A CCSVI Patient Log: All About Steve

[mormiles]

Four weeks post-op: Whispers, subtleties, nuances of improvements are happening. There are dreams here and there, spurts of energy now and then, eyesight clear most of the time now, staying awake most of the time through the day and evening, restless legs practically gone, bladder function better on some days. Even Steve's balance is slightly better. We saw my mother and sister over the weekend, and they both were of the opinion that Steve's symptoms are improving---the input of someone who sees an MSer infrequently is very helpful, especially non-patronizers.

Steve cooked on Saturday night after Mass---barbecued ribs and a carrot cake from scratch. Granted, I helped, but he never would have had the stamina to do that much in the evening before the stents.

Yikes! I forgot something. Steve's muscle wasting is reversing! No more pruny upper arms and upper thighs!

[CRHInv]

Awesome! I am so glad you are seeing some improvements!

[mrhodes40]

Way to go Steve! Hell have to be the chef for our 5 year barbecue reunion eh?

[Sharon]

These are all great improvements -- isn't it nice to feel like Steve is going in a positive direction? Like you said

Whispers, subtleties, nuances of improvements are happening.

Good news for both of you

Sharon

[jay123]

Is Steve doing PT or working out to build up those 'guns'?

[mormiles]

Hi Jay, Yes, he's using the older type up & down stepper (13 min.) and light weight training 2 -3 times a week. If you read what I posted in the previous weeks, you'll see why I commented on your poll thread that it's very dependent on time passed since the procedure.

Hey gals, thanks for the cheers!

[Lyon]

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[jay123]

Yes, thats ^ what I was wondering too - because I knew Steve has been pretty sick since the operation, I didn't think he would have been working out yet.

[mormiles]

Steve was exercising consistently before the procedure and resumed it again about 1-1/2 weeks after with Dr. Dake's blessing on keeping it light with the weights. No problem there; he hasn't been doing any heavy lifting for quite some time. His time on the stepper is a few minutes longer now than before the stents. Interestingly, the steppers he uses are the older type up-and-down steppers---he can't manage the elliptical steppers at all.

[Loobie]

I'm the exact opposite. I can do the elliptical, but not the up and down. I can do it, but only for a couple of minutes.

[chrishasms]

123

[bluesky63]

This is so encouraging to read. You must be so emotional to see Steve coming back.

I think one way it might make sense to look at it is the way you think of rehab after a stroke -- you hope you've stopped new damage and now you have the beautiful opportunity to rebuild new pathways without further deterioration. (This is not original, of course!) Many therapists who work with MS do not necessarily have this attitude, but if you can find someone who does you will come a long way.

[CRHInv]

Whispers, subtleties, nuances of improvements are happening.

Hey Joyce! I hope you guys are well. Are any of those whispers getting louder? My fingers are crossed! Beth

[Dovechick]

Hi Joyce,
I have literally just found my way here and my interest is peeked. It is great to hear that Steve has made progress with this procedure. Ella has been unable to continue with the protocol because of aneamia and I was looking for ways of containing the MS. It was a google search to do with circulation that brought me here. I'm hoping that she will be able to start the protocol again shortly but this had added another level of interest to the puzzle.
I missed our conversation and happy to have bumped into you again in the search for improved health for our loved ones.
Michele

[mormiles]

Hi all. Michele, my dear old friend, so happy to hear from you. So sorry to hear about Ella's anemia. It must seem to you (and her) sometimes like she's a trouble magnet.

Steve and I have been going through some dark times since the last update. In late October, Steve's personality changed suddenly. He became irritable, nasty tempered, even mean. On November 2nd, he had a sore throat about half the day and felt lousy. We saw his neurotologist on November 4th, and after testing the elements of Steve's balance and a discussion of the changed behavior and sore throat, he made a clinical diagnosis of H1N1 based on his recent experience with other patients. So Steve has done a course of Tamiflu---he was already taking Amantadine, thank goodness, or this flu could have been much more serious.

Well, it's been serious enough for my taste. Steve regressed badly, and he's been bouncing back since a few days after starting the Tamiflu. It's been very rough, though, with wildly fluctuating MS symptoms. He's been sleeping alot again, gone foggy, his balance has been atrocious, and his bladder function has wavered from "won't" to "non-stop." This Monday was a fair day, but yesterday morning he called me at work to get a phone number, and it was like talking to a drunk who was about to lose consciousness. It took a couple of minutes just to get the number across to him, and the whole time he was fumbling, fading away, and accidentally punching keys on the phone. He called back a couple of hours later because he had written the number down wrong. Today seems like a fairly good day again.

So, I guess this is a test of what happens to a newly stented MSer who gets zapped by H1N1. I sincerely hope this doesn't happen to you. It's very disheartening. I'm hopeful that that really is a light at the end of this tunnel, but frankly, it's about as bright as a small appliance bulb right now.

And Lew, your lastest blog helped alot.