CCSVI on NPR

http://www.npr.org/2011/01/31/133247319/doctor-challenges-cause-of-ms-and-treatment&sc=nl&cc=es-20110206

just click the link to listen to or read the story. nice overview.

Jet stalks the pooping Chewla

backyard sky

My First Post

So, my first post is lazy. John thinks I should post some writing, so here's a short story I wrote for an NPR contest. They supplied the first and last lines and the story had to be under 600 words. To read other entries go to: http://www.npr.org/series/105660765/three-minute-fiction

Enjoy!

Some people swore that the house was haunted. Most still do. They’re right. I should know. I'm the one who haunts it. Although I know the whole rattling around the house by oneself thing sounds lonely, I really don't mind. Most of my life was spent alone, so why should my afterlife be any different?

Actually, all the time alone is probably the reason I'm still here. So much time spent in this house. I think I became bonded to it somehow. After the fall down the stairs, I expected to go somewhere. I don't know where. Maybe someplace with bright lights and harp music. But instead, I'm just here. The same place I've been since I moved in 37 years ago.

Don't get me wrong. It's not that I was agoraphobic or anything. I did leave the house. Just not very often and usually not for long periods of time. I went to the grocery store to pick up the food I had ordered. To the library to check out the books I had reserved. To the local diner to get the meal I had ordered to go.

So this house became my life. And now my afterlife is this house. I am bound to it. Couldn't leave if I wanted to. Don't ask me why. The expected magical answers never appeared. I wasn’t given a Handbook for the Recently Departed.

I hadn't been dead long when the house went on the market. I knew it wouldn’t stay there for long. A real estate agent showed the house to numerous people who seemed unimpressed. Then to a nice older gentleman who was quite interested. What if he moved in? Could I handle living with someone after all this time alone?

The next week, my fears were realized. The realtor’s sign that was stuck in the yard disappeared one day and a moving van showed up the next. I appraised every piece of furniture as it came through the door. At least this guy has good taste, I thought. Antiques and solid furniture. None of that flimsy IKEA stuff.

Despite my apprehension, over the next few months I adjusted to having a roommate. To my total amazement, the companionship was kind of nice. If you could call it that. It's not like we talked or anything. However, I could tell sometimes he thought he wasn’t completely alone. He would occasionally get a chill when I passed by and he’d look around or call out to the empty room, "Is someone there?"

We lived together, mostly unbeknownst to him, for three years. As it turned out, he was a homebody also. He didn't watch much television. But, he had a huge collection of blues records which I grew to love. He spent hours reading. Sometimes I peeked over his shoulder but it seemed to make him uneasy.

Halfway through that third-year, the man returned from a doctor's visit. He dragged through the door. Apparently, he hadn't received good news. Over the next few months, the man grew feeble. He took pills for a while but they only seemed to make him sicker.

One night as I watched him, he began to gasp. I moved closer. He looked at me. "Are you an angel?"

"No. I don't think so. You can see me? And hear me?“

"Yes," he replied. "What happened?"

"I think you're dead. I guess I should welcome you."

I explained what I could, which wasn't much. He took the news surprisingly well. Almost as if he had been waiting for it.

Nothing was ever the same again after that.

Long time no blog

Hey everyone, just a quick note to say we're still around and hope to be making more frequent updates to the blog. Decided to make this about whatever we feel like at the time, Courtney will be putting up some pictures and videos, and who knows perhaps if you beg her she'll start putting up some of her fiction writing......

Until next time, farewell, and welcome back.

-John

What's up: A Brief

Well it's been a while since my last post, and if you’re anxious for another lengthy diatribe I’ll apologize in advance. This will have to serve as an appetizer to the main course to come in a few days.

Courtney is doing well, going through a 3-day treatment of steroids a couple of months ago seemed to calm her latest symptoms, no more dizzy spells, the ataxia in her right hand is way better, and according to the neuro visit on Thursday her right leg is stronger than it was last visit (no surprise as she was having an exacerbation last visit).

About 6 weeks ago we found a new rent house which was just a few doors down from some really great friends, cut my drive to work in half, and put us about 15-20 minutes away from all our old college friends. After a month of packing and a couple of weeks of moving we finally are in the new house, mostly unpacked, and loving it! We’ve had more visits from friends in the last 2 weeks here at the new place than we did all of last year it seems…..kinda nice being closer to civilization again!

No news on the CCSVI front, we’re still on a waiting list for a Dr. As of now Court is back on the daily Copaxone shots, is doing her stretching exercises and riding the recumbent bike every day.

We’re doing well, loving life in the new house. Still have some unpacking to do, but once we get fully settled I’ll be back with regular posts for your edification.

BTW, we’re planning on having a house warming party/bbq on Saturday July 3rd. Any and all are welcome to drop by, just shoot me an email and I’ll send you the directions 

Cheers,
John

Live Web Conference - What do we know about CCSVI with a star-studded cast

Today was an important step forward in the education of the masses in regards to CCSVI.  At 12pm EST there was a live web-cast sponsored by the National Multiple Sclerosis Society and American Academy of Neurology, with a panel that included: 

Dr. Paolo Zamboni, Director, Vascular Diseases Center, University of Ferrara, Italy

Dr.  Robert Zivadinov, Associate Professor of Neurology, University of Buffalo, State University of NY

Dr Andrew Common, Radiologist in Chief, St Michaels Hospital, University of Toronto, Ontario, CA

Dr Aaron Miller, Professor of Neurology  & Directory of the MS Center at Mount Sinai, NY

There was a live audience of members from various news and print media organizations, and it was broadcast internationally over the web.  The session was moderated (quite well I thought) by Jay McBride.

Its a little under 2 hours long, you can watch the recorded webcast HERE.

Overall I was quite pleased with the webcast.  There were some very interesting facts put forth, and at times the tension was quite visible.  Once I’m able to go back and watch it again I’ll try and dissect some of the specific comments made, but for the time being here are the highlights:

• Dr Aaron Miller was not dismissive of CCSVI, he absolutely said it’s an avenue or ‘lead’ that should be followed.  He talked about current MS therapies and how they have shown for years to help MS patients and that he did not think MS patients should be abandoning their current therapies for CCSVI diagnosis and treatment.  Dr Miller mentioned a couple of times that the MS society was going to be funding new studies into CCSVI (to be announced in June), and that work in these studies should be starting in July.

• Dr Zamboni talked about his studies to date, and some of the studies they are currently working on and hope to get started with soon.  He talked about CCSVI, what it is and how they are diagnosing it.  One of his slides displayed percentages of MS patients vs healthy controls that have tested positive for CCSVI in various geographical regions, which was overwhelmingly supportive of a MS-CCSVI correlation globally.  He took a very aggressive question on the relation of iron deposition to MS and other diseases like Parkinson’s and Alzheimer’s, and from my non-medical background seemed to knock it out of the park – actually looking a little aggressive himself which was nice to see.  He expressed concern at patients getting treated without the right doctors and proper procedures being followed, yet made a heart-felt plea at the end for Neurologists to use compassion in working with IRs to help patients who have no other treatment options.  Multiple times he talked about angioplasty being safe, and repeatable, that the Azygos vein responds extremely well to ballooning and that the position of the jugulars could very well present other treatments options (more traditional surgery perhaps) if restenosis keeps happening.  Overall I think it was his best presentation to date and will easily be the most viewed in a relatively short time as many reporters as there were there.

• Dr Common talked more about Interventional Radiology itself and the venous system.  It was a good balance and very informative as many MS patients and families will have more limited understanding of this anatomy.  He has not treated any patients for CCSVI, but is getting many calls by MS patients to offer the Liberation Procedure.  He shared some of the potential complications of angioplasty and stenting (actually made an interesting comment, saying the one patient who had a stent migrate to his heart didn’t need to, but had open heart surgery….the didn’t need to part was a first I’ve heard on this individual case).  I don’t think Dr Common was asked to provide much more info than he did, but it was a nice job talking about the venous system in an easy to understand way.

• Dr Zivadinov’s presentation was perhaps the most interesting and I won’t comment much on it here as I’ll dedicate an entire post to dissecting some of the numbers and information he presented regarding the BNAC studies.  I will say Dr Zivadinov was very adamant about patients not flying all over to get treated just anywhere, that at the least it should be under IRB watch and done in coordination with a Neurologist.  Keep in mind that Dr Zivadinov is a researcher, and he understands what needs to happen for the CCSVI-MS link to become accepted medical knowledge and it’s controlling this early treatment of patients to make them factual as opposed to anecdotal evidence and I applaud his advice.  Again, another post on his presentation to come later.

There were over 7000 questions posted by online viewers….wow.  I think this will be the media breakthrough the MS community has been looking for in CCSVI awareness.