Swimming Against The Current

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 da

Look for something positive in each day, even if some days you have to look a little harder. Recently, my days have been hard and painful and its hard to stay positive but I have been trying very hard to find the good in every situation, even when it feels impossible.  Back in October, when my dystonia symptoms started to flare up, I got discouraged but I had hope that things would get better.  When the tingling in my head started and I had to shut my DBS off, I got scared and lost most of my positive attitude.  When I had surgery in March, the tingling went away and once again I had hope.  Unfortunately, that surgery didn't work and I was right back where I started, but without that feeling in my head. I tried to stay positive over the months, I called my doctor daily and I researched answers and treatments.  Slowly I began to get discouraged again.  I got tired of being in pain and tired of spending every day all day on the phone and realized I wasn't enjoying my lif

About 10 months ago, I began re-living the nightmare I had back in 2008.  My hands and feet began curling in and over these 10 months my symptoms have just continued to get worse and worse.  I have been going o Brigham and Women's Hospital to have my DBS settings changed, I received botox and tried different medications.  Nothing was working and the frustration was taking over my life.  I spent hours and hours day after day searching for doctors, and treatments and answers.  Two weeks ago I met with the neurosurgeon and my neurologist, who told me basically there was nothing else they could do.  They said they could do more botox, change my settings or make a lesion in my thalamus.  I wasn't pleased with this appointment but tried to stay positive because he told me he would call me within a day or two with a date for botox.  I never heard from him. I pushed and pushed for a second opinion.  I am done waiting around and having this pain every day.  I spoke with the DMRF, who r

The last few weeks have been some of the hardest weeks I've ever experienced.  My dystonia is getting worse and the pain is something I can't even begin to explain in words.  Imagine having a Charlie horse, now multiply that pain by 10 and apply it to your arms, legs, back and neck.  Doing every day tasks like cooking, cleaning and doing my hair have become nearly impossible.  I am getting extremely discouraged and don't really know what my next steps are.  I have called nearly every neurologist that's within driving distance but getting someone to listen and help me is extremely difficult.  Now, I am not writing this for sympathy or to complain about my pain but I am writing this is desperate need of someone to help.  If anyone knows of a great movement specialist neurologist, please let me know. I have an appointment on July 6th with my neurologist and neurosurgeon but I am petrified.  They have tried multiple things with no success, and are now saying I need my DBS

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

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, sometim

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.  In order to have an MR