Friday, May 6, 2011

Failed my walking test

I was at my neurologists for a third year check up on my brain implant. As I said in the blog about the second year check up, they do the whole test 4 times. First I come in off meds, but with the stimulator on. I have to do a bunch of tests in the office, like putting pegs in pegholes, pushing buttons, catching myself when they pull me backwards, and then the walking up and down the hallways like it shows in the videos. Then they turn off the stimulator, and I do the whole test again; then I take my meds and they do the whole test again; and finally they turn the stimulator back on and do the whole test again.

But on Tuesday when I went in, I started the first round of testing, and had such a severe dystonic attack that I couldn't do any of it. So the movement disorder clinic team and the surgical team have to meet to discuss what to do with me. They might want to start over, with the surgery, putting the wires in a different spot. I sure hope it helps this time.

Tuesday, May 3, 2011

My story, part 4

I ended part 3 with the beginning of my "Walking and Leaping and Praising God" stage. Sorry to anyone who is trying to follow along - I stuck some videos in between parts 3 and 4 of my story, and that part of the story has not yet been told. I intended to put the videos in as a gadget, not a blog entry, but I couldn't figure out how to do that.  

But - on with the story. When I started on the mix of levodopa and Mirapex, it felt like a miracle. I could walk without the cane, and I had less pain than I had experienced in years. I overdid my favourite exercise (aerobic shopping) and got a new injury - plantar fasciitis - and my old knee injury was bothering me, but I had more energy than I had had in a long time. 

I was asked to speak at a women's event in my church, and I called my speech "Walking and Leaping and Praising God". I got my husband (the only man to attend most women's gatherings- he is a sound technician) to play a bit from that song, and I danced just a little. I told the ladies that I didn't know whether I was healed, or if this was just a Divine Reprieve from the pain, but whatever it was, I would take it. 

For anyone reading this who doesn't believe in miracles, it could be argued that this dramatic pain relief and mobility was due to the medical intervention, not divine. That's fine. I believe that every good gift comes from the Father, even when it comes through human hands. 

In highly technical medical jargon, I was experiencing a phase called the "honeymoon period." This is when the drugs are working well enough to provide 24/7 relief. For some people, especially those with young adult onset PD, this phase can last 3 to 5 years. For me it lasted about 5 months. The next phase also comes with highly technical medical jargon. It is called "On and Off." I don't know who comes up with these terms, but at least my spell check recognizes them!

Sunday, May 1, 2011

Videos of my 2 year check up after DBS implant surgery

Here's an example of my lack of computer technical finesse: it took me all evening, with Derek's help, to post these pictures. We finally got them in the right order, but I couldn't get any text to go with the pictures, so I decided just to write the script in a new entry.

In April, 2008 I underwent an 11 hour surgery, awake so that I could answer questions, move my fingers and toes, and let them know which body part was being assaulted with an electrical charge.

I can't believe it has been 3 years since I emerged from the hospital with my hair shaved off at the front, sporting 18 shiny metal staples on my scalp. Sorry, no one took any pictures of me.

Next week I go in for my 3 year check up, so hopefully I will get a new set of videos. In the following pictures, I was doing office calisthenics and hallway runway walking, repeating the whole thing 4 times. In the first video, I am unmedicated, but my Deep Brain Stimulator is on. In the second, my stimulator is off as well. As you can see, I was unable to walk even with help. In the third video, I have taken my meds, and in the fourth my stimulator was turned back on.

On & Off