Lydia Johnson

First post: Oct 3, 2018 Latest post: Jan 10, 2019
Hello friends. I was diagnosed with Young Onset Parkinson's Disease (PD) 9 years ago.  While it has changed life in many ways, I have been able to enjoy my children, friends and interests, but it is a progressive disease and so the symptoms have increased over time.  I've managed the PD with exercise and medication.  Last year, though, I started having a "wearing off" effect.  That meant that the medications were becoming less effective.  In November, I changed medications but after several months of trial and error and complications, I've decided to have Deep Brain Stimulation, which is a neurosurgical procedure that places a neurostimulator in my brain to provide electrical impulses that can be more effective at mitigating the symptoms of PD than available medications alone.   DBS is often recommended for PD patients who are relatively young (like me!) and respond to medication.

My surgery is scheduled for two successive Fridays: October 5th and 12th (there are two procedures) at Georgetown University Hospital. Recovery can take anywhere from 3-5 weeks. This is the time we're looking for extra support. 

All to say it has been a tough year, but there will be improvement.   I've been encouraged to use this site to keep people updated and organize ways family and friends can be helpful through the surgery and recovery period if they are able.  As many of you know, my everyday functionality is variable and limited and we've been somewhat overwhelmed at times.  We will have some family staying with us, but as Mateo goes into 8th grade and Francesca and Marisol go into 6th grade, we can use help with rides, school, and related activities. 

This year has been a challenge and our family is so grateful for such a wonderful community of friends and neighbors. Know that I read each and every email and text that you send. Please keep them coming and know that while I can't always get back quickly (if at all!), it truly means the world to me. Thank you so much!

If you'd like to learn more about DBS, check out this great link from Georgetown: