Swimming Against The Current

Yesterday was one of the scariest days I’ve ever had. I drove myself to Boston to have an adjustment on my DBS because my symptoms haven’t been improving. The doctor saw me right away and decided to try a totally different setting. He changed the frequency from 10 to 130 and the voltage to 3.0 and 3.5. When he turned the voltage any higher I started to have drooping in my face and couldn’t talk. I thought I was ok so I went home and was told to follow up in 2-3 weeks unless I noticed side effects. By the time I got home my whole right side was weak, I was very slow in doing everything, was dragging my right leg and slurring my speech. My right side was twitching and spasming so bad I couldn’t sleep and ended up shutting the DBS off in the middle of the night.  I called my neurologist and will be going back to Boston tomorrow to try this again. I’m getting extremely frustrated and losing my patience but trying my best to stay positive.  Thank you for all the prayers. 

When I was growing up and I was at the doctor more times than I could count, I realized how lucky I was to have the parents I have.  My mother took days off weekly to drive me to Boston, sit in the waiting room with me, hold my hand during tests and comfort me when I cried in pain and frustration. My parents fought time and time again for an answer, for diagnoses and for insurance companies to cover surgeries for me. It was a headache for everyone involved but they never once gave up on me. As I got older, I moved to Florida and back and had two children and they still helped me through everything. There has never been a time when they weren’t there to pull me out of a bad situation, help me financially, medically or emotionally. I will never be able to tihank them enough for what they’ve done. I’ve watched my parents for years take care of each other. Yes, I can be independent and do things for myself but the thought of having someone love me and be by my side through good time