Going to Katowice, Poland from June 23-30

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

Postby JoyIsMyStrength » Mon Jun 14, 2010 7:56 pm

Hi Jozee, I will add you to the list! :)

Billmeik, THANK YOU for the practical advice. I am working on a list of things like this, pearls of wisdom for the journey. Anyone interested, let me know and I'll send it to you for what it's worth. Might save you some time and effort.

I've enjoyed your blog!

Pam
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'practical advice' list....

Postby nagsy » Mon Jun 14, 2010 11:31 pm

Hi Pam,

I am taking my wife Sandi along on the 22nd June to Katowice - could you possibly send me your 'practical advice' list please?

I've haven't been an active member on this board and only relatively recently started using it again - but I have been doing as much as possible with ms-ccsvi-uk :D

Cheers,

Pinda (Using 'Nagsy' as my login since 'Pinda' was already taken).

PS Both scared and excited....
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Postby JoyIsMyStrength » Tue Jun 15, 2010 4:10 am

With pleasure, Pinda! Still working on it but will find a way to make it downloadable very soon so anyone who wants it can have it. I hadn't originally planned on it being a public document so some of the things on it might be important to me but not to you; however there are some practical things like restaurants that were recommended, deciphering the drugs that are administered, etc.

Welcome to the party, Sandi and Pinda!

Pam
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Postby colmmc » Tue Jun 15, 2010 4:14 am

Hi Pam
Please send your list to me I've not even thought what I need to take.
Only my screwed up veins, and smelling salts obviously ( for all the fainting I'll be doing)
Colmmc
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Postby JoyIsMyStrength » Tue Jun 15, 2010 4:25 am

colmmc, you're not going to faint. All your buds will be there to cheer you on, catch you if need be, and set you right again. I often get tickled at church as often when I need help the person who is most helpful (let's just say she has good radar) is the one who is partially paralyzed on one side due to a stroke. We joke about cripples helping cripples. OK maybe that's a bad choice of words but it's just between us girls and it makes us giggle.

:D
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Postby JoyIsMyStrength » Tue Jun 15, 2010 4:53 am

I forgot to tell everyone! I wanted to have pre-procedure testing done states-side according to Zamboni protocol which includes a 25 ft. timed walk, timed peg test, and cognitive (math) test, and I wanted it done in a clinical setting to help silence the skeptics. That way the post-procedure "me" can be compared a bit more scientifically with the new improved "me." My neuro office was kind enough to comply so now I feel much more ready.

I would encourage everyone to do the same if possible but you'd better hurry if you're leaving next week. It just makes sense to me with all the "anecdotal" evidence and talk of placebo effect.

If you can't do it, then as a compromise you could try having someone film you doing something similar. Measure off 25 ft, and use whatever ambulatory aids you must have (I can't walk at all without support so used a rollator). Have someone time you walking the distance, stop the clock, turn around, then time the walk back. Be sure you can replicate this after the procedure -- same person timing you, same time of day, etc. If 25' isn't feasible use a different measure. The main thing is to be consistent. I think.

For peg test, if I had been unable to do it at the neuro's, I would have taken 12 pennies, and had someone time me picking them up one by one, dropping them into an empty egg carton, then picking them up again, first with dominant hand, then the other. It's not the same but it can still be used to document "before" and "after." If you drop a coin you have to start over. Again I would film it. No practicing in advance. Get someone else to set it up for you.

The cognitive test is a bit more difficult because it was a measured recorded voice calling out numbers. I'm not sure how to replicate it well and I don't think it's a good idea to use the "real" one (which can be found online) as it could lead to being accused of memorizing it in advance. Maybe someone has suggestions. (I wouldn't be so paranoid if everyone weren't out to get me.)

Just some ideas!
Pam
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Postby colmmc » Tue Jun 15, 2010 1:31 pm

JoyIsMyStrength wrote:colmmc, you're not going to faint. All your buds will be there to cheer you on, catch you if need be, and set you right again. I often get tickled at church as often when I need help the person who is most helpful (let's just say she has good radar) is the one who is partially paralyzed on one side due to a stroke. We joke about cripples helping cripples. OK maybe that's a bad choice of words but it's just between us girls and it makes us giggle.

:D

Pam
Your right ,Faint me and miss some of this no chance, It's just the way I get through the day at the moment . Joking Pretending to be hopeless. Well not from next week.Bring on your needles you don't scare me, But you might fix me.
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Postby JoyIsMyStrength » Tue Jun 15, 2010 2:22 pm

Oh I suspected as much. I'm quite fond of humor so look forward to laughing with you, col!
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to Pam

Postby hwebb » Tue Jun 15, 2010 2:41 pm

Pam,
please check your PM's. Your MRV is the same as mine.
Helen
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Postby Habenoughyet » Tue Jun 15, 2010 3:50 pm

Friends, fellow MS'ers and caregivers,

If you are headed out to Katowice during the week of the 21th of June to whatever date, so that you could recognize me (... cause I think the "I'm the one with the limp", good one col!! :lol:, wouldn't work... ).

Here is my facebook page, with picture, so you would be able to recognize me...
http://www.facebook.com/home.php?ref=home#!/profile.php?id=1340779419

I hope to meet each and every one of you courageous, and wonderfully liberated people...

Peace

HEY
"Never argue with stupid people... They bring you down to they're level and beat you with experience"
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Postby facetspera » Tue Jun 15, 2010 7:14 pm

Hik please add two more for June 25th. Diana and Sydney are arriving to get the procedure with Diana's sister.
I'd love to get the list of tips, I've tried to follow and write down everything but I'm sure I missed some stuff.
Sydney and I are going to stay for a couple of weeks after the procedure. I was wondering if I should bring my foldable bathchair. Any opinions? I'm now in a scooter and hace used a bathchair for a few years because of my balance.
Look forward to meeting you all.
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Postby JoyIsMyStrength » Tue Jun 15, 2010 7:27 pm

Hi facetspera, thanks for posting and welcome! Did you request a handicap room? If so you may not need the bath chair, you can always ask though. I have a handicap room at the Qubus (Marta booked it) but if there are none left and you need it I can get help from my husband so don't be shy to speak up. We can trade rooms.

Which reminds me... I forgot to request non-smoking. I will totally not be able to sleep if I get a smoking room, I know that sounds fussy but my nose is very easily irritated. Anyone have any comments about how things are arranged over there? I can check with Marta, just wondering.

Pam
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Catheter during treatment.....

Postby nagsy » Wed Jun 16, 2010 7:26 am

Hello all,

Just thought I would share this with you.....

A friend of mine advised the following:
"Depending on how mobile Sandi is, and how 'lively' her bladder may be, she may or may not want a catheter during the procedure. If she doesn't then she needs to tell the nurses as soon as they have her on the table - because the first thing they will do is insert a catheter.
If she does not want one she needs to be prepared to tell them at that point and be able to either not need the loo for at least 4 hours after or be able to manouvre on the bed pans which are not too comfy. You are allowed up after 4 hours, but it might be different if the procedure takes place late in the day. We were all (4) done quite early, then after the 4 hours we were given dinner (and breakfast next morning). If using a catheter its a good idea to take cranberry tablets with you to guard against a UTI which is always a possibility with catheters anywhere. The catheter can come out as soon as you can get out of bed."

Pam - can you add/mention the above in your list please.

Cheers,

Pinda
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Postby JoyIsMyStrength » Wed Jun 16, 2010 9:42 am

Excellent point, Pinda. Not to get too personal but I would worry about, um, leaking without a cath... but I hate caths so we already thought about requesting an Rx for Cipro from my GP, to have on hand just in case. An even better and more natural idea is to take d-mannose, available at health food stores. Here's some info:
http://www.drmercola.biz/2009/05/d-mann ... -from.html

I'll add all of this to the list, which I should have available sometime this weekend.

WE are going prepared, gang! 8)

Pam
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Postby Vhoenecke » Wed Jun 16, 2010 6:37 pm

That's the 5% that don't have CCSVI. I had my docs but they were never asked for.
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