Ms. Millie's Blog

6th Programming and Graduation to 3 Months Follow Ups

2009-06-29T10:44:00.002-04:00

I just got back from my 6th programming visit to NY. I can't believe it's almost a year since my surgery. The doctor was very impressed with the progress. Yes, he expressed concern for the swallowing issue, but right now we can't do much more than what we are doing--liquids, liquids, liquids--Yummy! And some of the pain, just may be part of my life for the rest of my life. And I am working on making peace with that.

He now changed my frequency for more fine-tuning and I "graduated" to three months for my next follow up. I will keep you posted.

All my love and gratitude,
Millie

Hope

2009-06-11T21:11:00.001-04:00

http://www.dystonia-foundation.org/pages/brian_runs/523.php

Interesting

2009-06-11T09:58:00.002-04:00

Hey All,
Below is an interesting story of a family living with Dystonia:

http://www.cnn.com/2009/HEALTH/conditions/06/10/dystonia.tylers.hope/index.html?eref=rss_topstories

Yesterday, I truly got to see how Dystonia can affect every single muscle you could have imagined or not. I went to the Voice Center for speech, voice and swallow therapy. I am now down to 100 lbs so we really want to get to the bottom of what is going on. We saw my tongue retracts and spasms in a way that is causing the gagging. And I will be having more tests next week to see if my esophagus is also contracted.

When they put the scope down my nose, I got to see how even my vocal cords are contracted, thus my problems with speech and voice. I also went for a Pulmonary Function Test to see the extent of the contracture in my diaphragm. I will know the results next week.

When I read the article I posted recently, I thought I could relate to how it affects everything, but yesterday was a real eye opener. The good thing is that we can find out what is going on so that we can address it.

Thank you everyone for your love, support, prayers and help!

I love you,
Millie

Update

2009-06-09T17:25:00.002-04:00

Hola!
I hope all is well out there. Even if I don't call or write, I haven't forgotten. I have been trying to stay afloat.

Many of you have emailed me and asked how I am. This setting has been very challenging because it is taking me on a constant roller coaster ride physically and emotionally. Some days I am doing sooooo sooooo much better and then the next moment something starts to move, shake, twist or just flat out hurt so much. Going to the gym is helping me rebuild my strength, but I have to admit a former gym-fan, now it is a challenging, sometimes dreaded chore.

I have had a challenging time emotionally, but I am so grateful to the wonderful community that supports me, helps me and loves me...and "puts up with me and this interesting adventure"---thank you all!

Below is an article that just came out that can describe part of that roller coaster--again, I am thankful to my family, friends, all of my support and my teacher--that all help me to not be on that roller coaster ride all the time, at least not emotionally, anyway. Not much we can do about the physical aspect expect observe and detach.

All my love,
Millie

Neurological disorder can take control over victims

Dothan Eagle - Dothan,AL,USA

While Parkinson's eventually destroys its victim's brain, dystonia takes the ... Medications can help, and in severe cases deep brain stimulation surgery ...
http://www.dothaneagle.com/dea/lifestyles/health/article/neurological_disorder_can_take_control_over_victims/74798/

A Good Laugh

2009-05-21T18:35:00.002-04:00

Howdy,
I hope when you read this, all is well with you. An update after my fifth programming. My experience after this last adjustment has been very different than any other. The first few days my speech was affected. Then I had a couple of days where I felt great and then... All of a sudden my body started to hurt especially on my left side in a very different way than before and I was/am very hypersensitive. We tried everything, but nothing was working.

Then as Life would have it, in its perfection, Sheri remembered a conversation with one of my doctors from an earlier programming session in which he mentioned that when a new contact was added (a new section of the brain was being stimulated), those muscles had to be re-trained because they did not know what to do. So, we have been trying this approach this week. I have been going to the gym every day and doing a light, but very diligent work-out. Finally, with the exception of my neck and shoulder that seem to want to be very attached to each other, I am getting some relief.

When I went to my Chiropractor today, who is one of the many angels I have been blessed with because he is THE BEST (Thanks Dr. Morgan!), he suggested crawling!?! I had to laugh, but as I tried it, I saw he was correct. Every muscle that hurts is being worked out and after a good crawl, I feel good! So...if you want a good laugh, just think of a 35 year old woman, now 107 pounds crawling around her house?!?! Maybe I will let someone take a picture and put it up.

Thanks everyone for your constant prayers, love and support.
I will keep you posted.

And Dr. Morgan, even though you torture me, you are the BEST and now you gave my friends an idea as to my next investment--knee pads.

All my love,
Millie

5th Programming Update

2009-05-09T11:03:00.005-04:00

Hola!
I hope this post finds you all well, enjoying Spring and getting ready for summer. The verdict on the 5th programming is still out. My body is doing very very different and weird things so we just need to give my brain and body time to adjust and then I will let you know.

Here are some pictures from my last visit to NY:

These are two of my "Miracle Workers": Dr. Tagliati and Dr. Bowman.

Here I am with Jorge Delgado--thanks for a great and inspirational day
(Thanks Tonya and Barb)

Thank You Christine and Joe for a scrumptiously delicious meal
and for sharing your home with us.

I will keep you all posted on any new developments. Thank you all for your prayers, love and support.
All my love and gratitude,
Millie

NY 5th Programming - Here we come

2009-04-23T10:34:00.003-04:00

Dear Friends,
Today I head out to NY for my 5th programming visit tomorrow at 11:30 am. Please keep me in your prayers. This past adjustment was quite interesting. I had to have my left side readjusted to the old setting because I could not tolerate the pain from the new setting. My right side has improved a lot, but as of late, we have noticed my right foot is inverting and so I have been having numerous encounters with the floor. So we hope Dr. T works his magic and rectifies that and finds the setting that will get my left side under control so that the pain level can decrease.
I will post and keep you updated upon my return.
Thanks!
Much love,
Millie

DSB/Dystonia Symposium

2009-04-23T10:24:00.002-04:00

This past weekend, I attended the DBS for Dystonia Board Symposium in Nashville, TN. It was great meeting my extended cyberspace family. They provided (and still do) a lot of prayers, love, support and information during this whole process. So it was great to put a face to all those names. And there were many presenters with a lot of information. Information and knowledge about one's condition is power because then you know what you can do. Plus it was nice to share with oter people that know what we go through day in and day out. So thanks to you all!

More pictures:
http://www.kodakgallery.com/OwnerShareLanding.jsp?collid=292012717705&UV=951747088071_402718617705

All my love,
Millie

Eric's 2009 Spring Break Visit

2009-04-23T10:16:00.002-04:00

I had the honor and the privilege of having my nephew spend a few days with me here in good 'ole Decatur. THANK YOU, Eric, it was awesome spending those days with you.
Here are some pictures:
http://www.kodakgallery.com/OwnerShareLanding.jsp?collid=663771717705&UV=951747088071_402718617705

I hope it won't be too long before you are back.
I love you,
Millie

Sher's Birthday

2009-04-23T10:10:00.002-04:00

I wanted to include the pictures from Sheri's birthday! Sher, thanks for the gift of your life to the world and for being a part of my life!
http://www.kodakgallery.com/OwnerShareLanding.jsp?collid=862751717705&UV=951747088071_402718617705
With utmost love and gratitude,
Millie

Miami VIsit

2009-04-23T10:00:00.004-04:00

Hello,
I am trying to update the blog. It has been a crazy month. Below please find the link to the photo album with the pictures from the visit:

http://www.kodakgallery.com/OwnerShareLanding.jsp?collid=544101717705&UV=951747088071_402718617705

THANK YOU SO MUCH to everyone who went out of their way to see me. It was great seeing you all. There just weren't enough days to see everyone, but SOON I'll be back again. And my apologies for some of the cancellations. These days my body rules, so how it feels is what goes.

A special thanks to Julio Bevione for the invitation to some speaking engagements. And to Mario Murgado, who helped me resolve my car issue.

I love you and miss you all,
Millie

My Birthday

2009-04-12T23:10:00.002-04:00

Hello,
Click below to see some of the pictures from my birthday. It was a bit of a physically challenging day, but I thank all the angels that shared with me and made it a great day!
Enjoy!
All my love,
Millie
http://www.kodakgallery.com/Slideshow.jsp?Upost_signin=&UV=351685638882_320395076705&collid=597976076705

Artist Puts Together Fundraiser to Help Me

2009-04-09T22:48:00.003-04:00

Dear Friends,
Malena and Katrina have put together a fundraiser to help me out right now. Please read below and if you would please help me spread the word, I would greatly appreciate it. If you would like to place an order, please email me millielight717@aol.com and I will forward it to you.
Thank you!
Love always,
Millie

Dear Friends,

My name is Malena Bisanti-Wall and my sister Katrina is part of the Dreaming group in New England. She recently told me the story of Millie Munoz when we saw each other at Christmas. In order to help support Millie, Katrina had a great idea - I could use my passion of working with clay to help raise money for her surgery fund.

For all orders placed by April 30, I would like to offer my artwork at a discounted price and 20% of all orders will go towards Millie's surgery fund. In addition, Katrina is matching the amount raised to further support Millie's cause. To see pictures of my clay art, please visit my Flickr site at www.flickr.com/photos/mbisantiwall/. To order, please complete and return the order form (my contact information is on the form).

If you have any questions, feel free to e-mail me at mbwclayartist@hotmail.com. Thank you for your help in supporting this worthy cause!

Sincerely,
Malena Bisanti-Wall
www.flickr.com/photos/mbisantiwall

Many Updates, but One at a Time!

2009-03-26T09:39:00.002-04:00

Hello Everyone,

I had not posted since my last programming. I have a lot to say, but I will do it in a couple of posts. The first one is the "results" of that last programming. The last setting was WONDERFUL for my right side. It has been incredible to see what modern technology can do. The toes on my right foot had always been curled inward and now, they are straight. I am working on getting them to wiggle some, but I am sure that will come with time. My right knee has not locked since I left the doctor's office that day. My right hand is doing great. I can pick up things with much more ease and not that much shaking. My writing can still use some improvement, but it is better. So the right side - GREAT!

The left side on the other hand, was not a happy camper with the new setting. So much so, that I had to find someone in Atlanta to just tweak it down to the old setting until I got to NY in April. I spent three weeks walking at a 60 to 90º angle, and now we are walking straighter.

So that is the DBS/Dystonia update.

I will be posting about my birthday and my visit to Miami. And with those posts, will come lots of pictures.

All my love and gratitude to everyone for your love, support, prayers and contributions.

Always,
Millie

4th Programming

2009-02-26T21:34:00.006-05:00

Hello!

I hope this post finds you all well and creating a magnificent 2009 for yourself. On the 13th of this month, Sheri accompanied me back to NY for my 4th programming session. It is still too soon to report in on the full results of this programming, as it usually takes a good 2 to 3 weeks for everything to settle, but we are already starting to see some positive results in my walking, gait and posture. I must say the last programming was very very good! The first two weeks were very challenging, but then there was a big shift. I have been walking more and better. I have been using a walker to help me, but everyday I need it less and less; and the pain has diminished considerably. THANK YOU ALL for being a part of that!

Here is a picture of me at the doctor's office two weeks ago:

(Oh yes, I now have glasses, which are helping me very much!
Go figure...one more thing Dystonia affects...)

Sheri also took me to the Metropolitan Museum of Art. I must confess that other than the last time when she took me to the National Museum of History, this had been my first time in a museum and I felt like a little kid at Disney World. I admit I was not feeling well at all, but I did not want to leave. It was awesome. Thanks Sher and Barb! Here is a picture of me with Barb at The Met:

I also was blessed to be at one of my Angel's wedding--Mr. Ken and his bride Rosa. I said I wanted to have fun and by golly we did. I even danced a bit with Ms. Sheri and Ms. Tonya, and I had the honor of a dance with the handsome groom.

I also wanted to thank all of you who have been donating and contributing to my funds. For those of you that may not know, I was let go from my job. They were very good to me and very supportive throughout the whole process, but I just could not do what needed to be done right now. So...we have applied for disability, but still have not heard, so we got a lawyer to help us out. I also went for unemployment, but we still don't know if I will be eligible, so believe me every help you have all provided and are providing is very much appreciated because right now, there is nothing coming in. I trust that just as each step of this whole process has been a miracle, this, too, will all work out, BUT DO know that I acknowledge that you are all part of that miracle each day!

Humbly, With Utmost Love and Gratitude,
Millie

3rd Programming

2009-01-18T14:27:00.005-05:00

Hello All!

I'd first like to wish you all a VERY Happy New Year! May 2009 be magical!

I am sorry for the lack of updates. The last setting was very challenging. I actually had to end up turning myself off the week before I went up to NY because it was just too much. I went up for my 3rd programming on January 9th. Sheri went with me and I thank her. During this programming, they actually changed the level of the brain that they were stimulating--they went from Level 0 (which is the deepest level of the brain) to Level 1 (one level above). While I was at the office, I had some movements going on on my left side, so they also decreased the amount of voltage back to 2.5 Hertz on my right side (which affects the left side of my body). I had a very rough time when I got home and experienced a lot of pain, BUT now I have experienced 3 of the best days in a very long time. I am still very tired and fatigued so I spend most of the day sleeping or in bed, but this is normal right after an adjustment to the programming.

While in NY, Sheri took Pete and I (Thanks Pete for taking us to Programming) to the National Museum of History and the Planitarium. I had so much fun! THANKS SHER! Here are some pictures:

This butterfly got very attached to Sher while we were in the Butterfly Room!

Then at night we hung out at Ken's place (Thanks Ken and Rosa for your hospitality). It was Ken, Rosa, Christine, Pete, Thin-Thin, Scott, Pilar, Sheri and myself. We missed all the other angels, but hope to see them in February.

I love you all and I thank you for your continued support, help, prayers and encouragement!

This journey has always been "we" or "our", never "me" or "mine" and I consider myself very richly blessed by such LOVE!

Much, much love and many blessings,
Millie

Dystonic Storm

2008-12-14T12:27:00.001-05:00

Well, I have been away for a while. Last week was very challenging. I had was is called a "Dystonic Storm" basically what happened is that every muscle in my body was contracted. I had gone for a massage therapy session and by the time I got to Sher's house, I had my right hand straight up in the air with my wrist inverted outward. My left shoulder was glued to my neck. My left wrist was inverted inward. I was folded pretty much in half. And my right leg was completely inverted inward. I was in so much pain. Thankfully, I had my Angel, Sheri, around, and she took wonderful care of me. I am much better. I am still feeling very tired overall from the experience, but am grateful for being straight again.

The interesting thing is that the day after when everything released I had about 24 hours of no pain and pretty much no knots!!!! That was the first time in my life, that I could remember that I experienced no pain! We have all invisioned my getting well, but I got to truly LIVE that and there are no words to express what it felt like. Now I have a clear vision of what we are all praying for.

Thank you all for all of your love and your support! You have all helped keep my heart FULL no matter what has been going on.

And, Sher, once again, thank you. I would have never survived that experience without you!

All my love and gratitude,
Millie

Happy Thanksgiving!

2008-11-26T20:19:00.005-05:00

Well, it is the eve before Thanksgiving and I am sure many of you are getting those Turkeys ready. As I get ready, I just sit in awe and gratitude. To be honest, I had had a couple of challenging days, and even this morning, I was still trying to shift from a place of victimization to one of gratitude! Thanks to the wise words of My Sher, I was able to see and remember.

As I was getting ready to post, I came across this picture:

This was me almost 3 months ago! And this was me 3 weeks ago:

What can I say! We are seeing some improvement and we are just taking it one day at a time!

But I have yet to find something to convey my greatest gift of all--all the love and support that I have had--there are no words, there are no pictures, there is nothing--except to realize every single day, how truly, richly blessed I am!

Thank you ALL!

May you all have a wonderFULL Thanksgiving!

Much love and many, many blessings,
Millie

After 2nd Programming

2008-11-16T22:01:00.003-05:00

Mom and Millie in NY for second programming with
The Chicken Dance Elmo and Pinky, courtesy of Tonya--Thank you!
(Notice I am standing, no Millie Mobile (wheelchair) and no Thelma & Louise (the fore arm crutches) only Excalibur (my cane))!

Hey! I am sorry for not posting. I have gotten a lot of emails and phone calls inquiring, but I haven't been too good at returning those right now. The second programming has made my body do a lot of different things. Lots of twisting, pulling, contractions, and pain. But all we can do is wait and see. I hope tomorrow or some day soon after that, I can post that this second programming has had some good results.

I would like to share that after my evaluation after the first programming comparing to my pre-op evaluation, there has already been a 30% improvement--WOOOOHOOOO! And our goal is that that percentage triples!

Thank you all for all of your love and support! To my friends and family, I have made it this far, thanks to your unconditional love, help, encouragement and support! Never forget that because I sure don't--if you are reading this, you have made a difference in someone's life--Mine--and I thank you!
I love you!
Millie

Millie Who?

2008-10-30T13:37:00.002-04:00

Howdie! My apologies for not updating in a while. In the last post, I mentioned my first programming and the immediate effects. Now it has been almost 5 weeks and here is what is going on: My speech is pretty much back to normal, but the spasms have come back and thus, I have been in a lot of pain. I must say I am a bit more mobile these days! I can walk around a little and am not so dependent on the wheelchair. So, now I go back for my second programming this coming Monday, November 3rd and we'll see what happens. PATIENCE, PATIENCE PATIENCE!
Thank you all so much for all of your love and support! I will update upon my return!
Happy Fall!
All my love and blessings,
Millie

Back from 1st Programming Adventure

2008-09-30T17:01:00.002-04:00

Well, we finally got back from NYC last night. Thanks Mike for going with me on the trip--for all of your love, presence, service and awesome massages! Thanks also to Barb for going with us to the first programming. Thank you all for a fun Saturday night dinner and evening--Joe, Christine, Scott, Tonya, Mike, Barb, Juanathan, Pete, and Thin-Thin. Thanks also to Tonya for a great Sunday adventure--we went to where the ball drops in Time Square, The "M&M" Store (3 stories high!!!!), to see my first Broadway show and to eat at "The View"--that was so much fun and I ate enough to last me a couple of weeks (ok, ok, Margaret, a couple of days?).
The first programming went okay. Now we just have to sit and wait, and be VERY PATIENT! The honeymoon period is over so a lot of symptoms are returning, so some days are challenging.
Also, with the turning on of the machine, my speech has been affected so if you call and I don't answer or call back right away, I really do appreciate the calls and I will at least email you as soon as possible.
I will post some new pics as they come my way---but I am not sure I will be able to beat Mike's animated captions!?!?!?!?!
All my love and gratitude,
Millie

1st Programming! Officially Turned On!!

2008-09-26T19:40:00.018-04:00

Well, Millie got her two devices (neural stimulators) turned on today!! She said she was a little nervous before we got to the hospital, but everything went fine during the programming.

The first Doctor (Bowman) said they first needed to check the devices. She had this blue thing that looked like an older type of palm pilot that said Medtronic on it. This Medtronic device had a wire connected to it and a smaller gray box at the other end of the wire. The gray box was placed over each side of Millie's chest on top of the devices that are in her body. She entered some settings on the blue box that were a starting point for dystonia patients. There are 4 settings for each box/device that's in Millies chest. Dr Bowman started on the device in Millies left side. She would change one setting at a time and after each change she'd ask Millie how she felt. She would ask if there is any numbness or tingling. Millie's answer was almost always no in regards to tingling/numbness, with the exception of one time with her right arm. Millie said her right arm felt a little weird, maybe tingly. Dr Bowman made a setting change and then Millie said it was fine. (note: the device in Millies left side controls the right side of her body) Dr Bowman said there were no problems at all and proceeded to do the device on the right side. The device on the right side went the same as on the left. There was one point when Millie said there was a little something and the Dr made a change that made the little something go away.

Millie needs to be careful with devices that have magnetics, such as some of those things that are in the doorways of stores to prevent theft. Another example is the magnetics on the door of a fridge! The reason is because these can sometimes turn her devices off. Millie received a remote control to turn the devices on if necessary though. It can also check the battery life of the remote control itself, the battery life of the devices in her chest, and verify if the devices are on or off. The batteries in her chest devices should last 3-5 years, which will then need to be replaced, which means another surgery adventure.

After all the programming was done Dr Tagliati came in and said a few things. He said the key is to be patient. He mentioned the first few programmings are best educated guesses and they start at low settings. He said sometimes patients see results after the 1st programming, but if you see nothing don't worry. He would like to wait at least 1 month to decide if the current settings are good or they need to be increased/decreased. He said it may take 1-3 years to see the FULL effect of stimulation. He said the good news is we can use ALL the necessary settings because there is nothing that is bothering Millie as far as the device settings go. He also said, look, from now on, it can only get better!!

Millie will return for her 2nd programming on Monday Nov 3rd.

Well, below are some pics from today, enjoy!

Love to all!
Mike

Here's Millie after breakfast ready for the hospital:

Here's Millie and Toeclog in the hospital room where the programming took place:

Here's Dr Bowman pretty excited at getting to level 16 on Tetris! After she finished that game she starting programming Millie's device:

Here's Millie surprised to have reached level 40!:

Here's the blue Medtronic device that was used to program the devices in Millies chest:

It's Millie and Barb!:

Here's a great shot of Millie:

And now that Millie has seen the programming done she's reading the directions to get the specifics on how to do it for Toeclog:

Here she is telling Toeclog everything will be OK:

Here's both of them posing before Toeclogs turn:

Here's Millie adjusting Toeclogs settings!:

Here's both of them happy after everything is done!:

Home Sweet Home!

2008-09-16T21:52:00.003-04:00

Greetings from Atlanta!

Today it has been 2 weeks since my first surgery! I can’t believe it. I must admit that I was told by many, I read about it, the doctors told me, everything, but nothing can really prepare you for being awake while they are drilling holes in your head!?!?!? I haven’t quite found the word to describe that experience, but I am grateful it is over and done with.

First, I must say THANK YOU! Thank you to Life for the multitude of blessings I constantly receive. Thank you Barb for opening your home to me for me to stay during my surgeries and my recovery. Thank you Sheri for flying up with me and being with me during the first surgery and the few days after! Thank you Tonya for helping me during the weekends. Thanks Margaret for flying up and being with me during my second surgery and those OUCHIE nights! Thanks mom for your love and being with me during this challenging time. Thank you Susan for flying up with me for that first doctor’s appointment. Thanks to everyone for your visits—Mr.Ken, Pete, Scott, Juanathan, Christine, Tonya! Thanks for all the calls, the emails, the cards, the notes, the prayers! I know that operating room was filled with a multitude of Angels watching over me. ¡Gracias mi Abuelita por cuidar sobre mi! Thanks to everyone who has altered his/her schedule to help take care of me---I wouldn’t have been able to make it without you—Bill, Suzanne, Alix, Deb, Margaret, Sheri, Susan, Margie, Renie. Thank you for all of your donations. I will never be able to thank everyone or fully express my gratitude to everyone for everything! Above all, thank you all for your love! Many of you comment on my strength and my courage, but the the one thing that has gotten me through all of this is the unconditional love that I have received from everyone around me and the absolute faith in ALL THAT IS! I know how TRULY RICH I am because my Life is filled with so much love. Every morning, I put myself at service to Life—Thank You!

Today Sheri removed the bandages from the incisions from my chest and on Friday she will remove the staples from my head—there goes my idea of being Frankenstein for Halloween?!?! Humor makes everything that much easier! Next week I head to NY to be “turned on” and for my first programming session. Thank you Miguelito for taking me—I truly appreciate it!

I will post soon!

Thank you again and I adore you all!
Millie

Back in the A T L

2008-09-13T15:35:00.003-04:00

Millie is back in Atlanta. We flew home Friday. It was a long day. Millie is progressing well. She is doing a lot of sleeping. We took the bandages off today and Millie says she now has her Halloween costume figured out! Seriously, the staples will be gone this week and Millie is on the mend. Thanks for your comments. Millie enjoys reading them. Please continue your healing thoughts and prayers for a speedy recovery.
Above is a picture of Millie leaving New York in her fashionable do-rag, courtesy of Jen and Mark.

Love,
Maggie

Millie's new gear

2008-09-10T17:59:00.003-04:00

Hi everyone,

Here's a new picture of Millie's new gear! She looks a little tired but - this has been quite an adventure. As always we thank you for your love and concern. Please do leave a comment so Millie can read it. Also, thank you again for all the donations - it means so much.
Love, Sheri

Surgery number 2!

2008-09-10T09:36:00.005-04:00

Dear loved ones,

Sheri here with an update on Millie's second surgery. Yesterday the leads on the top of her head were connected to the wires that will run down each side of her head, behind her ears into her chest - where they will connect to her programmable boxes. She had general anesthesia for this part of the procedure unlike the first surgery which she was totally awake for. Imagine being awake while someone is drilling two holes in the top of your head! The vibrations were so strong they had to put a wad of gauze between Millie's teeth to stop them from chattering.

Anyway, this second surgery, although it is just soft tissue, will still be painful and Millie had a bit of a fitful night. I imagine tonight will be better. She was originally given codeine but she did not get along with that drug at all and got terrible nauseous. We are going to try Vicodine today - a synthetic formuation, and see if she tolerates that better. If not - it's back to Darvons and extra strength Tylenol.

I was with Millie from Saturday before the surgery to Thursday at Barb's, then Tonya came for the weekend and now Margaret will be there until Friday when they leave for Atlanta. Then Millie will be in her own home and bed until she must fly back to NYC for her very first programming appointment on the 26th. That is when they "turn her on" and we start to see the results of the surgery. Interestingly - they say there is a honeymoon period after the surgery where the post-op swelling in the brain causes the symptomatogy to abate. Indeed this had been truth for Millie. Her face and arm gesticulations have pretty much stopped and she is even walking a little better. We are all praying that this is a sign of the wonderful things to come when her boxes are turned on.

Here are a couple of pictures from Barbara which were taken before yesterdays procedure. You get to see Millie's head staples!

Here you can see that Toeclog is keeping close watch on Millie before she goes in for her second procedure!
Will all my love, Sheri

pictures from the anesthesiologist

2008-09-03T13:55:00.000-04:00

Hello,

Here are pics from our great day together, looking forward to next week.

Best regards,

Irene Osborn, MD

And yet--more photos--before

2008-09-03T00:36:00.000-04:00

Not really in order. Please forgive.

Pictures!!!

2008-09-02T19:49:00.000-04:00

These are pictures taken by Barb today. The first is Millie and Mom. In the next photo, Sheri is kissing Millie's naked head. The last two are "after" pictures. She's looking pretty good! Two holes in her head covered with Saran Wrap. The wonders of modern technology...

Out of Surgery

2008-09-02T16:07:00.000-04:00

Millie is doing fine. The surgery went well. Textbook, they said. I spoke with her a brief moment. She said, "One down, one to go!" She was also hungry and they'll bring her something around 4pm.

Thanks for all the great healing energy and prayers. Thanks, Grandma!

Love,

Maggie

In Surgery

2008-09-02T10:30:00.000-04:00

Millie is in surgery right now. She got her head shaved and the halo put on, then she went for an MRI and then off to surgery. Sheri says she was calm and ready. If there are any more updates, I will post them here. The surgery is expected to go until 1:00pm. Love to all and thanks for the prayers.

Love,

Maggie

Last Friday Night We Held a Healing Ceremony

2008-09-01T14:32:00.000-04:00

I (Maggie), Suzanne and Alix spent last Friday evening with Millie in Atlanta before she left for her surgery in New York. While we were all around Millie and praying and sending her love and healing energy, something miraculous happened. Millie's grandma has always been very close with Millie. It's like they had a special connection. Last year grandma passed. When we were doing the ceremony, Millie and I asked Grandma to help Millie get through this. All at once, Grandma spoke in her native tongue, Spanish, through Millie. Alix, who also speaks Spanish, was there and spoke with Grandma. Here is what Alix recalls:

Grandma asked, "Can someone here hear me?

Alix writes: When I first heard that I believed it was Millie who was trying to deliver a message to all of us present at that moment, but after she asked a few more times I answered yes without being sure what was really going on."

Soon after I answered, Grandma said, "Please tell Millie:

• To light a candle and put a glass of water in preparation to your surgery. This is to remind you to have faith that everything will turn out fine for you.

• It is not your time, Mija. You need to be okay because you have a mission waiting for you.

• You will be speaking in front of many people, you will help many people to transform their lives and everything will happen because you transformed yourself.

• This whole process will last about 5 months and at the end of that term you will not recognize your body.

• Please thank all that matters and all who are here with you. Thank them for filling your heart with love and for teaching you to love.

• Thank also her teacher.
• Thank her Mama.

• Tell her she cannot be afraid because that interferes with the process.

• Tell her I will be there in that room along with her surgeons and I will be taking care of her.

• Tell her she can't be afraid and that I will come back when I am ready because I am not ready yet. I am finishing my training and I will come back."

Alix writes:

I wrote the closest of what I heard that night. As I was writing, the memory of the glass of water came to my head and I try to let other thoughts go for a moment to capture the essence of that moment, that was not only deeply emotional but magical.

Please add to the posting all my gratitude and my eternal love to Milagros Munoz.

Less than 24 hours

2008-09-01T11:25:00.000-04:00

Hey Sher, What you thinkin'? Are you tellin' Steph how much we love her? Steph, we are thinking of you and we love you very much!

Hey, Jen-Jen and Mark, look what is on my keppie?!?!?!

We have been enjoying a beautiful day out! A gorgeous day, surrounded by friends and filled with love, what more could I possibly ask for?!

I love you all dearly!

Thank you all for all of the love and support that I have received! I am soooooo richly blessed and I am truly grateful!

With absolute and utmost love and gratitude,
Millie

Latest Photos

2008-08-31T10:19:00.000-04:00

Here are photos taken in New York at my friend Barb's house. The lemur with me is Toclog. He is our Toltec mascot and has travelled all over the world. He is keeping me company.

Love to all,

Millie (via Maggie)

Off to NYC!!!

2008-08-30T10:44:00.000-04:00

This is Maggie. Millie asked me to help her keep this post up to date. I am writing to let you know that Millie is off to the Big Apple. She's excited and a little scared. Alix, Suzanne and I gave her a little going away party last night. We had a great time and then we did a little healing and love ceremony with her. I will not say what happened, but wait for Alix to post her comment here and tell you.

Suffice to say our Millie is in good hands. Sheri is making the trip with her as well. Thanks to all who have helped her in many ways. She is so very grateful to you all.

I will be setting my intent for a successful procedure(s) and for Millie's health and well-being.

Love to all,

Maggie

NY--Here we come

2008-08-30T07:19:00.000-04:00

In about 5 hours I will be on a plane to NY! Wow, I can't believe it! Thank you everyone for all of your calls and emails yesterday. My phone was hopping! Thanks for all the cards. Jen-Jen, thank you for all the amazing cards you sent my way. For sure, they brought a smile to my face and many times, much laughter! And thanks all for the yummy pizza and movie last night!
I love you all,
Millie

Excitement and Fear

2008-08-23T11:55:00.000-04:00

Well, this time next week, I will be on a plane to NY! It has been an interesting week. I was starting to feel a lot of fear for the surgery last weekend. But then this week was very challenging physically and that helped me shift my focus and remember WHY I want this surgery so much! So now the "excitement" has calmed the fear--I am ready! Thank you all for your love and support!
All my love,
Millie

Step by Step

2008-08-17T10:42:00.000-04:00

If you would like to see some pictures of the step by step process to the DBS surgery, please take a look: http://www.parasphotography.com/beka.html

In two weeks, I hope to have some of my own to share with you all...

Love and Blessings,
Millie

2 Weeks and Counting

2008-08-17T09:21:00.000-04:00

Well, it is hard to believe, but we are just two weeks away. My trip to NY was wonderful--a bit hard on my body, but exciting. I met with Dr.Alterman and Dr.Tagliati. I really like them. They did a battery of tests, video taped me, analyzed me, had many discussions with me and in the end, everything was set. I will be going in for the first part of the surgery on Tuesday, September 2nd. This is when they will place the leads into my brain. I go in for prep at 6 am and they are estimating I will be out by 12 or 1 pm. I go home the next day. I will be staying with a friend in NY. Then I return on Tuesday, September 9th for the second surgery to have the battery packs implanted in my chest. I will be heading back home to Atlanta on September 12 and then returning to NY on September 25th to have the unit turned on and for the first programming session.
There are moments in the day that I cannot wait for it to be Tuesday and then at other times, I am mortified.
Thank you all for your love, help and support; and for sharing with me on this journey!
Love and Blessings,
Millie

New York

2008-08-10T09:38:00.001-04:00

Good Morning! I hope this note finds you all well! I write from New York, where I am enjoying my friends and awaiting my appointment with my neurologist and neurosurgeon tomorrow. I will update with details then.
Love you all!
Millie

Thank you everyone!

2008-08-04T17:40:00.000-04:00

Thanks to all who worked on creating this blog for me and thank you all for your comments. I will keep you posted on my journey and thank you for being an integral part of my faith and my love!
Always,
Millie

Welcome Everyone!

2008-08-04T14:23:00.000-04:00

Hello Friends,

Welcome to Millie's blog. Feel free to post and let Millie know you are thinking of her. You can read Millie's posts about her adventure here or make a donation.

Thank you & blessings,
Sheri Rosenthal
www.sherirosenthal.com