Hi from Jeff, re. my stent treatment at Stanford

[patientx]

re. music, If you ever watch 'Monk' ... you can hear my music - I'm probably giving away my identity here,

You're really Randy Newman!?

[Jeff_wMS]

no, not Randy! I'm the 'other guy' - I do underscore - the music you hear during the body of the shows and films - here's my imdb page-
jeff


http://www.imdb.com/name/nm0063618/

[Loobie]

I just watched Pollock the other day when it was on Cinemax. I'd seen it before a long time ago, and very much like the film, but this time I really focused on the music. Awesome job on that one dude.

[peekaboo]

There's a picture of Jeff & Joan on the url above. now we know whacha look like you handsome couple you

Aslo got a clip of you (assumingly) playing the monk tune on the guitar.

[akaheather]

I'm probably giving away my identity here

Uh-Oh. Does this mean that your going to lose your super powers?

[peekaboo]

good one heather

[Jeff_wMS]

Thanks Loo. doing 'pollock' opened a lot of doors for me - I'm wishing you all the best on your upcoming tests/treatment at Stanford - given the less obvious nature of your presentation - I'll be very curious to see how it plays out.

I have to say more than 2 weeks out now - the energy level difference seems to be still much improved. Esp. during the evening hours which were always a struggle to keep awake- family time is much more lively. I'm more talkative - cheer mentions I 'seem' more like my former self socially.

One other effect I've noticed is increased appetite,- sometimes even in the middle of the night (2 or 3 am cravings) - this was esp. evident in the first 10 days post surgery.

(and cheer noticed 1st) I lost a bit of weight -about 5 lbs. We are guessing the increased blow flow is somehow affecting overall metabolic rate, or thyroid regulation...

I look forward to hearing more folks stories from the tests at Stanford, as it now seems we have a whole boatload of folks going to see Dr. Dake!!

Have a great long weekend everyone--

J

[notasperfectasyou]

Jeff & Cheer - Just wondering how the last 2-weeks have gone. Will you keep posting about your recovery here? Ken

[cheerleader]

Jeff & Cheer - Just wondering how the last 2-weeks have gone. Will you keep posting about your recovery here? Ken

Jeff's really busy with work, Ken...he's juggling a couple of filmscores and an art installation, plus Monk is starting back up. He'll try to post soon...but he's doing terrific. Fatigue is way down, no probs with heat, pain is almost all gone (occasional shoulder issue) he's working (obviously!) and energized and enjoying his new sense of alertness. Our 25th wedding anniversary is coming up this weekend...and we're so thankful for his improvements. Many things to be thankful for. He promises to check in sometime soon.
Joan

[mrhodes40]

Life does kind of go on............ its a good thing

[Loobie]

Oh if only I actually forgot to check on here about ten times a day! That would be awesome even though I love you all.

[cheerleader]

OK...so he's still really busy, and I've been online this morning. He's across the table, working on his computer and says hi. Quick update:
Five weeks out tomorrow, and it's also our 25th wedding anniversary

Jeff's still enjoying his increased energy and decreased fatigue. His shoulder/stent procedure pain comes when he walks long distances or is in one position for too long (had a tough time in church yesterday) He's been bummed that he still gets neuropathic leg pain and spasms...as he said, "Now I'm awake enough to feel it!" But it's not everyday anymore, just random.

He also doesn't want to give anyone any false hopes or illusions about cures, or the removal all MS symptoms. As we're seeing, there may be axonal damage that won't be repaired in the short-term, or ever. But he is so thrilled to have relief from that dreaded fatigue. We went out this weekend and celebrated our anniversary. Jeff also wanted to have a big party with our friends, so we're in the process of planning that together. Mexican food, margaritas, music... He's so much more social now...has the energy to visit with friends, talk on the phone, spend time with our family. That has been a huge change.

Three more weeks to the new MRIs and MRVs...we'll see what the tests say. But he's still so glad he's got his brain back. Me too!
cheer

[Loobie]

Great to hear. I mean the clouds parting and trumpets blaring (Ok, they do at your house) just isn't going to happen immediately; if it ever does. Like you said, time will tell. It took us all a long time to get to this point, I don't think that even if there is repair that happens as a result of this that it would come on any quicker than it was torn down. I mean think about demolition vs. construction. This is probably a horrible analogy, but when things are trashed, it's a much quicker process because there is no regard to how it affects anything else. However, I think repair will be more focused and thus a longer process. Obviously a much more "organized" type of thing.

Think about weight loss. It doesn't take nearly as long to gain as it does to lose. We're talking diet and exercise, not gastric bypass . So thinking about things like that, I think the one year mark will be a whole lot different when looking back. Take Tysabri. I was a full time cane user and one stair at a timer both down and up (both feet on the same tread before the next one goes up). I can't even tell you exactly when those things happened because it was so gradual. I mean looking back, I've gotten significant improvement since I started Tysabri. But you're so right, there are still so many things that are still screwed up, but I'll take the function I got back and I don't want to give it back!!!

[cheerleader]

Hey guys...
we're heading out for our trip north and family time before Jeff's 8 week check up at Stanford.
He's been really busy with work before we get away..so I'll update for him.
His brain feels clear, no fatigue, he wakes up ready for the day. Heat doesn't bring on the exhaustion. He's able to exercise and work outdoors in heat. He commented to me yesterday that his energy is still improving. Jeff still has leg pain and spasms on occasion, but the pain level is reduced and it's no longer daily. His urgent bladder issues aren't as bad, he's waking up once a night to go, rather than multiple times. Sleeping really well. The thing I've noticed most is his energy and spirit...he's upbeat and joking around and involved again, in ways that our son and I haven't seen in years.

Jeff's very aware that he doesn't want to give false hope (to himself or anyone else), and I think he's protecting himself in case the MRIs don't show any healing or show change for the worse. Every MS patient understands the heartbreak of seeing hopes for healing dashed...(I'm much more expectant we'll see healing, but I don't have the disease.) This is all such a mystery to us...but we're thankful for finding Dr. Zamboni, Dr. Dake, and the research on CCSVI. We know that this is only the beginning of a very important story. To be continued...
Joan

[mrhodes40]

Joan and Jeff, Thank you to both of you and we will all be waiting with bated breath for the results. fingers crossed!