How I’m doing 3 years after deep brain stimulation for Parkinson’s
Comparing the severity of my symptoms before and after surgery
Note: This column describes the author’s own experiences with deep brain stimulation for Parkinson’s disease. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.
It’s been three years since I had deep brain stimulation (DBS) for Parkinson’s disease, so I thought it was time to revisit the surgery and assess its impact on my life.
I was diagnosed with Parkinson’s in 2015. When I first heard about DBS, I thought it was a last-resort sort of treatment, so I didn’t pay it much attention. But as my symptoms worsened, I learned more about it and eventually concluded that it was the best option for me.
After the surgery, my excellent neurologist warned me that patients often forgot how bad their symptoms were before surgery, so they’d start complaining about minor issues and not focus on the positive impact of DBS.
That day, I went home and wrote a list of all the changes I’d noticed. I dug that list out today to see where I stand three years later.
Then and now
Tremor: Before surgery, I had a high-amplitude, unpredictable tremor, mainly in my arms. It would leave me breathless. Now, I still tremor, but not as often, and the bulk of it is in my feet and legs, which doesn’t bother me as much as having it in my arms. The other day, I threaded a needle, which I wouldn’t have dreamed of doing three years ago.
Medication: Before surgery, I took carbidopa/levodopa every two hours around the clock. I also used the Neupro (rotigotine transdermal system) patch to deliver medication, but it gave me a rash, was expensive, and had to be changed every 24 hours. Now, I take carbidopa/levodopa four times a day, and it’s tremendously freeing not to be concerned with such an onerous medication schedule.
Pain: Before surgery, I had neck pain for years. Right away after DBS, my neck pain was gone, and, knock on wood, it remains gone.
Stiffness: Before surgery, I was super-duper stiff in my neck and shoulders; this started even before my diagnosis. Now I have just a bit of stiffness in my neck and shoulders.
Sleep: Before surgery, I couldn’t sleep through the night, and I’d wake up several times with a tremor. Now I sleep through the night.
Walking: Before surgery, I had problems with my toes curling. Initially, right after surgery, my toes stopped curling, but about two years ago, they started to do so again. I’m currently getting Botox injections every three months. The jury is still out on whether this treatment is helping me, but I can still walk quite well.
Slowness: Before surgery, I moved with turtle-like slowness, a condition known as bradykinesia. The slowness improved initially, but now I’m definitely slowing down again.
Appetite: Before surgery, I lost my appetite as eating just became too tiring. I lost quite a bit of weight. Now I’m hungry again, and though I regained most of my weight in the first two years, it recently started dropping again.
Fatigue: Before surgery, I was exhausted. Today, I still am!
My confidence is something I didn’t put on the list but should have. Before I was diagnosed with Parkinson’s, I did a fair amount of public speaking, taught cooking classes, and loved participating in conversations. Before DBS, if I did any public speaking, my tremors would go wild, which was awkward and a bit embarrassing for me. My confidence took a nosedive.
After DBS, I started participating in discourse again, and my confidence soared. I’m in a weird space these days because it’s not my tremor that slows or stops me, it’s my voice. My speaking pace is slower and a bit thicker, which is annoying, so I participate less than I want.
So the big question is am I happy that I had deep brain stimulation surgery for Parkinson’s? Yes, I am. Before I had it, I’d lost hope. I couldn’t imagine a day without tremors. I couldn’t imagine a day not being ruled by medication. I took neck pain for granted. I had given up on getting a good night’s sleep and enjoying meals. Now, I feel so lucky to look back and know I made the right decision for myself and my family.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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Comments
Marjorie
I’m so glad you had a good outcome. My husband had DBS in 2007 for the left brain and 2009 for the right brain. He takes carbidopa/levodopa once a day. For many years he did not need any medication. Before surgery C/L did not help him at all with the tremor and maybe just a bit with stiffness. His neurologist put him on the highest dosage he had ever used on anyone and the side effects were extreme with no affect on his PD. It was most despairing.
Before surgery he tremored all day long on his right hand and his foot. The muscle pain was very hard on him. Later the symptoms developed on his left side which led him to get the second surgery. He is most grateful for the DBS. He has had PD for 22 years since diagnosis but likely had it many years before that. He continues to walk with no assistance but no longer drives. One thing DBS did not give him was ability to have a small motor skills return enough for his hobbies of wood carving and camera repair.
He does keep up with regular exercise through rocksteady boxing as well as working out and using a stationary bike at a gym.
Reese Carroll
Thanks for sharing your experience with Parkinson’s and the benefits of DBS. Mine is very similar and honestly, the DBS saved my sanity and my life. I encourage others to take a close look at DBS as a way ro get most or much of your function back. Who knows how long it will last but, it sure beats the other alternative.
David Salahi
Thanks for sharing all the detailed info. This will be very helpful for people considering having the DBS treatment.