The reason I’m back down and not up this week is I’m still seeing symptoms of having too much electricity. My foot and toes are still curling up and turning in and my hand moves awkwardly.
Just as a little caveat...I’m supposed to be experimenting with the levels of stimulation I give myself. The doctors have given me permission to do this. Everyone is unique, so the doctors can’t say without a shadow of a doubt that one way, one level, one frequency will work for everyone. To make it even more “unique”, dystonia patients are in their own category when it comes to seeing what DBS can do for them. So, I have to experiment. I remember the neurosurgeon telling me that everyone has their own “sweet spot”. When I was in surgery, he tested and tested and tested somewhere around 30 different “spots”. He knows the general area of the brain to stimulate to get the best results but each patient has a different "sweet spot" that works best for them. To find that he has to test and experiment, which is why I had to be awake during the surgery. It’s like that with what I’m doing with the volts of stimulation. However, I can only go so high or so low with the stimulation because of the way it’s programmed. The doctors at Vanderbilt can monitor everything I do. I don’t think they are actively looking at what I’m doing on a daily basis – I’m just not that interesting and they don’t have the time (nor probably the desire!), but they could (if they needed to) look at everything I’ve done. I hope that clears up some confusion you may (or may not!) have in regards to my going up and going down in stimulation.
This past week I have started to deal with readjusting my expectations of everything. The doctors told me that DBS won’t “cure” me of dystonia. I read it again last night in all the pamphlets and reading material they gave me. It’s not a cure. I know that. Logically, I know that. However, I’ve let myself believe that it is a cure and therefore have completely frustrated myself! I got my expectations WAY up when I had that miraculous day where I could walk better than I ever have been able to since starting to see signs of dystonia. I felt like I should be able to walk like that EVERY day from here on out. That’s just not the case and never will be. I can have a great walking day and then the next day have an awful one. DBS isn’t necessarily going to fix that for me. So, I’m readjusting my expectations. It’s oh-so-hard, but I’ll get there. Another expectation that I am readjusting: walking with the walker. Again, I had oh-so-hoped that once I went a full day NOT using it, I would never ever have to use it again. I thought that if I did use it, I was a failure. Now, I’m trying to adjust my thinking to think that it’s a tool to use if I need it. And if I need it, it doesn’t mean that things are getting worse or that I’m a failure, it just means I’m not having the best walking day and I need it to assist me to walk.
Another thing I’m dealing with is coming to terms with the fact that I may have one thing and not the other. I’ll be elated if I end up with both things, but I’m readjusting my expectations. What do I mean by having one thing and not the other? Well, I’ll give you an example one of the Vanderbilt doctors told me. One of his Parkinson’s patients had DBS done and it ended up helping him walk well but affected his speech negatively. That may or may not be so bad, however this man is a minister, so speaking is kind of important to him. He finally found what worked for him: He turned his DBS device on to walk up to the pulpit, but turned it off to preach. So, I’m experiencing that. My speech isn’t effected (at least that I know of!), but my hand is. I spoke with someone today and said that I’d been thinking about this. I want to be able to walk well. My hand, while effected, can still do what I want it to for the most part. I can tell it’s not “normal”, but I’m not sure others can. I can live with that. So, again, I’m coming to terms with my limitations and the fact that everything will probably, more than likely, never be perfect. I have to make that OK for me.
On an entirely different note, I think I’ve found the “sweet spot” styling my hair. I have to use mousse on it right after I get out of the shower and then I have to let it air dry without touching it or messing with it. If I do this, I get super curly hair that’s cute. If I don’t do this, I get bushy hair that’s not so cute! Ha! It’s amazing to me how fast my hair can dry, so I have to style it the second I get out of the shower.
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| Bushy Hair |
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| Curly Hair |
I have my 6 months post-op doctor's appointment on September 6 at Vanderbilt. It's going to be a long day, but hopefully a good one!
This past week has been emotionally all over the place for me. Readjusting my expectations and letting go of perfectionistic tendencies is incredibly hard for me. But, I’ve also grown in leaps and bounds this past week. I wouldn’t trade anything that’s happened in my life. The good, the bad, the ugly, the frustrating – it’s all taught me so much. I’m incredibly thankful for everything I have been given. It could always, always be so much worse. I’m blessed. Pure and simple – I’m blessed. God’s Got This!!
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