fiddler finally flying... to Poland

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

Postby mangio » Fri May 28, 2010 11:54 am

Thanks S.K. for your words of wisdom. I have been following a group
of people that have returned home, some stunning results, others
milder. Maybe it has alot to do with time-line of the disease and damage.

But one story that has really captivated my imagination is the nurse
from the prairies (blogging from overseas) that is reporting a change of eye color post liberation. Really interesting. How is it possible!?!
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Postby NormB » Fri May 28, 2010 12:38 pm

She lost her eye contacts.:)


Sorry I just felt the urge.



Take Care all


Norm
'92 diag RR - '05 SP
On LDN since Sept. 2012 with better quality of life.
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Candian walk for CCSVI awareness / fund raising.

Postby Brightspot » Fri May 28, 2010 12:49 pm

Hi Fiddler (aka Superman Lite)

Congratulations and thanks for your reports of progress! Hope to be reading of more and more gains.

Your idea for a CCSVI walk or pilgrimage is very interesting to me. I have been thinking about the number of Canadians who cannot aford to pay privately, or to leave the country to obtain testing and treatment, and wondering what kind of protest might be effective. I think every community has persons with MS and in larger centres there are many of us. A walk could qualify as a protest, an event to raise awarenss, and a possible frame for local groups to do some fund raising around.

Someone from the east coast of Canada sent me an email saying that he was almost ready to jump in his wheel chair and head for New York.

That made me wonder if we should be doing a walk across Canada, and for those who are able to continue from a european landing point to Poland.

Persons who cannot afford to travel could register to take part as the walk procedes throught their own province, community or neighbourhood. They could take on a section to walk, or ride which could be as long or short as they chose. Local fundraising could remain small and local so that no big infastructure would be required. Awareness events could be organized by the participants and / or their supporters in the communities where participants live.

It would be a logistical challenge, but perhaps we could look at the idea of reversing the route of the Olympic Torch on something. It could happen with as much or as little publicity and support as is available in each area. It could be planned out to take place over several months, as, sadly, I think we will have a long wait here in Canada unless the Parliamentary Committee on Health is able to make something happen.

Comments?
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Brilliant

Postby fiddler » Fri May 28, 2010 1:20 pm

That's a great idea, Brightspot... and the power of the internet, which has been the main instrument for making CCSVI and Liberation treatment known, can be used to help coordinate people and keep the organizational costs low. I especially like the idea of building it upon grass-roots, local involvement... Perhaps you could start a facebook page to raise interest in your idea, and see if it doesn't grow organically.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Call it...

Postby fiddler » Fri May 28, 2010 1:22 pm

Maybe the facebook site should be called "The Liberation Walk" or something like that.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby Brightspot » Fri May 28, 2010 1:57 pm

Great suggestions Ted.

I am not a member of facebook, or any other social media group, but perhaps someone who is will read this and become inspired. Will keep brainstorming ideas to move the idea along. Perhaps I will I will forward the idea to some of the grass roots organizations like msliberation to see what they think.

Anyone reading this, please feel free to forward the suggestion to any person or group who may be interested.
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The Market

Postby fiddler » Sun May 30, 2010 7:17 am

Yesterday I did all the shopping at the market... myself... and without a cane, the first time I've been willing to take that chance since sometime last summer, I think. In the afternoon I vacuumed the apartment and after that was tired and my arms felt like they're filled with lead. Continuing, small repetitive motions still seem to tire me out extraordinarily quickly... guess I'll have to leave the apartment cleaning to my wife a while longer! :wink:

Yes, brightspot, I'd be happy to work with someone who would like to begin organizing a walk across Canada to raise awareness for CCSVI. Perhaps this could be part of an international network of CCSVI walks, but there's no reason why we couldn't start planning this independently of any other walks going on elsewhere.

...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Re: The Market

Postby Zeureka » Sun May 30, 2010 4:40 pm

fiddler wrote:Yesterday I did all the shopping at the market... myself... and without a cane, the first time I've been willing to take that chance since sometime last summer, I think. In the afternoon I vacuumed the apartment and after that was tired and my arms felt like they're filled with lead. Continuing, small repetitive motions still seem to tire me out extraordinarily quickly... guess I'll have to leave the apartment cleaning to my wife a while longer! :wink:

Yes, brightspot, I'd be happy to work with someone who would like to begin organizing a walk across Canada to raise awareness for CCSVI. Perhaps this could be part of an international network of CCSVI walks, but there's no reason why we couldn't start planning this independently of any other walks going on elsewhere.

...Ted
Wow Ted! What a great shopping experience :D Also prefer shopping to vaccum cleaning :wink: of course get your point that more exhausting for sure - just joking...but fortunately I have my daily super automatic help: my dear I-robot friend Roomba (can only recommend it!) and once a week a cleaning lady.
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5 "weekiversary"

Postby fiddler » Thu Jun 03, 2010 5:56 pm

It's now five weeks since I was liberated, and I'm definitely feeling stronger... in my walking, in my exercises, in the energy I have to do things, I continue to see small improvements. They come slowly, in dribs and drabs, they sometimes regress, but overall I continue to see a gradual improvement in my strength, my balance and my endurance. Today was another good day.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Objective measures

Postby fiddler » Mon Jun 07, 2010 10:23 am

I was at the rehabilitation centre this morning, having my mobility and balance tested against the benchmarks set a few months ago. Despite still being sore and a bit stiff from Saturday's work at the cottage, I did score a bit higher in this series of tests. Although it was only a bit better than I might have done on my better days before "liberation", it is still trending the right way. Let's hope that this keeps up! Oh, and I haven't used my cane for the last couple of weeks, which is also a good sign.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby 1eye » Mon Jun 07, 2010 3:55 pm

Good stuff! I have always said "stop progression and I'll do the rest." I am up against age, though. But if Les Paul can play into his 90's...
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Vhoenecke » Mon Jun 07, 2010 5:50 pm

That's great news. The small improvements with MS are huge in my books.

Val
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Poland

Postby BN458 » Mon Jun 07, 2010 8:54 pm

Good luck and please keep me posted. I heard last week by email from Poland that I was accepted for sometime in July or August. Any advice on travel arrangements/hotels/how long to book for? Thanks.
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Poland

Postby BN458 » Mon Jun 07, 2010 8:55 pm

Good luck and please keep me posted. I heard last week by email from Poland that I was accepted for sometime in July or August. Any advice on travel arrangements/hotels/how long to book for? Thanks.
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Re: Poland

Postby Zeureka » Tue Jun 08, 2010 12:59 am

BN458 wrote:Good luck and please keep me posted. I heard last week by email from Poland that I was accepted for sometime in July or August. Any advice on travel arrangements/hotels/how long to book for? Thanks.
Hi BN458 - if its Poland Katowice Euromedic team: the hotel they will book for you and the flight you can only book (yourself) once they gave you the precise dates - Marta generally sends an e-mail start of the month before the month you're scheduled (in my case was informed first week April for end May). Generally the minimum journey is around 6 days/5nights, but some come a bit earlier or stay longer also due to travel arrangements.

First day(s) for eye test/MRV and 1 day + night hospital procedure. The doppler performed in hospital (morning of procedure) or days before.
They recommend to stay there 2-3 days after the procedure (just in case that you can consult if problems - although noone in my group really needed it) and you will be in hotel those days.

Wish you all the best!
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