On January 22, 2025, I marked the one-year anniversary of my Deep Brain Stimulation (DBS) surgery.
Am I back to “normal”?
No, I’ll never be normal. I’ve got a neurological disease that is continually progressing behind the scenes and there is no cure for Parkinson’s. However, I have my quality of life back. I’m so grateful that I can walk again, drive, travel and go about my daily activities with relative ease.
When my stimulator (the device implanted in my chest that produces the electrical current that travels to my brain) was first activated February 27, 2024, my settings were 2.8 on the Left side and 1.6 on the Right side (this is the amount of electrical current focused on either the Right or Left sides of my brain that controls my symptoms).
One year later, my stimulator is now set at 4.5 Left side, 2.6 Right side. As my Parkinson’s progresses and symptoms start to reappear, my stimulator settings need to be adjusted to increase the electricity going to my brain. For me, the most troubling symptoms are the dystonia (stiffness in my body) and the Bradykinesia (slowness of movement).
Since Christmas, I’ve noticed another Parkinson’s symptom creeping in. My voice is getting softer and I’m having troubles singing and sometimes speaking. My throat feels like it’s closing in and I can’t project my voice or talk sometimes for more than a couple of sentences at a time. To better manage this symptom, I signed up for an online Parkinson’s choir program called Singing Loud. I’m learning breathing techniques, vocal warm ups and resonance exercises. The program is helping but it requires practice and patience.
Since my DBS surgery, my balance has also been greatly affected. This has impacted my walking and ability to manage stairs confidently. I find my Urban Poles really help when walking outside and I use the handrail when on stairs. My neurologist has told me my balance will probably not improve despite all the exercises I do to improve it. My intuition tells me that I have to continue to keep my core, back and glutes strong and continue to practice balance exercises to maintain the balance that I do have. I certainly don’t want things to get any worse.
As I said earlier, since the surgery I’m so much better than I was. No, it’s not perfection but I’m grateful for where I am.
I’m so grateful for the advancements in medicine and science that have provided me with this opportunity to live and enjoy my life for a while longer.
I’m so grateful for my community of family, friends and clients who have supported me over the past several years. Your light and support have given me hope to keep pushing forward.
Here’s to another year of continued movement, life and joy!