6th Programming and Graduation to 3 Months Follow Ups

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

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

Interesting

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

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

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

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

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

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

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

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