I don't want to signal out anyone but you all know who you are.......love to hear some updates....lets see what happens?
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Postby Rici » Thu Jul 29, 2010 10:59 am

Hi
I wrote an email to Johnson. I have no answers.
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Postby newfie-girl » Thu Jul 29, 2010 12:38 pm

Rici, that is strange, I hope all is well with him? :(

How are you doin my friend?
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Postby Rici » Tue Aug 03, 2010 1:54 pm

newfie-girl wrote:Rici, that is strange, I hope all is well with him? :(

How are you doin my friend?

Hi
I got an email from Johson.
He has a lot of work in the garden. He is "almost" well "
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Postby Guider » Tue Aug 03, 2010 4:58 pm

Ricci,

Thank you for posting that. I too was wondering how he was doing.

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Postby costumenastional » Tue Aug 03, 2010 11:13 pm

Rici thank man!!! I was really worried.
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Postby sbr487 » Tue Aug 03, 2010 11:21 pm

I guess (NR) Johnson is spending time in doing things he has missed the most ...
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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Postby Drury » Wed Aug 04, 2010 10:49 am

Ricci.

Thnks for the update about Johnson. Great news that he is feeling well and busy - also wondered about others too. Hopefully they are enjoying full and happy lives since their treatment.

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Postby eric593 » Wed Aug 04, 2010 12:42 pm

Thanks for the update! I thought he had said that when he returned, he was going to be launching a lawsuit and working hard for access here. So it seemed strange that there hadn't been any word at all since beginning of July after his procedure.
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Postby Johnson » Sat Aug 07, 2010 3:14 pm

I heard that my absence has not gone un-noticed. Sorry to leave you all "up in the air".

I have been scarce on TiMS because I am so busy in the summer, but I have filled out the tracking thread (page six), and am trying to get to writing a report. That should come soon. Look for "The Polish Patient, featuring Johnson."

I'm still better than I was before the treatment, but it's not over yet for me. I have been in a slow decline since having the treatment. (feels like restenosis to me)

It is raining here this week-end, so my outdoor work has been precluded. I will do my best to write a report very, very soon.

Eric - there won't be a law suit until I feel better again. I don't have the energy for it right now, and it will be hard to convince a judge that I ought to be re-imbursed for a treatment that has not been entirely successful.

More, later.
My name is not really Johnson. MSed up since 1993
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Postby Guider » Sun Aug 08, 2010 11:35 am

Johnson,

Thank you for the reply. Continue to do the things you want to do, but, please don't forget us! We appreciate any time you give to us and this forum.

Best wishes,
Guider
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Postby eric593 » Wed Aug 11, 2010 1:21 am

Good to hear from you.

We could guess that your outcome was not entirely successful as those with amazing results seem to become even more outspoken activists towards changing accessibility, they are yelling it from the rooftops and in the newspapers.

With such a high re-stenosis rate, there are many many reports such as yours coming out. It just makes local treatment even more pressing so that we at least have follow up care here. Hopefully the work so many of us are doing to pressure those in control will help bring it here sooner. The more doctors treating us, the more they learn, and the better able they'll become to hopefully lower re-stenosis rates. With BC being silent until after their meeting this week, we need all the help we can get in convincing government, regulatory bodies and the MS Society to allow it here. All voices and keyboards are urgently needed to press for local accessibility.
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