My friend James at Stanford

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

Postby skydog » Mon Aug 17, 2009 6:16 am

Talked with Kate late last night as she stepped off the plane in Dallas. Yesterday was quite a day for both Kate and James. Seems that all he needed was a good night sleep. He woke yesterday morning raring to go so with all the plan changes they were quite busy booking flights and making arrival arrangements. I still have not spoken with James but will sometime this morning. His parents met him on arrival back here in Oregon. So he is safe at home and being well cared for. It sounds like quite a whirlwind tour for our Dr. Dake also. Hope to here from Holly soon… Wishing Peace and Health to both our brave pioneers, Mark
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Postby skydog » Mon Aug 17, 2009 10:06 am

Just spoke with James. He sounds great !!! His mom is with him so he is in good hands. He sends his prayers to Holly. I will keep everyone abreast of his progress. Cheers, Mark
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Postby Needled » Mon Aug 17, 2009 10:11 am

Good news! So glad he's feeling better.
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Postby ErikaSlovakia » Mon Aug 17, 2009 10:26 am

Thanks for good news. I am so happy.
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby Sharon » Mon Aug 17, 2009 10:58 am

Great news Mark - glad to hear James is feeling better and that is mom is taking care of him.....moms are good caregivers :)

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Postby javaneen » Mon Aug 17, 2009 1:13 pm

great news! Glad he is doing better!
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Postby mormiles » Tue Aug 18, 2009 9:04 am

Mark, Thanks for letting us know about James. I look forward to the time when James can post for himself, and we can all get to know him.

James, God bless you and your caring family and friends,
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby MaggieMae » Wed Aug 26, 2009 12:50 pm

Mark,

How is James doing? It has been over a week since you posted.
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Postby skydog » Wed Aug 26, 2009 2:43 pm

I just spoke with James this Morning, and he sounds great. He said that his energy level is defiantly better, and he feels more alert. The other issues he has will take a lot of time to heal if at all. He is nearly wheelchair bound and legally blind. So for now I keep telling him to be thankful for the little plusses and keep a positive outlook for the future. Dr. Dake is keeping a close eye on him so he is in good hands. I feel time is now on our side with having done the much needed procedure. We were hoping to talk with our mutual Dr. this week. It will have to wait until my return from checkup visit with Dr. Dake on September 1st. Peace and Health, Mark
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Postby MaggieMae » Fri Aug 28, 2009 9:21 am

In the future, the next step (after surgery) for those whose MS has progressed may be stem cells.
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Postby bestadmom » Fri Aug 28, 2009 9:32 am

MaggieMae, I agree with you. If we can stop the attacks then we can repair.
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Postby skydog » Fri Oct 16, 2009 4:00 pm

I spoke with James last night about his return to Stanford. He is doing quite well. He had a minor tune up with ballooning of a plug in one of the five stents that were placed two months ago. Everything else looked great in fact many of the smaller lesions seen on earlier MRI'S had vanished and the larger ones diminished some. He is in great spirits and feels great. Mind is clear and fatigue is way down. Still says that his motor skills are the same if not a little worse than before the first surgery which Dr. Dake finds puzzling. Time will tell what he can gain back in that department. He is back in his recording studio today doing what he loves making music. Now you know what comes around goes around. After asking how I was doing which to be quite honest is not good he gave me the pep talk that I have always given him. Stay positive! Wow did that make me feel good coming from my dear friend James. Peace and Health to All, Mark
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Postby Loobie » Fri Oct 16, 2009 4:27 pm

Good to hear Mark. I pray that you are next. You deserve it. You have one of the most indominatable spirits I've seen on here, or anywhere for that matter. I can't tell you to keep your chin up because I know that you do that better than most. Just know we're pulling for you. Do you have any follow up stuff scheduled?
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Postby bluesky63 » Sun Oct 18, 2009 9:14 pm

I am reading this and sending all the best energy to your friend! I am really interested in how this turns out for someone with more disability. For my part, I know I would be grateful to have the mental clarity and lack of brain fog, even if the mobility were still an issue. (I have used a wheelchair for years.) I also have young children and I know how great it is to be there and be active and alert and really a meaningful part of your family's whole life -- I hope everything goes great for James!
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Postby Rokkit » Mon Oct 19, 2009 8:53 am

skydog wrote:Everything else looked great in fact many of the smaller lesions seen on earlier MRI'S had vanished and the larger ones diminished some.


Am I reading this right? Isn't this enormous news? Or do lesions tend to do that anyway. I've never had the lesions on MRI so I have no experience with that.
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