Reflections 4 Years After Dad’s Deep Brain Stimulation for Parkinson’s
A columnist lets her father explain the changes in his dosage and movements
Several years ago, my dad decided he was ready for deep brain stimulation (DBS), a procedure that would implant electrodes into his brain to target common Parkinson’s symptoms like tremors and dyskinesia (involuntary, erratic, writhing movements).
I’ve written about the massive impact that the procedure has had on him. He went from struggling to drive to regaining almost all of his independence. Before the procedure, he had a hard time keeping weight on his thin frame. But ever since, he’s been looking like himself again.
Most of these benefits still stand resolute against Dad’s version of Parkinson’s disease. He and I recently had a conversation that reflected on the specifics of those changes, and here’s what he told me.
DBS changed his medication dosage
Dad saw immediate changes in the amount of levodopa he needed to help with his symptoms. “Before my DBS, I was taking more levodopa, probably one or two pills per session,” he said. “Two pills lasted about two, three hours. But since DBS, I cut that dosage almost in half. I think that’s fairly common.” What’s more, he said he hasn’t had to increase his levodopa dosage since the procedure.
He explained that the days vary, and sometimes he temporarily adjusts his medication to accommodate changes. For example, he said, “This morning, I came off. I don’t know why. It didn’t last as long as it normally lasts, so I took my second dose earlier than normal. It doesn’t happen very often. And it could have been something I had in my stomach.”
For the most part, however, his dosage has been consistent since DBS, which is amazing because he was steadily increasing it before the procedure.
His right leg became less dyskinetic
Another positive change that Dad experienced after DBS was less overall dyskinesia, and especially in his right leg: “When I used to come off of levodopa, my right leg would shake uncontrollably for 10 to 15 minutes, and that’s gone away,” he said. “DBS totally took dyskinesia out of my right leg.”
Since dyskinesia was one of the main reasons Dad decided to undergo DBS, I was happy to learn that it tackled some of his worst symptoms.
While Dad was initially worried about the potential negative side effects of undergoing DBS, he’s a believer in the procedure now. “I think the DBS works, and it continues,” he said. “It improves a little at a time. It’s been four years, and it still functions quite well.”
As for what I’ve witnessed, I think Dad is experiencing a slower progression than he was before DBS. And for that, I’ll be eternally grateful to his surgeon.
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
Ronald Thompson
I realize this is an American website but are there any locations in Canada that provide DBS
Fabio Dwyer M. Duarte
Ronald, I have my surgery done at Toronto Western Hospital, I'm not sure about other places in Canada. Toronto Western is a world reference in DBS, my neurosurgeon was Dr. Andres Lozano, one of the first doctors to perform this kind of procedure.
Andreia de Sousa Pereira
Hi Fabio, I am trying to reach you. Can you please get in contact with me or read my instagram message, please? Many Thanks, Andreia
William L Livingston
This is the first time learning about this procedure.
Thank you for telling about your father,
Bill Livingston
Peter Levine
Google it, and definitely ask your neurologist/MDS.
charles melot
Had the hole in my head a week ago.Looking forward to the battery installation in a couple of weeks.
Marjorie E Weiss
My husband, now 70, had DBS surgery in 2007 and 2009 and still benefits from it. He did not need meds for at least ten years following them. He now takes a very low dose of Corbo/Leva once a day. The surgeries gave him pain relief which was the best thing and also took away his tremors (meds never did for him--no on-time ever. He now tremors when very tired or when anxious.
PD marches on though. He gave up driving six years ago and has had a few falls that necessitated ER visits. Depression and anxiety can visit him. Memory sometimes is not the best. Balance has become more of a challenge.
We are very grateful for what DBS gave him.
sal cutrona
Very encouraging and informative . Thank you for sharing your experience.
Mike
Mary Beth,
I am very happy to hear that the DBS procedure has gone so well for your Dad. He is courageous to take that risk.
His success with that operation ‘Opens the door’ for so many. Parkinson’s does not have to be a static condition and you and your dad are pioneers for our community. Blessings, Mike
John Contu
I was diagnosed with Parkinson 6 years ago and for the most part have been able to function with the Levodopa Carbidopa. Now up to ten tablets daily. But in the past few months began struggling when walking since I feel extremely fatigued especially my lower limbs, from the knees dawn. I am 81 years old and wonder if I would qualify for the DBS procedure?
Mary Beth Skylis
Hi John,
Thanks for your comment. I don't remember everything they checked for my dad before he got the procedure. But I do know that they wanted to make sure that he wasn't experiencing dementia or depression before the procedure (I'm guessing that the surgery can make those things worse). It's definitely worth a conversation with your doc.
Pace Joe
What ars.the negative issues. Follow up issues or failure rate. I haven’t heard of any draw backs, it’s seem almost too good to be true.
Joe
DUANE CARLING
GOOD INFO ... THANKS.
Declan kennedy
Mary Beth thank you for the lovely article on your dads progress with Dbs nice to read about how hi is feeling after the treatment thank you and all the people in the Parkinson's society for these fine articles Declan have a good day and your dad
carma doroh
my husband has parkinsons and qualified for DBS about 5 years ago it was very exciting to see the tremor stop and there were a couple years with no tremor at all and his meds are at the lowest level but then he fell several times and his balance has declined his speech has declined as well that was helped with hearing aides very thankful for the DBS but have seen other issues since the tremor was reduced daily challenge exercise is key to holding steady and diet effects everything prayers only help since he has also developed MDS he is 75
Todd Morrish
Hello, Mary Beth. Excellent piece. Love your writing. I have PD, and I am on the board of a local PD nonprofit called PD Active. Would you entertain speaking to our members in a zoom webinar sometime soon? Feel free to email me directly. Thanks for your consideration!
~Todd
Mary Beth Skylis
Hi Todd, Thanks for your message. I'd love to chat with you further. Could you register as a user so we can connect?
Thank you!
Mary Beth
Fabio Dwyer M. Duarte
I'm 46 years old, living in Canada. Had DBS done one year ago, after a alarmingly fast progression of my early onset PD over the first four years since my diagnosis. It works SO well in my case that I could re-start my career as a professional guitar player and music teacher that I had to stop a couple of years before. I almost don't remember that I have PD for most of the time. I understand that I'm in the top of the list of best results in a DBS surgery probably in the world, as my case has been study case for international conferences, etc. Any questions about DBS, I'd be glad to answer :-)
Guy Babineau
Did you hear about Focussed Ultrasound treatment…
Where did you had DBS…
I am from Canada. Also
Regards
Guy
Patti L
I was diagnosed with PD 8 years ago at the age of 61. I had DBS 6 weeks ago. The two surgeries were scheduled 3 months apart because of a possible issue of dementia. After the first surgery, my tremors were completely gone and I was able to get up from the table and bathroom with no help. After the second surgery, I had terrible balance problems. It's taken about 4 weeks to get back to where I was before. I was taking seven Sinemet tablets a day to none. No off periods. I've since heard that most people have a harder time after the second surgery. I've had no pain associated with the surgery, not even Tylenol.. Surgery risks: infection less than 1% and stroke was about 1%. This surgery has been approved for about 20 years