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yopd16 karma
First sign of Parkinson's was a tremor in my right thumb. I currently take Azilect, Requip ER, and Sinemet each day. I actually take so much Requip and Sinemet that most Parkinson's patients are surprised I can stand up and function without a lot of side effects. I've also tried Mirapex and Stalevo in the past but both made me foggy/loopy and I quickly stopped taking both.
I was awake during most of the surgery. I even felt the drill going through my skull. When placing the electrodes, the neurologist during surgery basically shines a light in your eyes and moves your hands and legs to measure rigidity and response. Once they feel they've placed everything correctly. They energize each electrode to find the range of power that they have for each. Basically, they crank up the voltage until your face or arm or leg seizes as if you are getting a small shock.
yopd16 karma
Also, the delay was really me getting my act together and getting to a doctor, convincing my doctor I had to see a specialist, and then ruling everything else out (stroke, tumor, wilson's disease and a few other things). Luckily, I was sent directly to a Movement Disorders Specialist, a subspecialty of neurology, who could recognize Parkinson's pretty easily. Most doctors don't even consider Parkinson's in a 32-34 year old.
yopd15 karma
After the next surgery, I heal for another couple of weeks and then I go to my Neurologist's office to have the system programmed/tuned my current situation. Once it's programmed, I should hopefully be able to reduce my medication (I won't know how much until they do the programming).
The battery is replaced as an outpatient procedure every 5 years or so. I also only had one side done (a precaution my neurosurgeon and neurologist like to take with younger patients for safety reasons), so I may need a second surgery in the future to install the electrodes on the right side of my brain for the left side of my body.
yopd1142 karma
Thanks. My daughter had a trach and feeding tube as well until four. She is Deaf/HoH and actually has no vestibular system. She also loves to read. She is mainstreamed in first grade.
Your description of the value of your mainstream education vs other areas is very valuable. My daughter would be bored in a special ed class as I'm sure you would have been.
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