People with Parkinson’s disease in BC who are eligible for Deep Brain Stimulation (DBS) continue to face undue hardships and suffering due to the excessively long wait lists. The wait time for DBS in British Columbia is three years after referral from a neurologist. This compares to six to eighteen months in other provinces. BC has one neurosurgeon qualified to perform DBS on people with Parkinson’s, while Alberta, with a smaller population than BC, has two qualified neurosurgeons.
DBS is a surgical procedure used to treat a variety of disabling neurological symptoms—most commonly the debilitating symptoms of Parkinson’s disease (PD), such as tremor, rigidity, stiffness, slowed movement and walking problems. At present, the procedure is used only for patients whose symptoms cannot be adequately controlled with medications.
As Parkinson’s disease is a progressive neurological disorder with a window of opportunity allowing some to improve the condition surgically, a lost year of benefit may be devastating for a patient, condemning them to a life of disability with flailing limbs, debilitating tremors, and/or the inability to move, work or lead a normal life.
Expanding the DBS surgery program in BC will enable these people to live independently in their own homes for many more years. For a young person, it may allow them to get off of disability, go back to work and pay taxes. For older patients, it enables spouses to be released from the caregiver role, improve their own health and, if still of working age, become re-employed. Life at home may then continue instead of resulting in disability requiring long-term care and possible hospitalization as they wait for a space. The payoff for the healthcare system will be fewer hospitalizations, fewer emergency visits and avoidance of early admissions to long-term care.
On waiting for Deep Brain Stimulation...
“I was diagnosed with Parkinson’s disease when I was 49 years old at the height of my teaching career. Life with my family was going well, and I had two wonderful children. I was absolutely blind-sided by the diagnosis, and I don’t even remember driving home. My symptoms progressed rapidly and were not typical, so I had to step away from a job I loved. At this stage in the progression of the disease, I am looking for relief from the incredible suffering I have to ensure every evening. My hope is that this surgery will allow me to capture as many good years as I can and make the most of what I have left. I have two beautiful grandchildren that I can’t even talk to because Parkinson’s has taken my voice. The extensive waitlist is putting additional and unnecessary stress on our medical system by forcing people like me to make multiple trips to the emergency room. Furthermore, all signs are pointing towards the incidence of Parkinson’s disease growing exponentially. Something needs to be done now, so people like me can remain in the workforce, as tax paying citizens, and not be forced to live a life confined to our homes on disability.”
- Maureen Hafstein
“I have been close friends with Maureen since before her Parkinson’s diagnosis, observing her journey with the disease for over a decade. To provide her husband and caregiver, Irwin, with a break, I helped with her care for two and a half weeks. I witnessed her dyskinesia, tremors and torturous withdrawals. When she is in the process of withdrawals from her medication, she writhes like a fish on a hook, then sits on the edge of a table and rocks, then moves around the table shaking – stopping periodically to put pressure on one foot or the other to break the patterning. To move up the stairs to her bedroom the muscles in her legs shake convulsively. In the bedroom, she lies on her back moving back and forth, trying to hold both of her feet to arrest the motion. During this process she sweats as though running a marathon and say only three words: Kleenex, water and help. When it is over, she is completely exhausted. I ask her to rate her to rate her withdrawals I have witnessed on a scale of 1-10. She replies that they’ve been a 5. Her symptoms have become so bad that she has looked into dying with dignity arrangements. The wait seems interminable and unsustainable. My friend Maureen, and others on the waitlist, need urgent care. Please do not fail them.”
- Patricia Wilson, friend of Maureen Hafstein
“Before Parkinson’s came along I was a fairly active person. My favorite pastime was traveling with my son and daughter on hockey excursions; I enjoyed being employed as a heavy duty mechanic in the mining industry; and I was (and remain) happily married to a wonderful woman, Shelly. I was 52 years old, and life was great. When I was diagnosed with Parkinson’s my initial reaction was total disbelief. Fast forward several years after my diagnosis, and my life was drastically different than it had previously been. I was consuming large amounts of medications daily, as my condition had deteriorated considerably. Dyskinesia, which is uncontrollable movement, greatly affected my quality of life on a day-to-day basis. While the wait for Deep Brain Stimulation (DBS) was frustrating, I finally had my surgery in June of 2012. I was initially told the procedure would only control my tremors, but I discovered nearly everything Parkinson’s had taken from me (speech, etc) returned to my pre-Parkinson’s state. It gave me back my life.”
- Terry Hume
“The wait for Deep Brain Stimulation surgery was torture. I spent many hours studying the risks and benefits of the surgery. Waiting to see the solution in recovering one’s quality of life, and not having reasonable access, was enough to depress a saint.”
- Garry Toop
Frequently Asked Questions (FAQs)
In summary, there are a number of medical conditions where symptoms in the body occur because of an abnormal activity of the brain. Deep Brain Stimulation (or DBS) is a new way of “turning off” a small area of the brain. It involves placing a small platinum electrode or wire into the abnormal area of the brain. Instead of destroying the area (like we used to do), we use high frequency electrical stimulation to “turn it off”.
The electrode is connected by a subcutaneous wire to a pacemaker which sits under the skin, usually in the chest. When electrical pulses are produced by the pacemaker and sent to the tip of the electrode, the brain cells in the region of the electrode are “turned off”. The pacemaker can then be adjusted to maximize the benefits (turning off the malfunctioning area) and minimize the side effects (turning off adjacent important areas). That is the greatest strength of DBS – it can be adjusted to maximally benefit an individual patient and if there are unwanted side effects, it can be turned down.
Patients with Parkinson’s disease have areas of their brain that are overactive and a DBS electrode can be placed in those areas to correct the brain activity. This may be a confusing concept for some because everyone has been told that Parkinson’s disease is due to a loss of the dopamine brain cell. Loss of this cell can result in overactivity (or underactivity) depending on whether the dopamine cell was working as a stimulating or inhibiting cell.
DBS surgery is reserved for those patients who are having unacceptable side effects from their medications. If you are doing well on your medications, you should not have the surgery.
Neurosurgeons and specialists will be looking for three motor symptoms that do not respond to optimal medications in order to determine if an individual is a good candidate for DBS:
- Motor fluctuations
Who is a poor candidate for Deep Brain Stimulation?
- Those with a diagnosis of an atypical parkinsonian syndrome (eg, progressive supranuclear palsy, multiple system atrophy, dementia with Lewy bodies, corticobasal degeneration, or vascular parkinsonism). These people are often referred for DBS because of poor response to medical therapies but, unfortunately, typically do not respond well to the surgery.
- People with Parkinson’s disease whose primary goals are to improve speech, respiratory and pharyngeal control, postural instability (history of falling), and freezing. Several long-term studies have shown that these dopaminergic-resistant symptoms continue to progress despite changes in stimulation parameters and improvement of other motor symptoms, such as tremor, rigidity, and bradykinesia.
- People with more than mild cognitive dysfunction, active psychiatric disease, dementia or significant cognitive impairment. This is mostly due to reports of cognition in Parkinson disease worsening irreversibly after deep brain stimulation surgery in patients with pre-existing cognitive impairment. Most centres use detailed neuropsychological testing to screen for dementia.
The benefits of DBS are directly related to the surgical target. Targeting the thalamus will reduce tremor by approximately 80-100%. Targeting the pallidum will reduce dyskinesia by approximately 80-100%. Targeting the subthalamic nucleus will reduce motor fluctuations. The details are best reviewed with your neurosurgeon and, of course, vary from patient to patient.
DBS does not improve the non-motor symptoms of Parkinson’s disease. Non-motor symptoms include but are not limited to dementia, depression, loss of smell, constipation, bladder dysfunction, imbalance (this is complicated and can be improved in some), impulse control disorders (also very complicated and can potential be improved), and REM sleep disorders.
While the electrodes in the brain will stay forever, the pacemaker will eventually run out of power and need to be changed in approximately 3 years (range 2-7 years). The effects or benefits of the DBS will continue forever, but new symptoms may develop that are not controlled by the DBS. For example, if a patient develops dementia years after the DBS surgery, the device will not be able to help this. The patient’s quality of life will then deteriorate because of the new dementia, not because the DBS stopped working.
There are two waiting lists. The first (W1) is the time from when your neurologist puts in a referral for surgery until the time of your neurosurgical appointment. W1 is approximately 2-3 years. The second (W2) is the time from deciding you want surgery to the day of surgery. W2 is approaching 2 year.
Help make the Deep Brain Stimulation program more accessible for British Columbians