fiddler finally flying... to Poland

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

Being Careful

Postby fiddler » Wed May 05, 2010 7:43 pm

I've been warned to take it easy while exercising for at least a couple of weeks after stenting... anyone have information on that?
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby NormB » Thu May 06, 2010 12:04 pm

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Postby openmind » Thu May 06, 2010 12:15 pm

i just wanted to say that after my liberation on 18th March i was anxious to see results and actually believe that this anxiety was hindering my progress. I have now finally let go of "wanting to see results" and am believing that they will be there. I feel so much better for having done this in itself it has helped me get out of the mode of anxiety again. I have SPMS for 5 years and rr for 15 before that, i was on BBC news ( jo Chant) about going to Poland so you can see how i walked before, but now things are definately getting better in many ways. I peeled some potatoes the other night ( first time in years). Like you say it is little things and these little things iwll hopefully stack up in time to be big things for you and for me :lol: SO please if you are feeling up tight about getting the result you wish for, allow yourself to let go of the outcome now and get into some meditation to get your spirit back to where it needs to be, this has really helped me drop the fear and get the joy flowing again. All the best and I am sure you will start to see all those little things along the way. JO x
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Yes

Postby fiddler » Thu May 06, 2010 12:33 pm

Yes, Jo, I've said all along that if nothing happens but I don't get worse, then this has been a complete success. Anything else that I get is just a bonus.
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Two and an half weeks

Postby fiddler » Mon May 17, 2010 7:23 am

Well, it's 2 1/2 weeks since my liberation. My wife and friends say I look better. My energy seems to be up, but such things are hard to measure when normal symptoms can vary so much. The only "objective" positive improvement I've had is my left arm (doing a certain exercise) is much stronger than it had been for the last year or two. I'm glad I noticed and remarked on it at the time, because as time goes on I find I forget what a difference there was between my arms before the procedure, especially given that my left arm is still weaker than my right (because of atrophy, if no other reason).
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Re: Being Careful

Postby Cece » Mon May 17, 2010 10:27 am

fiddler wrote:I've been warned to take it easy while exercising for at least a couple of weeks after stenting... anyone have information on that?

I know this is a late response but this was Dr. Sclafani's advice too...something along the line of "sit around and eat bon-bons" while you wait for your stent to fully fuse into the vein lining... :)
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Inge67 » Mon May 17, 2010 12:34 pm

Hi Ted,
this sounds good though! Albeit a small inprovement, it is one for sure!

I just want to update you om my progress: today my fysiotherapist scores me for the first time after the procedure with the Berg balance scale.

It is a scale with 14 items where you can score a maximum of 56 points. Before Poland I scores 20 points, today Iscored 32 points. An improvement of 62,5% no less! That is an objective proof of my balance improvements I already noticed myself.

Made me happy.
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Good news!

Postby fiddler » Mon May 17, 2010 12:39 pm

Wahoo! Great news, Inge... you'll need that new mobility to use the steps to the beach at our cottage! :D
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
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Little improvements

Postby fiddler » Tue May 18, 2010 4:41 pm

Today, I wore a buttoned shirt for the first time in months... and I buttoned it myself. And my walking is better... better than it's been in a long while. And I've noticed a higher energy level for several days now. So, though I don't want to jinx this, and I know that there will be setbacks, it really looks like it's working for me! :D
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby Inge67 » Tue May 18, 2010 4:47 pm

:D :D :D

very very good Ted!
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Postby prairiegirl » Tue May 18, 2010 5:58 pm

Great to hear, Fiddler-- may the improvements continue for you!
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Postby NormB » Tue May 18, 2010 6:12 pm

Good news indeed Ted. I hope for you it is only the start of the recovery
phase.

Take care

Norm
'92 diag RR - '05 SP
On LDN since Sept. 2012 with better quality of life.
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Postby ndwannabe » Tue May 18, 2010 8:27 pm

Yay for Ted! Slow and steady improvement wins the race!
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Re: Little improvements

Postby mags4short » Wed May 19, 2010 3:37 am

fiddler wrote:Today, I wore a buttoned shirt for the first time in months... and I buttoned it myself. And my walking is better... better than it's been in a long while. And I've noticed a higher energy level for several days now. So, though I don't want to jinx this, and I know that there will be setbacks, it really looks like it's working for me! :D
...Ted


OMG Ted that is wonderful! I was talking to a women in Poland who said that she managed to fasten her own bra for the first time in years, I was close to tears and so was she. It may seem like a little thing to none MSers, but it is HUGE.

I really hope that this leads to other improvements.

Please keep us posted

Mags xx
Alone we can do so little, together we can do so much :)
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More signs...

Postby fiddler » Fri May 21, 2010 8:12 am

Today I went to a meeting, then did some shopping and ran some errands. I didn't bring my cane. I didn't have to work up the strength and nerve to just do one of those things... I just did them all. Yes, I still limped. Yes, my arms and hands were stiffer by the time I was done all that (maybe I did a bit too much in one go), but... I DID it! :D
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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