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/