Submitted by Leanne Johnston,
Collingwood & SGB Parkinson’s Support Group.
First, some background on my Parkinson’s journey, as it seems I was an unusual case. Parkinson’s Disease (PD) developed so quickly; in the early stages the doctors said it couldn’t be PD.
In January 2018, I was 59 years of age, working as an EA (Educational Assistant) in an elementary school. It was physically and mentally active dealing with the physical and mentally challenged students in my class. One day, I experienced vertigo. My General Practitioner (GP) thought it was an inner ear infection, and instructed me to stay home, off work, for two weeks, and it would clear up. It did, and I returned to work two weeks later. After about six weeks, the vertigo came back, more intense, accompanied by fatigue, a stiff neck, and brain fog.
My GP referred me to a neurologist, whom I saw for the first time in May 2018. His thorough assessment revealed a presence of a reduced arm swing on the right side in my gait, and a postural jerky tremor in both limbs and mild head tremor. Mental, motor, and reflexes were normal. Bloodwork, EEG and other tests were also normal.
I returned to the neurologist in September 2018 for another assessment. Symptoms were largely unchanged.
A third visit to the neurologist occurred in November 2018. Generalized tremulousness continued, with stiffness and discomfort in the neck, on the right side only. Bloodwork, brain and spinal imaging, and a spinal tap were normal. The neurologist reported: “She remains a diagnostic challenge”. “She does not have Parkinson’s disease (PD), and I am not terribly convinced of evidence of PSP or MSA here”. (Progressive Supranuclear Palsy (PSP) is a rare brain disorder that causes problems with movement, walking and balance, and eye movement) (Multiple system atrophy (MSA) is a progressive neurodegenerative disorder characterized by a combination of symptoms that affect both the autonomic nervous system (the part of the nervous system that controls involuntary action such as blood pressure or digestion) and movement.). He felt it was not Parkinson’s Disease as symptoms had come on to quickly. A trial of Clonazepam was prescribed. (Clonazepam is a medication used to prevent and treat seizures, panic disorder, anxiety disorders, and the movement disorder known as akathisia (akathisia is the inability to remain still. It is a neuropsychiatric syndrome that is associated with psychomotor restlessness.))
A fourth visit to the neurologist occurred in December 2018. He reported: “She is with every passing visit becoming more of a diagnostic conundrum to me”. An initial suspicion of ‘Parkinsonism’ was dismissed and has come around again full circle. While not convinced I have PD, features point to some degree of ‘Parkinsonism’ (this term is used when someone does not have PD but exhibits PD like symptoms.) A trial of Sinemet (Sinemet contains a combination of carbidopa and levodopa) was prescribed to see how I would respond to it.
I returned for a fifth visit in January 2019, and I had a significant improvement in tremulousness, rigidity, and mobility. Because I had responded well to Sinemet, a diagnosis of PD was confirmed.
I returned for a sixth visit in April 2019. Things were stable, except neck stiffness and pain were still an issue and worsening, again on the right side only. A nerve conductive test was done on my neck and shoulders and was normal. During the remainder of 2019, trials of various drugs provided no relief to the neck stiffness and pain.
My neurologist then referred me to the Parkinson’s Disease and Movement Disorders Clinic at Toronto Western Hospital (TWH). My first appointment was April 2020. I saw Dr. Anthony Lang, who is the head of the clinic. A full assessment was done. A Levadopa challenge confirmed my diagnosis of Parkinson’s Disease and cervical dystonia, which worsened in a low dopamine state. Several trials of Botox injections during the remainder of 2020 provided no relief to the neck stiffness and pain.
DBS Experiences
In addition to the neck stiffness and pain, my cervical dystonia made it difficult to turn my head in one direction and made it hard to keep my head upright. My head was continually going forward. My dyskinesia took the form of constant shoulder shrugging, like I was trying to pull my head down into my torso. Because of my worsening cervical dystonia coupled with dyskinesia, and my unusual sensitivity to Levodopa, I was referred to the DBS clinic in April 2021. DBS is normally done on candidates who have had Parkinson’s for several years, typically 5 to 10, because of the long-term effects of using Levadopa. DBS typically reduces the need for Levadopa. Because my PD progressed so rapidly, and alternate treatments were ineffective, coupled with an unusual sensitivity to dopamine, the team thought DBS was a good option for me. The DBS assessments were performed, including neurological, neuropsychological, and neuropsychiatric. These took most of a day. Much of the assessment was for memory and cognitive ability. My husband also completed a couple of surveys regarding how my condition was progressing, and how I was coping with daily living routines. After all assessments were complete, the team concluded that I was indeed a good candidate for DBS. The DBS clinic provided me with an excellent booklet, describing how DBS works, the surgical steps, and what to expect. My DBS surgery was scheduled for November 2021, but a cancellation occurred, and they called on Monday October 4th and said it could be done that week on Friday. The short notice was a reality shock, but I took the opening, and I had the surgery done October 8th, 2021. DBS treatment involves a mild electrical current which is used to stimulate a particular area of the brain that controls movement. The stimulation changes the activity of the brain cells in a way that helps to relieve the symptoms of PD. The electrical stimulation comes from a neurostimulator implanted in the chest which sends electrical stimulations to the brain via electrodes implanted in a targeted area of the brain. DBS provides relief from tremors, rigidity, slow movements, dyskinesia, and motor fluctuations. The surgery lasts about 6 hours. The first 4 hours involves implanting of the two electrodes into the targeted area of the brain. You are conscious during this time as the surgeon is questioning you about what you are feeling to ensure accurate placement of the electrodes. In my case, the electrodes were placed in the ‘gpi’ area of the brain. You are then put under full general anesthetic for the remainder of the procedure, while the wires from the electrodes are routed under your scalp, down your neck, and into your chest and the neurostimulator is implanted. The hospital stay lasted two days. After a healing period of three months, the neurostimulator was turned on for the first time in January 2021. An initial program was setup. Several more visits, each a month apart, were scheduled to gradually increase stimulation, and tailor the programing to my specific needs. Each time, physical and gait assessments were done while they adjusted the neurostimulator program. DBS surgery generally reduces the need for Levadopa. Some people see a 50% reduction, but each person is different. My reduction so far has only been slight, as my DBS surgery was primarily for dyskinesia.
The benefits of DBS for me have been remarkable. My tremors are virtually non-existent, as is my dyskinesia. The cervical dystonia which made it difficult to keep my head up, resulting in a forward stoop has also virtually disappeared, so my posture is near normal again. Several people have told me that if they didn’t know a have PD, they would never know I have it, based on my appearance now. While there can be side effects of DBS treatment, (speech, compulsive behaviour, personality changes, etc.) I have experienced none. Many side effects can be reduced or eliminated by the DBS settings. A remote and communicator device is supplied, to allow you to check battery condition, turn the system on or off, and to alter the settings up or down within parameters that the DBS team setup.
The health care teams at Toronto Western Hospital, both in the Movements and Disorder Clinic, and in the DBS Clinic, are wonderful. I cannot speak highly enough of these teams. This is where our health care in this province truly shines. TWH is also a world-renowned training centre for young doctors. During my DBS journey, I saw several different interns who performed assessments, and did the neurostimulator programming. All were exceptional. At each appointment, they reported to Dr. Lang, who came in at the end of each appointment.
I cannot over-emphasize my gratitude to the health care teams, and for the ability to have had this surgery. It has given me a greatly improved quality of life, and I can do things again that I otherwise wouldn’t be able to do. I still have fatigue, but my tremors, and especially my dyskinesia, are all but eliminated. I strongly recommend having DBS surgery if you are fortunate for it to be an option for you and it is recommended for you.