I am a feature article on the CCSVI Alliance website.

I was honored to be asked to write a patient perspective for the CCSVI Alliance.   They just published it as the March feature on that section of their website.  They used a photo I sent them but it looks so large!  I thought the one I sent was smaller :)   To read my story, along with my friend Michela's companion piece, just click this link:

       Andrea's Patient Perspective

  Note:  the page can be slow to load so please have patience.  (Probably that huge photo!) 

Bocelli, Art, and Gabrielle Fauré

I've been so busy lately that I haven't had time to update this blog, so here's what's been going on.

 

Click Here to Hear the Nessun Dorma finale

The long awaited performance on Feb. 14th with Andrea Bocelli has come and gone.  It was a surreal experience for many reasons.  

•  We didn't get a real rehearsal with the orchestra or Bocelli as we did for the Christmas '09 concert.  This was because Mr. Bocelli was in NY the day before our concert for his Metropolitan Opera 'debut'.  I'm not even going to comment on that.  Click the link and read the NY Times review which speaks for itself.  Then he arrived late for the short rehearsal time we did have on the day of the concert... and we didn't go over all of the pieces.   In fact, midway through the rehearsal they added a piece of music about 2 hours before the show!  
• The conductor, Eugene Kohen, was a very nice man but a very strange conductor!  Some of his arm movements were nothing like I've ever seen.  He almost never cued our entrances and we needed the cues since we didn't have any rehearsal time.  To their credit, Orchestra Miami did a fantastic job and to our credit, we managed to not screw anything up too badly.  The videos show we sounded really good!
• The stage of course was elevated, but the chorus was in the back of the stage, elevated even more - I'm guessing we were about 50 feet above the ground.  Getting to my seat was a challenge because part of the stairs didn't have any handrails.  A nice guy from the Bocelli road crew helped me but it was a little scary. I was smack in the middle of the first row, but once in my seat all was fine.
• I'd forgotten what it was like to see 21,000 people looking at us on stage!  It was just awesome and yes, surreal.  The sound of their applause was overwhelming.

My FaceBook friend Laura came from New Orleans to see the show and she was thrilled that I got her backstage before it started.  She took some fantastic photos and videos, as did others.  The audience of course went wild for Bocelli - he has very loyal fans - but the highlight for me was hearing and meeting soprano Anna Maria Martinez.  She is just glorious and looked amazing in her red satin dress for Valentine's day.  The photos can be seen on my FB page and videos abound on YouTube.  Laura and I had fun and she stayed for another day which we spent at the flea market.

Pastel Classes  -  I signed up for this class at our local senior center and was pleasantly surprised that Daniel, our instructor, is a wonderful artist who knows how to teach.  I always said I could not draw a straight line and that is still true - but I'm learning how to draw curved lines that somehow morph into actual paintings!  I'm now in the second session of these 6 week classes and I'm amazing myself with what I'm able to do.  I can clearly see the progress from my early sessions and the challenge this week is a very difficult one.  We are using the portrait of Mary Cassatt's Girl with White Bonnet as the model for our drawing.  Drawing a face is much more involved than a landscape or still life and I didn't know where to begin, but another class member who is a 'real' artist gave me some hints and incredibly, I actually sketched in the face!  Now, it doesn't look like the girl in the Cassatt original, but it is a recognizable face of a child.  (The 'real' artist finished hers in the 2 hour class and it looked identical to Cassatt's!  I told her I want to buy it!)  When it's done, I'll post it here - but meanwhile, here's another study I did of a Van Gogh landscape.  (There's some glare on the bottom of the photo that's not on the original.)  Bottom line is I'm really enjoying the class, the other students and the teacher.  Who says you can't teach an old dog new tricks?

Gabriel Fauré wrote some beautiful music but I have to confess that other than the gorgeous Cantique de Jean Racine I'm just not a big fan of French romanticism.  The Master Chorale of South Florida is rehearsing Faure's Requiem and my plan is to rehearse and learn the piece but not sing in the performances because I think it will be too difficult for me to stand for entire performance which is what will be required.  Plus, I don't love the piece and further, our conductor has placed me in the lower alto part which for this piece means I'm actually singing the Tenor I part in the tenor register which is killing my voice - it's too damn low!   I'm not a second alto - if anything I'm a second soprano so this just feels wrong to me.  I can't sing it that low with any kind of decent tone and I don't think my one voice will be missed in the sea of 100+ so I'm opting out.  It will be fun to sit in the audience and hear what the chorus sounds like - something I rarely get to do.

But first, we have the Verdi Requiem coming up March 24th through the 27th.  I love, love, love the Verdi Requiem and am looking forward to being back at the beautiful performing arts center at Lynn University in Boca Raton. Saturday night is already sold out so if you are in town and want to see a great performance of a great masterwork, let me know and I'll be happy to invite the first 2 people who reply as my guests to the night of their choice - Miami, Fort Lauderdale or Boca!  

Next week I'll be in Tampa for the CCSVI Alliance Symposium and Walk.  See my previous post for more info.  Will report on that when I return. 


Addendum:  I finished the portrait - it needs some tweaking but basically this is it.

Tampa Symposium and Walk-N-Roll

Please click here to see my walk page and donate to this worthy cause


It's time to START NOW - March 4-5 will be an exciting weekend in Tampa for the first annual CCSVI Alliance Walk-N-Roll fundraiser.  I will be one of the speakers on March 4th and will be 'rolling' on March 5th.

Here's what's being planned:

Day 1 - Presentations by CCSVI treatment providers, Dr. Bulent Arslan, Moffitt Center,  Dr. Michael Dake, USF,  MS neurologist Dr. Stanley  Krolczyk, neurologist Dr. Mark Cascione, four patient perspectives, reception and silent auction. 

Day 2 - Walk-N-Roll (2 miles) on Saturday morning, from 8 am - 12 noon

             Food, friends and fun in the sun (get that vitamin D).

If you haven't already done so, please visit my walk page by clicking link on top of the page to read why I'm passionate about this cause.  As a fledgling organization we really need all the support we can get.  If you can't contribute but want to help, how about an in-kind donation for our auction?  Or if you have a business, why not be a sponsor?  Any support will be appreciated and used well - I promise you that.   Help us make this first event a huge success.  I'm counting on all of you.
Thanks!

New Beginnings

Dr. Salvatore Sclafani

A new year naturally brings new beginnings but January, 2011 was the most exciting January in my personal recollection.  What has me so excited is the time I spent this week at the 23rd Annual ISET in Miami Beach.  The International Symposium On Endovascular Therapy meets each year to share advances in ET, watch actual procedures, listen to expert presentations on technique and findings, network, and see the many vendor booths showing the latest tools for their profession. 
 This year I was very fortunate that all these things converged:
a) the ISET was being held  at the Fontainebleau Hotel in Miami Beach, less than an hour away; 
b) the organizers chose to showcase a number of presentations on CCSVI, inviting the leading doctors in the field to participate;  
c) the organizers graciously donated space for an information booth to the CCSVI Alliance; 
d) the Alliance asked me if I could help cover their information booth at the event!

Since ISET is not open to the public I would never have been able to have this experience without the Alliance and I am forever grateful to Sharon Richardson, President for inviting me.  It was great meeting Sharon and I immediately could see that the Alliance has the right woman for this daunting job.

Me and Dr. Dake - CCSVI Pioneer

Monday:  Woke up at 5am.  Left home at 6, got a bit lost driving to Miami Beach (only I could get confused on this straightforward trip), still arrived in time to meet Sharon and chat and the presentation began at 8am.  
Dr. Zamboni, Dr. Sclafani, Dr. Dake, Dr. Haskal, 
Dr. Machan, Dr. Benenati, Dr. Katzen and Sharon (!) were all on the podium and each made their presentations.  Over 700 people filled the room and some even sat on the floor in the back to hear about CCSVI.  It was amazing.  The presentations lasted through the morning at then broke for lunch.  I tried to take some photos but they didn't come out too well - although I did get to meet Dr. Dake when he stopped by our table later in day.

Sharon Richardson & Dr. Arslan

Sharon went off to do some video interviews with Dr. Zamboni and Dr. Haskal and I went to cover the Alliance information table.  Sharon's friend Nancy also came along to help.  We had a good number of people stop at the table to ask questions, get literature and to tell us how much they enjoyed Sharon's talk.  We had some lunch, went back to the table and then my doctor, Dr. Arslan stopped by to say hi and give me a big hug! 
By 3:30 it was quiet so I made my way home.  (Well actually since it was Monday I went to my choral rehearsal and didn't get home until 11 pm.  A very long day but amazingly I had ENERGY!  Thank you Dr. Zamboni and Dr. Arslan.)

Wednesday Sharon called to say things were quiet and she and Nancy could handle the table so I had the day off.  But Thursday, the final conference day, there was a technical panel on CCSVI and I was welcome to come.  I wasn't going to pass that up so I arrived (didn't get lost!) at 8:30 for the 9:00 session. 
Same doctors on the panel (minus Dr. Dake who had to leave early) and this time I had a great seat closer to the podium.  The mood after all the presentations was one of hope and forward movement - and new beginnings. I took photos and learned a lot;  loved Dr. Haskal's ideas and Dr. Zamboni was excellent.  

So, they're all leaving the stage and there I was!  First I got to speak with Dr. Katzen who told me to email him about my follow up Doppler!  Here - in Miami!  Then I got to talk to Sal Sclafani who was just the warmest, nicest guy ever.  Dr. Arslan came over and together we approached Dr. Zamboni and the group that was around him.  He noticed me and came over to my scooter!
  I was able to say, "Thank you for changing my life and the lives of so many of us with MS."  He held my hand and smiled that amazing smile and said "I hope you keep getting better."  Oh wow.  I moved on, as there were many waiting to talk to him.  Dr. Arslan stayed and on my way out I found myself next to Ziv Haskal.  I said to him, "I enjoyed your talk and agreed with everything you said, especially about ... " well, no need to recreate the conversation.  We spoke for about 10 minutes!   

Sharon left to catch her plane and I went down to the lobby preparing to leave when I realized I'd left my notes in the salon.  I went back to get them and on my way out (for the second time) there they all were!  Standing around, informally chatting, and I decided I had to get a better photo of Dr. Zamboni.  I took out my camera.  Dr. Arslan saw me and said, why don't you get in the photo and I'll take the picture.  I think Dr. Zamboni heard him because he motioned me over!  OMG!  I was a nervous wreck and you can see it in the photo.  I didn't get close to him and my expression was awe and shock!  Thank you Dr. Arslan!  That photo would not have happened without you.

What a wonderful way to begin the new year.  Renewed energy, CCSVI gaining more acceptance every day, doctors agreeing to collaborate and develop protocols so research can have standardized procedures, and a once in a lifetime experience for me.
My personal 'new beginnings' include exercise classes, an art class, and I'll be editing and publishing a book.  I learned a lot in 2010, and 2011 brings more to learn, more to share, and more hope for everyone.  I wish you all wonderful new beginnings.

Addendum:  After I posted this I got an email from The New World Symphony here in Miami.  (If you're not familiar with NWS, they are America's orchestral academy, founded and conducted by Michael Tilson Thomas (MTT).  After fellowships at NWS, these musicians go on to play in the best orchestras in the world.)  I won two tickets to the January 30th performance at their new concert hall designed by Frank Gehry!   A new beginning for them and a great end to an amazing January for me! 

A Mini-Rant as we leave 2010: Please, just do your job!

Is there anything more frustrating than dealing with people who can't (or won't) do their jobs?  We see this all the time and it's become so pervasive that many of us have come to expect poor or incompetent treatment from salespersons, service people, bureaucrats, government officials, et. al.  It's a sad state of affairs, I tell you.  But I don't expect that attitude from my treating physicians.  The last two months have been so strange in dealing with my neurologist and his staff that sadly, I feel it's time to make a change. 

My first clue:  I had a follow up appointment in November to discuss treatment options following my venoplasty.  I was excited to show Dr. S. the small improvements I had.  I told him I had applied for SSDI back in October and asked if he had sent the records they requested.  He leafed through the chart and said, no, he didn't see a request.  Strange I thought  - I'd have to call them to follow up.  At least I had sent in whatever MRI records I had which contained my diagnosis.  I later called and they said they sent two requests.  I suggested they make another request by fax since that office seems to respond to faxes... I hoped.

I'm getting a bit annoyed now. 

Clue two:  His plan was for me to go on Tysabri, but after a lot of research and thinking, I decided that was not the route I wanted to take.  Too much risk for a possible benefit.   The other drug available to me was the newest flavor on the block, Gilenya (generic: fingolomid).  This oral medication was unbelievably expensive and the list of side effects would make anyone run for cover.  Even Dr. S agreed it was too new and too scary to try.  So as a person with SPMS, there were no other 'approved' options left for me.   I wanted to try LDN - Low Dose Naltrexone - which a lot of MS patients swear by.  It is a very safe option, and if it didn't help, well, it couldn't hurt.  Dr. S. said he didn't know much about it but was willing to prescribe it after he got more information.  I came prepared with written LDN Fact Sheet, and I also said perhaps he could speak with Dr. X, another MD in the practice who was known to prescribe it.  Here's where it got weird:  he asked ME to call Dr. X's office and find out what the dosing should be.  I said, wouldn't it be better if you or your nurse called and got the information.  He said they were too busy (he said it nicer than that but that was the bottom line).   Too weird.  I didn't pursue it - but I did call, and Dr. X's nurse and I had a long discussion about how strange this was.  I was told to call Dr. S. and have him call Dr. X directly, (no shit).   So I did - left 2 messages for his nurse and it's now December 30th and I've yet to hear back from anyone.    (So I ordered the LDN on line and started taking it a month ago, titrating per the fact sheet.  No side effects so far.)

Clue Three:  Last week I get a call from the woman handling my disability claim asking me to go to two independent doctor's appointments before they make a decision.  I questioned why this was necessary since by now didn't they have all my neurologist's records?  No, she said.  They never received them after numerous requests and now I would need to get an independent exam.  Plus she wants me to see a psychologist as well.  Why I asked?  Because you're on an antidepressant.  Oh, I say, but that's only because of the MS medication I used to be on.  She said, that's our policy.   So of course I agree to the exams and then fire off a fax to my doctor asking, begging them to send the records so I don't have to endure this.  No freaking response and so, I had a 45 minute appointment yesterday with an odd doctor in an awful part of town which I can only hope will help my application.  The shrink is scheduled Jan. 10th.

So now I have to find a new doctor and hope the SSDI people actually read and listen to the reports that they do have.   I have no idea who I want to use as my neurologist now... a whole 'nother dilemma.

Next: had to call my old job about a benefit question.  Called twice last week; sent a follow up email, finally called again yesterday and left yet another message.  Geez people - just do your jobs!  Finally got a call back with an answer.  One down.   I'm just fed up and aggravated because if people would just do their jobs the world would work so much better!  OK - rant is over.  On to something positive!

I'd like to leave you with this excellent video of Doctor Salvatore Sclafani who explains CCSVI and the current state of knowledge and research in a very realistic way that anyone can understand.  I love the comparison he makes with vaccines - listen and you'll see what I mean.

       Click here for the Interview wth Dr. Sclafani

I will actually get to meet Dr. Sclafani in January when I'm at the ISET conference in Miami helping at the CCSVI Alliance exhibit booth.  I may even get to meet Dr. Zamboni!  The book I'm working on is coming along and I'm hoping we get it done in time for the March Tampa event. (I'll have to tell you about that in my next post.)  Looking forward to singing with Andrea Bocelli on Valentine's day and to the Verdi Requiem in March with Master Chorale.  Many good things to look forward to in the new year!

No resolutions this year.  Just a promise to myself to do whatever I can to get healthier and to continue promoting education and research about CCSVI.  

My wonderful friends and family, I wish you a happy, healthy, new year filled with learning, loving, music and joy!

Frustration - as defined by the Wheelchair Kamikaze

The well known MS blogger Wheelchair Kamikaze has posted one of his very best essays this week.  His blog is so popular because he not only writes beautifully, but also he expresses for many in the MS community what we are feeling but don't know how to put into words.  Marc Stecker writes frankly and honestly about his personal battle with PPMS (primary progressive MS), and his latest post is sort of an addendum to his previous one which dealt with the emotions felt by a person with MS.  When a reader pointed out he'd left out the feeling of frustration, he promptly responded with this incredibly insightful, honest and thoughtful essay.  Please go and read it here:

                            THE FRUSTRATION MACHINE

If you continue and read the comments, my initial response can be found there, but I felt I needed to say more.  Marc got it exactly right, especially the last paragraph which reveals so much about this man whom I truly admire.  His resiliency, courage, optimism and tenacity in the face of overwhelming odds is always amazing to me.  I try to model my response to this frustrating  disease after his.  I don't always succeed but it sure is a worthy goal to aim for.  Thank you Marc for everything you do. You are brave. You are intelligent.  You make a difference.

Busy, Busy, Busy - Who Said Retirement Would Be Relaxing?

This will be a departure from my usual posts.  I  just thought I'd update everyone on what I've been doing with all my "free" time since, hooray!, retirement.

Well first I had to straighten out all the mistakes that were made when I left work - that was stressful and took a week to fix but it's done.  Then I had to deal with Social Security.  'Nuff said.  No point going over it here - done, finished, all good.

Next: My son has been been on my case for years about exercise.  More specifically, that I don't.   I always was able to come back with, "After working a 10 hour day starting at 5:30 AM I have no energy left to even stand up let alone go to the gym."   Well folks, that won't cut it anymore so I went and joined the local (dare I say it), Senior Center.  Shhh don't tell anyone.   Just so happens they have some great classes there and they are either free or very inexpensive.  So I signed up for Chair Exercise and Chair Yoga and Beginning Tai Chi.   So far I've only gone to the chair exercise class and man, it was freakin' hard!  Who knew?  But I can see that I will clearly benefit from this so that will be one I will continue.  Tai Chi was this morning but I never got there - was too busy as you'll see later.  Chair Yoga starts next week.  And Dec. 14th I start a pastels drawing class.  I must be out of my mind.

Then I started on a new MS medication called LDN (Low Dose Naltraxone).  This is not an "approved" MS drug but my neurologist said it was fine if I wanted to try it since, no surprise, he didn't have any other options for me.  SPMS is not very treatable, even with fancy drugs.  LDN required me to do a lot of research which I did very thoroughly and that took time.  So many people were so kind to help with great info but I had to look in hundreds of places, so I decided to start a Face Book group for 'newbies' to the LDN world.  I invited all my MS friends and some LDN experts I'd met during the research and last night the site went live!  So this all took a lot of my time.  Here's the link:  

LDN-Newbies-Discussion-Group

Also on Face Book is a group led by my friend Sandra who lives in Rhode Island.  She had the wonderful idea to make a calendar showing the faces and stories of people who were 'Liberated' (i.e. treated with angioplasy for CCSVI) and sell it to raise money for CCSVI research.  So many people responded and wanted to be in the calendar (over 200 from all around the world) that it turned into a book!  Sandra is a graphic artist and will do a great job of designing the book and layout and choosing the photos and stories.  But she needed help with all the detail stuff (getting releases, keeping track of members and their date and place of procedure, finding a printer, distribution, working with the non-profit group who will benefit, checking the page often, etc.).  In short, she needed ME!  Anyone who knows me knows this is what I do well.  So I jumped in and offered to help and I'm loving every minute of it - but it is taking some time for sure.  Not complaining - the finished book will be awesome!  Hope you all will buy one to support the cause.  We're shooting for end of February to get it out.
 
OK - so we don't go back to Master Chorale rehearsals until January and I didn't want to go that long without singing.  I learned about something called the Virtual Choir, a very cool project on YouTube done by Eric Whitacre, a composer and choral conductor.  Rather than explain the whole thing here, just go and check out the one they made last year - you'll get it. 

Master Chorale at Wold Performing Arts Center

  Lux Aurumque - Virtual Choir - Eric Whitacre   

I submitted my entry for "Sleep" as an alto 1 and when the project is done I'll put a link to the finished video on the blog. Can't wait!  But it took me time to learn the part and record my entry. I'm still not thrilled with it but there's a deadline so in it went.

Tonight I'm going to a fundraiser in West Palm Beach and will speak about my experience with MS and CCSVI from the patient perspective.  This supports the research going on in Buffalo, NY and I'm glad to do this.  I was also asked to be part of a two day event in March which will be really exciting!  A symposium in Tampa at Moffitt Cancer Center (which is where my doctor practices) with a lot of experts and doctors in the field sharing information.  I will be again be speaking from a patient perspective.  And the next day, a fundraising walk with the proceeds going to the CCSVI Alliance.  I'm so honored to have been asked to speak and to be working with this incredible organization.  Thanks go to my good friend and fellow pioneer in Arslan's Army, Nicki W. who got me involved.

Visit their website under my links box

Tomorrow I have a phone conference scheduled with the VP of the CCSVI Alliance to discuss how the book project and this event can partner with each other to raise money for the Alliance.  This is so exciting to me.  This small  project that Sandra started could turn into something huge!  

Who said one person can't make a difference?  I've met so many amazing people along the CCSVI journey and all of them have made a difference on their own, but when we partner to work together, watch out world!

What else have I been up to?  Reading Nora Ephron's fantastic, sad, funny, book, I Remember Nothing.  How did Ms. Ephron know all about my life?  This is a must read for anyone over the age of 50.  You'll laugh, you'll cry, you'll forget where you left the book!

So I did end up talking about MS, Music and Me!  Thank you for spending time in my little corner of cyberspace.  See you next time - when I get some more time.  This retirement stuff is exhausting!