Scott’s Story

Site created on November 15, 2018

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.  

Scott was diagnosed with Parkinson's Disease in August  2007.  We are excited that Scott has been approved for and will undergo Deep Brain Stimulation Surgery (or DBS) at Northwestern on December 13 and then again on January 10.  The surgeon expects the procedures will decrease the amount of medicine Scott has to take by 30-50% and he is expected to have less "off time"  during each day.  

Why two surgeries?  
Scott's symptoms of freezing and dyskinesia are caused by both sides of the brain.  If he were to have tremors in just one hand, only one surgery on one side of the brain would be required. The first surgery will be for one side and the second surgery the other side.

What is DBS?
In DBS surgery, thin wires called electrodes are placed into one or both sides of the brain in specific areas that control movement. Scott will remain awake during surgery so that he can answer questions and perform certain tasks to make sure that the electrodes are positioned correctly. Once the electrodes are situated, they are connected to a battery-operated device (similar to a cardiac pacemaker) that is typically placed under the skin below the collarbone. This device, called a neurostimulator, delivers continuous electrical pulses through the electrodes to decrease Parkinson's symptoms.

Post Surgery?
Scott is scheduled to be in the hospital for one night.  After both surgeries, Scott will meet with the neurologist on February 20 and they will set parameters into the neurostimulator. The DBS settings are gradually tweaked over time and medications are simultaneously adjusted. Most people are able to decrease (but not completely discontinue) Parkinson's drugs after DBS. Determining the optimal combination of drugs and DBS settings -- that which gives the most benefit and the least side effects -- can take several months and even up to a year.

Newest Update

Journal entry by Lisa Krusinski

It has been almost 6 months since the last update and many of you have reached out to ask how things are going.  Things were fabulous in the post-surgery "honeymoon phase" and then in April...the honeymoon was over!  

After an agonizing and frustrating 5 months, we received a diagnosis of sorts from the neurologist.  He started with, "We have good news but it's not easy news."  The surgery was successful and Scott is not currently taking any Parkinson's medications.  However, his brain is not ready to give up the symptoms of Parkinson's and has thrown in a few more along the way.  The doctor equated it to "phantom arm", when someone loses a limb but still feels the pain as if the arm were still there. I have uploaded the diagram the doctor shared with us to help explain.

Essentially, Scott's thought processes need to be re-programmed.  He was evaluated at Shirley Ryan Ability Lab (formerly known as Rehabilitation Institute of Chicago) and will begin extensive therapies, speech, occupational, physical and psycho next week and it will continue until these symptoms subside.  

We continue to be hopeful and trust the process.  Thanks for checking in!
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