I’m in the queue for getting Deep Brain Stimulation (DBS), and from my perspective, it’s a long one.
I had my first meeting with some of the DBS staff at Mount Sinai in Manhattan on April 6.The purpose was for them to see if I’d make a good candidate for DBS, and apparently, I did.(Click here to learn who is a good candidate for DBS, and here to learn who isn’t. Note: these two links are from the University of Florida’s website, which may be using slightly different criteria for evaluating potential candidates.)
At that point I was ready to be wheeled into the operating room so the doctors could start drilling holes in my head, but it wasn’t time for that.Instead I returned home and had a series of one-on-one Zoom meetings with various members of the team.Eight Zoom meetings total, from April 10 to June 2, with a neuropsychologist, a neurologist, a psychiatrist, a nurse practitioner, and the doctor who seems to be overseeing everything. (I’ll insert the notes from two of these meetings below.) After this, the group who interviewed me met to decide whether I should proceed with the operation.Apparently they all agreed I was a “go,” so I returned to Mount Sinai on July 12 to meet Dr. Brian Kopell, the doctor who will perform the surgery.He explained that I will undergo a series of operations and follow-up visits stretched out over days or weeks.
But there’s still more to do before we get to the main attraction (inserting two electronic wires deep into my brain and connecting them to a battery pack that the doctors will install in my chest).I have to undergo an MRI of my brain, before which I have to visit my primary care doctor who will verify that I can handle the MRI, because it is done under general anesthesia.
And I’m sure there will be additional preliminary steps to take.
It would be great if I/we could accomplish everything by the fall, so keep your fingers crossed.
I’ve attached below a video of Dr. Brian Kopell, in which he debunks a few of the myths surrounding DBS.
Tally ho!
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Here are the written notes from two of the meetings I had to make sure I qualified for DBS.
First, my meeting with a psychiatrist:
Reason for visit:
Psychiatric screening for Deep Brain Stimulation (DBS) for Parkinson’s Disease (PD).
HPI
Parkinson symptoms started in 2010, Dx in 2012. Most bothersome symptoms are OFFs a couple of times per day at random moments. When OFF needing to walk with a cane due to slowness and shuffling. No mental problems, no anxiety or depression. No problems when ON, only dyskinesias. In past on higher ropinirole dose food cravings and dyskinesias.
More constant lack of verbal fluency, problems making coherent sentences, limiting conversation but no avoidance. Mild short-term memory problems. No hallucinations. No impulse control problems. No apathy.
In distant past has seen relationship counselor but no other psychiatric history. In 2018 started sertraline by neurology team for anxiety and mood.Is a little concerned if DBS will work having seen some people with negative effects.
Non-motor scales
UPDRS III Total Score OFF 61 UPDRS III Total Score ON 22
I have reviewed the patient’s medical history in detail and updated the computerized patient record.
Physical Exam
Constitutional:
Appearance: Normal appearance. He is normal weight. Neurological:
General: No focal deficit present. Mental Status: He is alert and oriented to person, place, and time. Dyskinesias head and torso. Psychiatric: Attention and Perception: Attention and perception normal. He does not perceive auditory or visual hallucinations. Mood and Affect: Mood is not anxious or depressed. Affect is responsive. Affect is not angry. Speech: Speech is not delayed, slurred or tangential. Behavior: Behavior is not slowed or withdrawn. Behavior is not agitated. Thought Content: Thought content is not paranoid or delusional. Thought content does not include suicidal ideation or suicidal plan. Cognition and Memory: He exhibits impaired recent memory. He does not exhibit impaired remote memory. Judgment: Judgment normal.
Conclusion
Psychiatric screening for DBS of 70 y/o male with advanced PD. No psychiatric symptoms or contra-indications for DBS.
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Second, my meeting with a Nurse Practioner in the Neurology Department:
Mr. Ballard is a 70 y.o. right handed male with PD since 2012 here for pre-operative neurologic evaluation for DBS.
Patient reports been diagnosed with PD since 2012. Initial symptoms consisted of slowness in movement and tremors of the right arm.
Also reports having loss of smell two years prior diagnosis.
He was evaluated by a neurologist, had spinal tap and was told that he had ALS or multiple sclerosis. Then he saw multiple neurologist for a second opinion and was diagnosed with PD.
After diagnosis, he was started on a levodopa trial and experienced good clinical response which confirmed the diagnoses.
Then, medication was stopped and it was recommended to treat symptoms with pharmacological measures.
Then he started experiencing worsening tremors, dragging of the right leg and was restarted sinemet.
The dose of medication was adjusted overtime. Symptoms were controlled for many years. Then he started experiencing motor fluations and dyskesias in 2018.
Patient is currently taking sinemet 2 tabs 6 times daily Q3hrs . Latency to onset 20-40 mins. One lasts about 3 hrs but there are times when the medication wears off faster. He reports experiencing unpredictable OFF for which he uses the parcopa 1 tab as needed.
He is a retired director of a charter school in the bronx. He had to stop working last year due to the PD symptoms and worsening OFF time.
He reports doing cycling at home, everyday for 20 mins. He does PT exercises and yoga and stretching exercises at home.
Current Motor Symptoms:
Tremors- Right hand tremors. Tremors are bothersome and interferes with his ability to do ADl’s to the point that he has been forced to use the left hand.
Bradykinesia- Generalized
Rigidty- Diffused R>L
Gait (including freezing) -slow, unsteady, shuffling, needs the assistance of the cane. Has difficulty initiating movement. No Freezing of gait.
Dystonia-None
Non-Motor Symptoms:
Cognitive-None
Mood- feels tired when OFF med, irritable and anxiety, stable on clonazepam. He worries about disappointment
Impulse control disorder- none
Speech/swallowing – soft, low voice, has difficulty with verbal fluency when having a conversation. He is does speech therapy exercises independently. At time has difficulty swallowing when drinking fluids and also when eating solid food. He coughs and chokes. He has never had a speech and swallow evaluation.
Dysautonomia-Occacionally constipation, he has increase his fiber consumption. Mild urinary urgency or frequency but this is not problematic. No orthostasis.
Sleep- He had difficulty falling sleep , which improved with clonazepam at bedtime and also smoking marijuana. Denies vivid dreams or dreams re-ennactment behavior.
Hey Bruce,
We have a lot in common besides PD. I’m an avid traveler, heading to Mongolia in September for the Golden Eagle Festival. I too am 68 and had DBS surgery in November of 2021.I have recently published a book, No Turning Back. The book consists of 11 poems chronicling my transformational experience from being diagnosed with Parkinson’s disease to experiencing life-changing “early” DBS. The purpose of my book is to start a conversation that will hopefully become a movement in the Parkinson’s community to change perceptions of deep brain stimulation (DBS).
Any advice or thoughts on how to expand this movement would be most appreciated.
The book has been very well-received as a free download on major Parkinson’s sites ─ Michael J Fox Foundation and Parkinson’s Foundation. We have also produced a limited-edition hard copy of the book. I would be happy to send you a hard copy if you will would provide your mailing address.
You can check out the book PDF using the links below.
Many people in the PD community have suggested that it would be important to offer an audiobook version for those who have difficulties dealing with technology or handling hard copy books. We will have an audio book by the end of August or early September.
No Turning Back presents the intersection between Art and Science:
ART: The poetry chronicles John Foley’s raw, emotional journey from PD diagnosis to life-changing DBS surgery and features stunning artwork by Mary GrandPré, contemporary artist and world-renowned illustrator of the Harry Potter series. While the poems take the audience through a wide range of emotions, ultimately, No Turning Back is a story of hope and a demand for challenging norms.
SCIENCE: The book’s forward is written by Mayo Clinic neurosurgeon, Dr. Kendall Lee, whose life’s work is making DBS safer, faster and more effective. The book narration provides the latest clinical research conducted by Vanderbilt University on early DBS and emotional vocabulary to empower people with PD to advocate for themselves. Our goal is to change current perceptions from DBS being seen as the treatment of last resort to adding years of quality of life “if done early.”
Good luck on your journey.
John Foley
I am currently going through the evaluation process for DBS as well. While I’ve read much positive feedback about the surgery, I still have reservations about actually getting it. Of course there are all the risks that come with having brain surgery but besides that I’m worried that it won’t have the impact that I had hoped for. Do you have any doubts about the surgery?
Hey Bruce,
We have a lot in common besides PD. I’m an avid traveler, heading to Mongolia in September for the Golden Eagle Festival. I too am 68 and had DBS surgery in November of 2021.I have recently published a book, No Turning Back. The book consists of 11 poems chronicling my transformational experience from being diagnosed with Parkinson’s disease to experiencing life-changing “early” DBS. The purpose of my book is to start a conversation that will hopefully become a movement in the Parkinson’s community to change perceptions of deep brain stimulation (DBS).
Any advice or thoughts on how to expand this movement would be most appreciated.
The book has been very well-received as a free download on major Parkinson’s sites ─ Michael J Fox Foundation and Parkinson’s Foundation. We have also produced a limited-edition hard copy of the book. I would be happy to send you a hard copy if you will would provide your mailing address.
You can check out the book PDF using the links below.
https://www.michaeljfox.org/books-resources
https://www.parkinson.org/living-with-parkinsons/stories/john-foley
Many people in the PD community have suggested that it would be important to offer an audiobook version for those who have difficulties dealing with technology or handling hard copy books. We will have an audio book by the end of August or early September.
No Turning Back presents the intersection between Art and Science:
ART: The poetry chronicles John Foley’s raw, emotional journey from PD diagnosis to life-changing DBS surgery and features stunning artwork by Mary GrandPré, contemporary artist and world-renowned illustrator of the Harry Potter series. While the poems take the audience through a wide range of emotions, ultimately, No Turning Back is a story of hope and a demand for challenging norms.
SCIENCE: The book’s forward is written by Mayo Clinic neurosurgeon, Dr. Kendall Lee, whose life’s work is making DBS safer, faster and more effective. The book narration provides the latest clinical research conducted by Vanderbilt University on early DBS and emotional vocabulary to empower people with PD to advocate for themselves. Our goal is to change current perceptions from DBS being seen as the treatment of last resort to adding years of quality of life “if done early.”
Good luck on your journey.
John Foley
.
I am currently going through the evaluation process for DBS as well. While I’ve read much positive feedback about the surgery, I still have reservations about actually getting it. Of course there are all the risks that come with having brain surgery but besides that I’m worried that it won’t have the impact that I had hoped for. Do you have any doubts about the surgery?