Movers & Shakers!

Last week I made the case for why my blog was really just about me.  I said that I would leave it to others to inform and educate.  Well, I’m going to eat those words today. 

On Friday I had a wonderful lunch with Carol and Scott Schumacher.  Carol is a CCSVI friend who was in town to be retreated by Dr. Haskal.  She might have just been another lucky patient of his, but after she and two friends were treated by the good doctor in July, they went home to San Francisco and made some noise!  They formed a group called the MSketeers, got themselves interviewed on the local news, and began planning ways to move CCSVI research forward.  They held a fundraiser in August to support Dr. Michael Dake’s upcoming clinical trial for CCSVI at Stanford, and raised an impressive $30,000!  Dr. Dake attended the event and spoke to the crowd. 

These MSketeers are a passionate group of individuals with connections running deep and wide in organizations that have big bucks to hopefully help fund the multi-million dollar studies that will be needed to definitively answer the CCSVI questions.

I am flattered to have been asked to be an honorary member of their group, and to help them on the ground here on the East Coast.

I am going to sound very naive right now, but this is the first time in my relatively sheltered life that I see a medical condition that needs to recruit doctors to study it, as well as money to fund those studies.  I know that there are too many orphan diseases who have an even tougher fight than we do.  Because of the close to 100% correlation of CCSVI and MS, we have a built in patient population of close to 500,000 in the US alone.  There is power in numbers, and for better or worse, we've got 'em.  

A newly identified disease like CCSVI has a long, steep climb ahead of it.  I think that many strong, motivated patients have done a remarkable job of piquing the interest of interventional radiologists, and a few brave neurologists (my own Dr. Tornatore, among them).  CCSVI is now represented at their educational meetings all over the US, and the world. 

Now we have to help them find money to fund the studies that will ultimately support or refute this fascinating theory.  The usual suspects in funding medical research, the drug companies, have nothing to gain, and possibly much to lose, from CCSVI research.  If stents are shown to play a significant role in this treatment, their manufacturers would be an excellent match for CCSVI researchers.  

It is truly unfortunate that our most obvious source for financial and informational support, the National MS Society, is not really stepping up to the plate.  They and the MS Society of Canada have committed $2.4 million dollars to study testing for CCSVI, but not one clinical trial of the actual angioplasty treatment.  And in the real world of medical studies, $2.4 million spread across multiple studies is chump change, and they know it.

I like and greatly respect the people who work for my local National Capital Chapter of the Society.  They are a wonderful resource for our community.  They aren’t the decision makers or villains.  They are just hard working folk who are committed to supporting our needs with educational programs, stipends for things like child care, and referrals for just about anything!  Perhaps the problem is that they are able to offer so much because they have great financial support from the pharmaceutical companies who make drugs for MS.  I don’t believe for a minute that the hundreds, and even thousands of dollars that individuals raise at the annual MS Walks cover the yearly nut to run this national organization.  Hmmm…  A major conflict of interest for an organization whose stated goal is to CURE MS, but who is financially beholden to drug companies who are vested in keeping us forever hooked on their wares to the tune of over $6 billion a year!

So for now it is up to individuals, and groups like the MSketeers and CCSVI Alliance, to help our doctors find money to study our disease.  Luckily CCSVI treatment has given this one patient the energy I need to actually do what needs to be done!  And I am not alone.  The ranks of successfully treated patients are growing daily, and the doctors who are treating us are learning more and more with each angioplasty that they perform.

I sincerely believe that one day CCSVI will be an easily diagnosed and treatable condition.  Perhaps we will learn that with adequate intake of vitamin D during pregnancy, CCSVI could even be prevented from ever developing!  Now we just need doctors with money to study these questions.  JUST.  Ha! 

We're working on it!   We're working on it! 

LATE BREAKING NEWS:  Lest you worry that this blog has lost its focus, I have some great news about ME!  I just agreed to take my 13 year old to the Verizon Center in DC to see the Glee concert in June.  I have always been wary of making plans too far in the future.  It is an MS curse.  But with my CCSVI under control, and Dr. H. on my team if I need him, I made this commitment that I have every confidence I will be able to keep.  We are going with a few other moms and daughters, so I will have help if I need it.  But I think that my cane and I will do a damn good job all by ourselves!  I can't believe that I am actually able to contemplate doing something like this without "Rock Star" (a.k.a. handicapped) seating, and without using any special Nicole-moving equipment either.  

Blessings counted?  Check!  

It's not just about me.

I occasionally feel inadequate as a blogger.  I began this project on the suggestion of my brother.  I had been sending out email updates to family and friends, and found out that they were forwarding them to others.  How flattering!  But I was feeling self conscious about sending out stories about me, myself, and I.  What if someone didn't really want to hear about the latest nitty gritty on me?  Little bro suggested that I begin this blog so that anyone who was interested in my journey could follow, and they could choose to check in, or not, on their own schedule.  This was a year ago, and I may not be remembering it 100% correctly, but it makes him look good, so what the heck!

My goal for this blog was to simply track my personal experience with CCSVI and its treatment.  I could never have imagined that it would be such a wild ride.  I am very involved in many aspects of this new discovery, but I limit my blog posts to my original purpose:  sharing my personal journey.  Occasionally I feel shallow talking all Nicole, all the time.  But I am an expert on me, so I leave it to others to share and analyze the nuances of this fast moving wave of CCSVI.

I have MS blogger friends who are far more eloquent, and cover much more ground than I.  My favorite blog is written by Marc Stecker a.k.a. Wheelchair Kamikazi.  He has deservedly just won a Medical Blog Award for his amazingly well written, informative, insightful, beautiful blog.  He shares his personal story, but does so much more.  He discusses the latest developments in MS and CCSVI with a very mature, even tempered voice.  He is also a gifted artist, and posts videos and photographs for all to enjoy.

While the goals for my blog are more modest, I am committed to doing everything I can to further the cause!  I am a proud member Patient Advisory Board of the CCSVI Alliance (with the famous Marc Stecker, among others.)  I am also trying to work to improve access to treatment for people in the Washington, D.C area.

Recently I met with a neurologist who told me point blank that he is skeptical of CCSVI.  In the next breath he told me that he has seen Dr. Zamboni speak, has read everything about the vascular relationship to MS, and is planning on attending sessions about CCSVI at the big Neurology convention in Hawaii.  A skeptical doctor is just fine with me, but one who is clearly open minded and committed to learning more is even better.  What more can we ask for?

I was the first person he had met who has been treated for CCSVI.  He asked lots of questions, and I was proud to share all of my "wisdom" with him.

On Friday I met with an Interventional Radiologist from a major university hospital.  He would very much like to do a study on CCSVI, but is lacking a willing neurologist partner.  I'm working on a little match making on his behalf.  Hopefully I'll have more to report on this soon.

I am telling you all of this to relieve myself of the burden of beginning to feel like a narcissist.  I still think there is merit to documenting my personal journey, if for nobody's benefit other than my own.  Anyone who is tired of hearing about me is free to not read.  

As a proud pioneer in this uncharted field of CCSVI, I feel an obligation to work for the benefit of everyone who wants Liberation.  With hard work and a little luck, I have successfully treated my lame veins three times now.  I am reaping benefits beyond my wildest dreams.  But I cannot, and will not stop now.  I have too many friend who still wait for treatment.  I also have two beautiful daughters who will hopefully never need treatment for CCSVI, but I can't know that today.  I have to keep working for them, and everyone who wants the opportunities that I have had to feel better.

My good health has allowed me to enjoy life again.  But it has also given me the strength to work hard to expand access to treatment, and spread the gospel of CCSVI.  If I ever stop doing that, then we can have a discussion about a narcissist in the house.  Till then I think I'm doing o.k.

If it doesn't get any better than this

I have never been one to post You Tube videos of my "before" and "after" walking abilities.  I have footage of me walking and doing other things before my first two treatments.  I have never done post videos.  Why?

I think that with 20 years of damage, my recoveries have never been miraculous, but dramatic nonetheless.  I am a wobbling fool the day before my procedures.  Within 48 hours after venoplasty, my balance is always significantly improved.  But my walking isn't necessarily pretty.  I had planned to do post-procedure videos after each of the first two treatments.  I just kept waiting until the walking looked better.  Both times I waited too long.  Before I felt I looked good enough to record, I began losing my gains.

I am now 10 weeks out from my third procedure, and still feeling great.  But I am still self conscious about my walking.  It is great relative to where I was before I was treated, but I want more.  Although, I am beginning to readjust my thinking about what exactly "more" means for me.

Way back in March of 2010 when I had my first procedure, my goal was to just stop the progression of my disease.  To my great delight, I actually saw real changes in my balance, fatigue, swallowing, feet color, and stamina.  I got greedy thinking of the possibilities!  Alas, we now know that that treatment was not nearly aggressive enough to have any lasting benefits.

I was the first person treated by this doctor, so I had no regrets.  To the contrary I was even more determined to be retreated as soon as possible. CCSVI was real and I was a positive responder to the venoplasty treatment!   Feeling good was my drug, and I became addicted!  I needed another fix, and fast.

Although my second treatment with the wonderful Dr. Ziv Haskal was more aggressive, my return to good health only lasted 2 months.  I had too many things going on in my life to focus on rehab, and while I appreciated every moment of my improved health, recording my walking wasn't a priority.

So here I am with the benefit of much hindsight.  When will I do that video?  I could do it tomorrow.  I have been working hard in PT to rebuild atrophied muscles, and I am proud of how much I've improved.  But all of my experience has also taught me that what I look like really shouldn't matter!  How I feel and what I can do is far more important.  A collective, "Duh!" from the Peanut Gallery is appropriate right now.

I'm beginning to wonder if I will ever really be able to give up my cane outside the house.  When I use it these days, I carry it more than I lean on it.  When I do put it to the ground, it is with a light touch.  That is in sharp contrast to the death grip I used to have on it with every step I took before each of my three Liberation treatments.

I'm beginning to realize that carrying a cane out of the house is not a terrible thing.  I am grateful for all of the places that I go now with only the cane, where I used to need the Segway or scooter.  That's real progress!

The bottom line for me is that I am so much better than I used to be.  Until stem cell therapy is well established and I am able to repair my badly damaged myelin, I'm never going to be "perfect."  As if that would ever be possible anyway!  I don't want to care anymore how I look when I walk.  I only want to care that I don't fall down while I'm doing it.

I care that I can take my daughter shoe shopping, carry laundry baskets, go to three different grocery stores if I must, dance with my husband, and ride my stationary bike until my glutes burn like hell!

Walking is a significant, but by no means only, improvement that has had a dramatic impact on my life.  My spasticity is greatly diminished, I don't choke anymore, my toes are not purple, and I have much, much less cognitive and physical fatigue.  Any one of these wonderful benefits would have been enough, but I have all of them!  When I it put it in perspective, I am embarrassed that I ever worry about how I look when I walk.

So here at the end of this post I am back to the place that makes me the happiest:  The House of Gratitude.  For better or worse you have chosen to join me on all or some parts of my journey.  This allows you to see my warts as well as my "gold star" behavior.  I think it is important for me to document the wild swings in my thoughts and emotions as I sail this uncharted sea.  I hope that those of you who are where I am are nodding in understanding.  Maybe people reading this that are lined up for treatment are gaining some insight into what it may look and feel like on the other side.  For anyone who is reading this just cause they love me, thank you for caring.

A big Happy Valentine's Day smooch to the three loves of my life!  And I woof you too, Connor.

Pinot grigio!

For probably 7 or 8 years I have had a personal motto:  "I can drink or I can walk, but I can't do both."

I have always chosen option B: walking.  Boring, responsible me.  After breaking my ankle in 2004 trying to ice skate (DON'T ASK!), I became a firm believer in avoiding any activity that might ever put me back in that situation.  So far, so good.

Since my Liberation adventure began, I have had a dramatic reduction in the spasticity in my legs.  That has allowed me to reduce the amount of Baclofen I take each day.  To you lucky spasticity-free readers, Baclofen is a muscle relaxant that allows  people like me the ability to walk smoothly, and not be mistaken for Frankenstein.

I used to take 20mg of Baclofen four times a day.   For the past six months or so, I have been able take only 20mg in the morning, and 10mg at bedtime.  What that means is that I am pretty much drug free for my entire afternoon and evening!  This wonderful change in my body chemistry has allowed me the pleasure of a half a glass of wine with dinner, or a (weak) margarita if I want it.

I am no lush I assure you, in fact my husband tells me that I'm a cheap date!  I'm not drinking anywhere near enough to put me in any danger of returning to the plaster cast days of my past.  But being able to toast a friend's birthday with real wine, which I had the good fortune to do on Saturday, is a delicious treat!

So while today's installment of my occasionally meaningful blog is pretty lite, little things do mean a lot!  The rest of my life is humming along nicely.  I am getting ready to run some errands, then meet two wonderful friends for a belated birthday lunch.

I type these words so easily, but I don't know if I will ever take any of what I tell you for granted.  I don't know that I ever want to!  I'm running errands, then meeting friends for lunch?  Really?  Less than a year ago I might as well have said, "I'm off to climb Mt. Everest, then write a quick best seller!"  Virtually impossible.

I haven't said it lately, so it certainly bears repeating, "Thank you Drs. Zamboni and Haskal."

You have made my life exponentially better with your respective wisdom and clinical expertise.

2 month update

Starting tomorrow I begin setting a new personal record in my CCSVI journey.  Today is the 2 month anniversary of my 3rd treatment.  Every day that I continue to improve, or at the very least not regress, is a victory for me!

 My second treatment lasted a whole 2 months before my symptoms began returning with a vengeance.  It took me another 2 months to get retreated, and during that time I returned to my pre-liberation state.  No disrespect to me or anything, but I was pretty pathetic.  I won't bore you with the details, but you are welcome to read past posts to see what I'm talking about.

Not only do I not feel an inkling of regression, but I'm doing a little better, or holding steady every day.  I had a couple of off days last week, but  I blame the snow and being stuck in the house for days on end for that.  Once I could be on the move again, I bounced right back.  Whew!

So that's all.  Happy anniversary to me, and I hope for many, many more!