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 ...

On Wednesday I spent six hours driving in the rain. I spent one hour sitting in a waiting room and I spent 20 minutes with my doctor. In that twenty minutes I went through a roller coaster of emotions as I was told this might not work again. The impedance numbers on my DBS are off, once again, indicating a possible break in the wire. This is exactly what I just had fixed. I don’t know what’s going on or what to do. The pain in my back is so intense I can’t sleep. I wake up a million times a night then I’m so exhausted during the day I can barely keep my eyes open. My hands are closed so tight they throb and swell and doing simple every day tasks are nearly impossible.  When I had my dbs, seven years ago, I had high hopes it would change my life. Shortly after that surgery, it did. My symptoms were under control for seven whole years. I don’t know what changed but recently it’s not working and it’s beyond frustrating. I’ve had the settings changed more times than I can count, som...

About 5 months ago, my life began to change again.  My dystonia symptoms came back strong and started to attack my body. It started with my left hand and slowly moved to my left foot, my right hand, right foot, back and neck.  The pain was unbearable and I knew something about my DBS wasn't working. I started out by going to Boston to see my neurologist.  He did a CT scan to make sure the leads didn't move, and tried changing my settings several times.  My symptoms didn't improve, and in fact started to get worse.  I started to get a shocking feeling in my head.  Every time my left DBS was on I had this feeling on the left side of my head.  I had severe headaches and over the last year had been experiencing eye pain and dizziness. My neurologist didn't know what else to do, so he sent me to the director of the movement clinic at Brigham and Women's hospital.  He tried changing my settings as well and decided I should have an MRI of my head....

Often times we take for granted the amazing things in life.  The feeling of being in love, the confidence when you get your license, graduating from high school or college and the magical feeling of Christmas morning.  More times than not, we rush through life just to take up time while always "waiting" for the next big thing. It's been a long time since I have just enjoyed a typical day.  I was always stressed out and couldn't wait until bed time just to get to the next day to do the same thing all over again.  It was a habit, it was a routine, it was life...but it wasn't fun.  I was recently introduced to happiness again.  I have learned to enjoy the sunrise every morning, take my time and enjoy every day with my children.  I love watching the snow fall and how beautiful the trees look the morning after a storm. The last few months have been excruciating but filled with happiness at the same time.  I decided a while ago that I was ...

I don't know what is going on with my DBS, my body is twisting in every direction and the pain is unbearable.  I trip several times a day because of the weird position my feet are in and my hips and knees are starting to ache because of the way I'm walking.  I have a twitch in my neck that makes it look like I am nodding my head or dancing to music and going out in public has become embarrassing and terrifying.  I have seen my neurologist several times, who has done adjustments to my DBS and has taken x-rays and CT scans to make sure the leads have not moved.  Tomorrow they will have a meeting with the surgeon to discuss what is happening and what the next steps might be.  I have watched Cody fight through obstacles every day, smile through all the pain he's suffered, and stand strong and brave through so many tests, operations, therapies etc.  I am trying so hard to be like him, to fight through these hard times with a positive attitude and really hope t...

I've never met anyone with the kind of bravery and strength that my son has. Cody has gone through more in 4 short years than most people go through in their entire life. On Monday, Cody went into the OR, yet again, to have a pretty complex surgery.  We had to be there at 9:30 and he was not brought back until 2:30.  They made an incision in his neck to carefully move the carotid artery out of the way in order to do the flap.  They were very successful and able to do everything as planned with no complications or injury to the artery.  We didn't get to see Cody in the recovery room until about 6:30 and at that time, he was having a pretty hard time with his breathing.  He required constant monitoring and jaw lifts to open up his airway.  It was horrifying to see as a parent.  After a little while, Cody was moved to the PICU, where he was monitored and sedated over night.  On Tuesday morning, he slowly woke up and was pretty miserable....