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!

Proud, humble, and very grateful

Click on the picture to see the whole thing.                                 

For my recent birthday my daughters made me the most awesome gift.  They took your thoughtful comments and surrounded my blog with them.  They framed it and presented it to me at breakfast that morning.

Their card said, "Dear Mom,  We are so proud of how far your blog has come, so we decided to do something special for it.  We hope you enjoy your present!"

Enjoy is an understatement.  I am always so appreciative of the feedback I receive on this blog.  When they put so many comments together on one page, I was truly overwhelmed!  Wow!  Thank you, thank you, thank you for all of your wonderful support during these exhilarating and trying months.

Thank you to my beautiful girls for making a mom feel so proud and so loved.  I am very lucky to have you!

Blissfully boring

I wish I had some truly exciting stories to share with you.  My week was productive, successful, active, and very average.  Did I say average?  That in and of itself is pretty miraculous!  I love being average!  Although being an overachiever, it is possible that I might be extraordinarily average. ;o)  I can't help myself, sorry.

I did all of the things that I must do, but I did them with so much more ease.  Shopping was easy, carrying laundry baskets was easy, standing in front of the stove was easy!  Nothing was totally effortless, but it is such a pleasure to not have to think about every step I take, or every move I make.  Wait… I think I just plagiarized a Police song.  Sorry Sting!

I am noticing some subtle improvements in my balance and temperature sensitivity this week.  I wrote about both things in my last post.  I believed that neither would ever be great, but what a difference a week makes!  I am able to balance on one foot, longer on the right than the left- for now.  I have also not been nearly as cold as I had been.  This week has been warmer than usual, but the past two days have been downright frigid, and I’m doing just fine.  Go figure.

I have been spending more time carrying my cane as an accessory this week.  I'm discovering that a lot of my confidence has been sucked up by that simple little stick.  I am having to prove to myself, little by little, that I really can walk outside without it.  It will be a while before I leave it behind for long walks, but I did go cane-free from my car to the grocery store this week.  A shopping cart is just a big walker in disguise, so I cheated while I shopped.  But you try to juggle food for a family of four without a cart!  I was using that cart for it's intended purpose, not because I couldn't have walked the aisles without it.  Been there, done that!

Now may I tell you about some other exciting CCSVI news?  The CCSVI Alliance, on whose Patient Advisory Board I proudly serve, is having its first big fundraiser March 5th.  It is The Opening Minds for CCSVI Walk–n-Roll in Tampa, FL.  The event will also include an informational Symposium the evening of March 4^th showcasing doctors, patient perspectives, and a fabulous silent auction.  If you can’t make it to Tampa, you can still support this excellent organization any time, day or night! Go to www.ccsvi.org , then click on the "Donate" button in the top right corner of the page.

Doctors are supporting The Alliance by providing video content, as well as reviewing all medical information provided on the site.  The Alliance is also proud to have been chosen by the National MS Society as a provider of information about CCSVI.  They have added a link on their website to The Alliance’s site.  It is a good first step for an organization that, as of now, has been lukewarm at best in its support of this awesome new development in possibly redefining MS and its treatment.

That's all for now.  If in the next week I discover that I can leap tall buildings in a single bound, you'll be the first to know!  

6 week update

I am officially 6 weeks post-treatment.  I am still making remarkable improvements in my legs and core strength in PT, thanks to my wonderfully unforgiving therapist.  She works me hard, and I love it!

My balance is still a little unpredictable.  My therapist and I discussed that strengthening my muscles will do great things to improve my balance.  However, any permanent damage that has been done to my vestibular system over these years may prevent total recovery of balance.  I’m going to do everything I can do to work on the muscle stuff, and just hope that great strength can compensate for deficits in other departments.  We’ll see!  For now I am fine without a cane in the house.  I take one with me when I go out, but try not to touch it to the ground as much as possible.  It is a fun little game I play with myself, although uneven surfaces are still too risky to attempt to navigate without my third leg! 

For anyone new to my story, I should warn you of my gift for devising explanations for phenomena where there really are none.  I do not like uncertainty.  In its presence I will concoct what I believe are reasonable explanations to fill in the blanks.  It helps me manage my world, and has worked for me for decades.  Until I find or develop a better system, I’m sticking with it! 

My physical stamina is still good, and improving daily.  On Monday I was able to go straight from a vigorous PT session to the grocery store for a full shop.  I was pooped when I was done, and luckily my wonderful husband was home to unload when I arrived.  To put this in perspective, pre-treatment I would have had to go straight home to the sofa to recover from a mild PT session, and stay there for at least an hour.  Being able to do two strenuous activities in one day, and to do them consecutively is incredible!

I am still cold most of the time, although my feet are not purple and are actually warm as I sit here typing.  I overanalyze every symptom, and was concerned about my cold intolerance.  Then yesterday I had lunch with two friends who also spend the whole winter shivering.  They don’t have MS, they just have "delicate constitutions."  So that's what I have, too!  Not every problem has to be defined by my illness.  My New England born husband would probably call us wimps, but I think “delicate” is a much nicer description.  And since this is MY blog, what I say goes!  

As I noted above it has been 6 weeks since my procedure.  I am still feeling great.  However, a little voice in the back of my head can’t help thinking about the fact that I began restenosing 8 weeks post-procedure last time.  Will restenosis happen again?  I am very realistic, and the answer is: probably.  But hopefully not for many, many more months, maybe years!

The longer I can delay another treatment, the more the doctors will learn while I enjoy my good health.  Already the focus is broadening in many doctor’s opinions to include valves as an important focus in this puzzle that is CCSVI.  Who knows what else will be discovered while I am busy feeling so well?

Ladies and gentlemen we really are making history here.  It is a rare gift to be able to benefit from, and contribute to, a paradigm-shifting discovery in medical science.  I still pinch myself everyday.  (But now that I have regained so much sensation, I have to be more careful where I pinch!) ;o)

Follow up details

I had my one month follow up appointment with Dr. Haskal yesterday.  Unlike a visit with my neurologist, my IR did not put me through a battery of tests to check my balance, strenght, vision, etc.  We basically sat and shot the breeze.  I have been emailing him with little update tidbits since December 2nd, but yesterday we got to have a real face to face conversation!  They are all too rare in this electronic communication world in which we live.

I told him about how I feel that my symptoms are so inconsistent from day to day.  However, since describing this in my last post, I've had nothing but good days!  My balance is strong and my walking is solid.  I fell asleep in the car on the way home from Baltimore yesterday (don't worry, I wasn't driving!), but that is a passenger's duty, is it not?  I'm chalking that nap up to the gentle hum of the car engine, rather than cognitive fatigue!

Many of you have asked for details about the balloons used in this procedure.  I got a copy of my report, and have all of the details to share.  He used a 14mm balloon in the right IJV using high pressure dilation.  In the left vein "12 and 14mm very high pressure angoigraphy was required to dialate the vein."  He used an 8mm balloon in the azygos.

I checked my report from July.  The differences appears to be the use of "very high pressure" and the 14mm balloon used in the left vein this time.  He only went up to a 12mm in the left in July.  In both veins the problems were at the valves again.  We discussed the fact that a couple of doctors he knows are using much bigger balloons these days.  He is interested in seeing their published results before committing to using them himself.  Sounds reasonable to me, but if I am back in his office again in two months, I may ask him to give those big suckers a try.  We'll cross that bridge IF we come to it!

Sadly he had no news to share about his study.  He assured me that the process is still moving forward, but the pace is maddeningly slow.  The good news is that his interest in CCSVI has not diminshed in the least.  In fact he seemed to be even more passionate than he was the last time I saw him.  We are extremely fortunate to have him on our team.  Now if only he could get back to work, everything would be perfect!

Consistently inconsistent

You would think that by now I would be prepared for the ups and downs that follow Liberation.  Nope.  I am still exuberant on my good days, and anxious on the bad ones.

Today is a perfect 10.  My walking feels effortless; what a gift.  I worked my hamstrings off in PT this morning!  My therapist thinks it is so fun to work with me.  How flattering!  She told another therapist in the office about me yesterday.  It turns out that the other PT used to be a caregiver for a woman with MS.  She was fascinated to hear about CCSVI and it's impact on the whole concept of MS.  I told her about the book  CCSVI as the Cause of Multiple Sclerosis: The Science Behind The Controversial Theory that was written by Marie Rhodes, the second patient who was liberated in the US.  She asked if it was her personal story, and I told her that Marie is a RN.  Her book is a bona fide medical primer on CCSVI, with a forward written by Dr. Mark Haacke.  It will be available in April.  I may have to order a second copy to donate to the clinic!

Two days ago I felt terrible.  My balance was pretty awful. and fatigue was bad.  I was so down wondering if this latest procedure wasn't as successful as the previous one.  It should be MORE successful, not less.  I base that assumption on the bigger balloons that were used, and that Dr. Haskal hopefully did more damage to that nasty left valve.  You know what happens when one assumes...

Yesterday was better than the day before.  I did a big grocery shop, felt pooped afterwards, then went on to make dinner for nine people that night!  I even had energy to do the dishes before bed.

Today was awesome as I noted above.  I need to remember how days like today feel.  As long as I get one of these every three days, I'm happy!  Feeling like a perfect 10 on a daily basis would certainly be better, but I'll take what I can get.

I have my one month follow up appointment with Dr. H on Wednesday.  It is mostly an opportunity for him to see me, check my progress, etc.  I relish the opportunity to have face-time with my new favorite MD.  Maybe he will have good news to share about his study.  Once that study gets approved he will be in high demand.  My days of making an appointment with him only one week in advance will be history!  I will welcome the inconvenience to my lucky little self because it will mean he is busy treating so many others!

So far my wish for a reprieve from the roller coaster ride I've been on does not seem to be coming true.  I naively thought that I'd be wiser the third time around, and not be so emotional.  Yeah, good luck with that Nicole!  I'm going to keep reminding myself that being on this ride is still better than waiting to get on board.  So I'll shut up, keep holding on, and count my blessings daily.