It was a week day evening and we decided to order Chinese food. It was a great idea in my head until we got it delivered and it came in those flimsy white to go boxes. When Cody was finished with his three bites, I grabbed the box to put it in the fridge and dropped the entire thing all over the kitchen floor.
It was a rainy Saturday afternoon and we decided to take a ride to look at some cars. I was walking back through the parking lot and tripped and fell into a massive puddle. The kids stood there asking me if I was ok, and I couldn't get up because I couldn't use my hands to push myself off the ground.
One day, we were driving and I went to pick up my coffee to take a sip and I dropped it and spilled it all over the car.
Most of you probably just think i'm clumsy and don't understand why these things would bother me so much. The truth is, it's annoying, frustrating, embarrasing, and painful. These are just a few examples of things that happen on a daily basis. Dystonia just sucks. My left wrist is straight now and I can kind of open my fingers but the pain is excrutiating and I can't straighten them enough to use that hand. I am pretty sure my ring finger is broken and very painful. My feet and my back give me trouble all the time, causing me to fall alot. I have been desperately searching for an answer. I have seen several neurologists and neurosurgeons and no one has been returning my calls or e-mails and no one has had any answers. I was very close to just giving up after I called my neurologist and was told he couldn't see me until September!
Finally last week, I spoke to my original surgeon, who is in Albany, NY. I have tried to find someone more local, but it just isnt working out. She is the only one that has helped me all these years, and I think after this nightmare, I know that I need to just stick with her. She is willing to help me once again! We have found out that my DBS is broken and not working properly, which is why my symptoms aren't improving. My surgeon has suggested re-doing the entire DBS and upgrading to a new model with only one battery pack. She believes this will bring me the kind of relief I had all those years! So, heres to some good news and lots of prayers. I will likely be having this done at the beginning of the year, and hopefully will be in much better shape very soon!
It was a rainy Saturday afternoon and we decided to take a ride to look at some cars. I was walking back through the parking lot and tripped and fell into a massive puddle. The kids stood there asking me if I was ok, and I couldn't get up because I couldn't use my hands to push myself off the ground.
One day, we were driving and I went to pick up my coffee to take a sip and I dropped it and spilled it all over the car.
Most of you probably just think i'm clumsy and don't understand why these things would bother me so much. The truth is, it's annoying, frustrating, embarrasing, and painful. These are just a few examples of things that happen on a daily basis. Dystonia just sucks. My left wrist is straight now and I can kind of open my fingers but the pain is excrutiating and I can't straighten them enough to use that hand. I am pretty sure my ring finger is broken and very painful. My feet and my back give me trouble all the time, causing me to fall alot. I have been desperately searching for an answer. I have seen several neurologists and neurosurgeons and no one has been returning my calls or e-mails and no one has had any answers. I was very close to just giving up after I called my neurologist and was told he couldn't see me until September!
Finally last week, I spoke to my original surgeon, who is in Albany, NY. I have tried to find someone more local, but it just isnt working out. She is the only one that has helped me all these years, and I think after this nightmare, I know that I need to just stick with her. She is willing to help me once again! We have found out that my DBS is broken and not working properly, which is why my symptoms aren't improving. My surgeon has suggested re-doing the entire DBS and upgrading to a new model with only one battery pack. She believes this will bring me the kind of relief I had all those years! So, heres to some good news and lots of prayers. I will likely be having this done at the beginning of the year, and hopefully will be in much better shape very soon!
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