Morning are Great! (Kinda)....and getting better

Two weeks and one day......If you'll remember from a previous post that 'Mornings are Great! (kinda)' in regards to Courtney's walking and balance.  Well, that still holds true, but the mornings seem to be getting even better.  These improvements may be short-lived, as we are very aware that restenosis of the veins after the Liberation procedure is common, but its pretty exciting to see some positive change for the first time in years.

Although officially diagnosed with Relapsing Remitting MS, Courtney has never had a period of remission.  Its been a gradual worsening of symptoms for 5 years.  From that frame of reference its easy to understand how significant little changes for the better can be.  I'll let the videos do the rest of the talking today (all videos were taken in the morning).....and will keep updating regularly. 

Cheers,

John

All vids here are 2 weeks and 1 day post procedure

Walking

Hands Dexterity

Leg Lifts

These vids were 1 week post procedure

Walking 

Hands

Leg Lifts

For comparison, here are pre-procedure vids

Walking

Hands

Leg Lifts

Courtney's Liberation Procedure in New York

Well, it's 6pm the night before we fly home, reflecting on our trip to Brooklyn to have Courtney tested and treated for CCSVI.  It's been over a year on the waiting list and a lot of questions and scares in the journey to this point.  Questions and scares that will be there always baring a miraculous and not expected recovery from five + years of confirmed Multiple Sclerosis, and no telling how many more undiagnosed.  Healing, recovering from that kind of damage to the nervous system doesn't happen over night, and in many cases doesn't happen at all.  We have no expectations, only hopes, of some sort of recovery, relief.

What we do have is fight, desire, love and a willingness to do whatever is in our power to stop Courtney from progressing.

72 hours post-procedure there are little signs and hints of improvement, nothing major, and as far as we know could be temporary, coincidence, placebo....could be the beginning of greater relief, more long-term healing and an answer to some of the questions regarding how to manage certain symptoms present in Courtney's MS experience.  There is constant fear that the flow in her veins could become obstructed again at any time, requiring more and perhaps more invasive treatment (stents).  For the time being we're riding the train where it takes us and will make the decisions presented us as they come.

So far, there are a couple of things worth noting regarding Courtney's symptoms.  Her feet are considerably warmer at night, and she has spurts of intense feeling energy (has happened a few times the last couple of days). In addition she has experienced a little less spasticity, and seemingly has more dexterity in her right hand (able to cross her fingers, and point straight with her index finger), although both the spasticity and dexterity issues persist at times.

We had a wonderful trip.  Thank you to everyone who helped make it possible.

The day after we arrived was cold and rainy, so we ended up camping out in the room.  The next dayhowever; after Courtney's ultrasound testing, we took a taxi into Manhattan , visited the Strand Bookstore, then walked (and rolled) 36 blocks up Broadway through Union Square Park, Times Square, grabbing some great pizza from a little hole in the wall joint on 46th St, capping the night with a really funny Broadway show, Book of Mormon.

The following day was procedure day.  Arrived around 10:30, Courtney was done in recovery at 5:30 and we just got her back to the hotel to rest and recover.  The day after we hit the Clinic for a follow up and then I pushed her back to the hotel through Prospect Park and the streets of Park Slope Brooklyn, along the way catching the filming of The Amazing Spiderman.  Sunday we grabbed a cab to Obscura Antiques and Oddities in Manhattan, grabbed some great street-vendor food and met up with Mark "Wheelchair Kamikaze" Stecker and his wonderful wife Karen at the Metropolitan Museum of Art, wheeling through incredible photography, sculpture, and some of the most amazing guitars ever made. Visits from some of Courtney's long lost friends of over 15 years put a great bow on a really great trip to New York.

I hope to be more active in the following weeks, please keep checking in.

Best Wishes,

John & Courtney

Courtney's Liberation Procedure in New York

Day After the Liberation Procedure

Yesterday we arrived at the clinic a little before 11am, had a wonderful consultation and examination with Dr Sclafani who took the time to explain everything to us, and did a very thorough examination before taking Courtney back for her procedure (the rumors are true, he's a great man!). 

Courtney's procedure took a little longer than expected, about 3 hours. She had both of her jugulars and azygos ballooned, and other than a complication with the catheter in her left IJV everything from my understanding was fairly smooth going. She did say the actual ballooning was painful for her, but the good folks at AAC took good care of her to make sure was as comfortable as possible. 

After about an hour in recovery we took a cab back to the hotel, got her a little food since she hadn't eaten since the night before. It was a fairly long night as the spot where the catheter went in was seeping a little requiring a change of the bandage every 3-4 hours. She was sore, physically tired and mentally exhausted. 

Today we went back by the clinic to get her leg checked out which was all good. She's sleeping now, and has been in good spirits all day.....I decided to push her through the streets of Brooklyn going from the Clinic, through Prospect Park and up through all the little shops in Park Slope..we even got to watch Martin Sheen do a scene as they were shooting part of the new spiderman movie a block from the clinic. 

Couple of interesting points to note, last night, she was able to sleep with her feet out from underneath the covers because they were hot (she used to sleep with her feet out, but hasn't in years). She didn't take any of her spasticity meds last night, and her legs didn't spasm at all. There have been a few times where she has had an itch on her foot or knee since last night that made her leg jump a little, but other than that the spasticity seems to be better post-treatment (time will tell if this is just temporary relief or not). She also mentioned being able to feel the carpet with the sole of her right foot, which she has had very little feeling in. She was having fun pointing at me last night with her right hand.....fun because she hasn't been able to straighten out her index finger at will for a while. 

Thats about all I have to report at the moment.  Will update again in a day or two.


Until then, here are a couple of pictures of her left ijv taken during her procedure, the banding in the balloon clearly shows where she had a problem on that side.

No....Sleep....Till Brooklyn

Well, we've finally made it to Brooklyn.  Courtney will have her ultrasound testing tomorrow and procedure on Friday.  Again I want to say thank you from the bottom of our hearts to everyone who pitched in to make this trip possible for us.  Your thoughts, prayers, good vibes are all felt, they are already working...

We had a great cold and wet adventure today, wheeling down the rainy and windy streets of Brooklyn on our way to the nearest wheelchair accessible subway entrance.  Made it about 15 blocks before the cold and wet was just too much for Courtney to handle....we're still noobs at this wheelchair business and learned a valuable lesson today....wheelchairs + rain + cold = suck

So we hailed a cab, came back to the hotel, orders some great  food and have had a wonderfully relaxing afternoon.

Expect frequent posts over the next week.

Cheers

-J

Mornings are Great! (kinda)......Before - Part 1

Here are the first in a series of "Before" videos as we document Courtney's CCSVI journey.... instead of posting before/after all at once after everything is said and done we want to document as we go.

Mornings are typically the best in terms of mobility, here are a few videos of Courtney taken just a little while ago:

Walking

Leg Lifts

Hands

Here are a couple of clips documenting spasticity in Courtney's right leg:

Finally

September of 2009, I came across a thread on the TIMS forums regarding CCSVI. For the first time since Courtney's diagnosis back in 2006 there was a theory that made sense. Talk about gung-ho..... there was nothing at that time that could stop me from getting my wife tested and treated. I must have emailed/called every Interventional and Neuro Radiologist in Texas trying to find just one doctor who would take this somewhat new CCSVI theory seriously...brick walls everywhere.

We turned to Courtney's General Practitioner, who helped us make the first step when she gave us a prescription for an MRV. All we needed was some pictures, proof of a possible abnormality and THEN maybe we could get an IR to see her. Well, with the help of a friend we met through the TIMS forums who happened to live in our city it worked. Long story short, with Courtney's MRV prescription in hand, we finally found an IR who was willing to review the images and consult with us. The initial MRV showed very heavy narrowing in both of Courtney's jugulars, and the IR did an impromptu ultrasound on her neck, which confirmed they were about 90% below normal in terms of diameter. Instructing Courtney to hold her breath and bare down (valsalva) we watched her jugulars expand to the normal range...then when breathing normal again they narrowed. Because of this little valsalva test, the IR said there could be no obstruction in her veins and would not move forward with a venogram.

Devastation. That's what it felt like that day. 5 months of work to get to that point, with so much evidence that something was wrong and then bam.... a professional, well-respected IR tells us there is no problem with Courtney’s veins. About that time we heard of another doctor who was getting heavily vested in the research and MS community. After reaching out to this doctor and his assistant, getting on their waiting list, and staying patient through IRB denials, alternative clinic locations and the general medical politics that come with a new controversial theory like CCSVI .....we are finally booked to see a wonderful Doctor who is not only taking CCSVI testing and treatment seriously, but is in many ways a pioneer in the area. We could have looked for other Doctors and possibly been able to find treatment before now; however, Courtney has been fairly stable the last year and we wanted to wait for who we thought would be the BEST doctor to see….I feel like we have succeeded in this painfully slow quest.
As excited as I am that we’re finally looking at a real date (only 6 weeks away!), I’m definitely tempering expectations.

Over the next few weeks we’ll be taking many videos to document Courtney’s current level of disability and will be taking many videos after to show what her experience is. Good, bad or indifferent outcome, it feels like we’re doing something. We’re leaning back on one foot, winding up and taking the biggest swing we know how at this beast called MS….I hope we break its fucking nose.

New York, here we come.

Insurance Approved

It seems the last big hurdle has been overcome as our Insurance has been approved by the clinic, all that is left to do is schedule the date.....more to come.
-John

Moving right along...

After over a year of patiently waiting things are quickly progressing in our efforts to get Courtney tested and potentially treated for CCSVI, aka the Liberation Procedure. I assume at this point if you're reading this blog you know what the Liberation Procedure is; however, for good measure here is a little reference for ya: CCSVI Alliance - you can find just about anything you would want to know through this site, and if you are looking for another great place to donate I highly recommend the CCSVI Alliance.

This is a mixed bag of emotion from my (caregiver, husband, best friend) perspective. I'm excited and hopeful yet extremely cautious because I've seen the emotional stress and depression when hope is shot down. When you have a non-curable disease that is pretty much guaranteed to progress at some unknown rate its emotionally saving to have a glimmer of hope somewhere to hold onto. CCSVI has been that hope for a while now, the ace in the hole that we hope will help us win a hand in this crazy poker game of Multiple Sclerosis.

We hope for even the slightest symptom relief, just being able to cook dinner without getting exhausted would be a big win; however, the big prize is always in the back of my mind. What I wouldn’t give to see Courtney walk again with more ease…

Just waiting on Insurance approval and we’ll be setting the date for the testing/procedure, booking flights and hotel and will officially be set. Thanks so much to all of you who have pitched in with a few dollars here and there to make this trip possible for us. We’re still gladly accepting donations, good thoughts, prayers, positive vibes and anything else you want to send our way.
Much love to you all.
-John

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