I attended the Parkinson Society lecture November 12, 2014 at the Toronto Botanical Gardens.
The keynote speaker for the evening was Dr. Alfonso Fasano and Nurse specialist from the Movement Disorder Centre of Toronto Western Hospital. The evening was presented by the Parkinson Society Central & Northern Ontario, in partnership with Parkinson Society Canada
First, let me say that it was very well attended – there was not an empty seat in the house!
There were health care providers, like me, but people with Parkinson’s disease and their families made up the majority of the audience.
From what I could tell, the majority of the audience were also seniors.
The keynote speaker, Dr. Fasano commented on the audience make-up and attributed it to the (promising) title of the lecture: New Parkinson’s Treatment Options: Duodopa and Deep Brain Stimulation.
I think he was right. People wondered whether there was something new to be offered. Whether there was hope.
Here’s what I learned.
“New” Parkinson’s disease treatments
The interventions that were presented are not entirely new, and they are not highly available.
Duodopa is a gel form of Levodopa delivered with use of an external pump and tubing, directly to the stomach and small intestine. It involves a minor surgical procedure, takes 45 minutes to perform and does not require a hospital stay.
There are only 5 centres in Ontario offering this intervention. This intervention has been successful in eliminating the extremes of “on” and “off” periods of medication effectiveness and has been associated with an improved quality of life and social functioning for patients.
Deep Brain Stimulation was described as a “pacemaker for the brain”. It involves the placement of an electrode in the brain attached to a small device inserted under the skin, below the collarbone. Just as with the Duodopa therapy, patients who receive this intervention enjoy less dyskinesia and improved quality of life and social functioning.
There was a lot of discussion around “best candidates”. The presenters defined best candidates as having:
- current medical therapy (sinemet tablets) that is not effective
- a quality of life and social function could be improved by introduction of a new therapy
- a lack of major systemic disease in the proposed recipient of therapy (this included reasonable lifespan expectation and that a person be a low surgical risk),
- been assessed by the team as being motivated to improve their lifestyle
- a supportive caregiver.
Many members of the audience were quite rightfully disturbed by the implication that those over 65 years of age would not be eligible for the interventions.
The presenters were quick to point out that there was not an arbitrary cut-off that would discriminate against seniors, but that each case was taken on its own merits – that said, the video footage of patients who had experienced success with these interventions did not include anyone over 50 years old.
I learned that a dissolvable Sinemet tablet already exists and has been used for the past 15 years – but that it is only available in Europe, and that a sublingual form of Sinemet is also available and is thought to work more quickly to address dyskinesia, but it is only available in the United States.
The speaker addressed the question of a transdermal patch to deliver medication – apparently it is available, just not very effective.
Another audience member asked about how to deal with violent dyskinesia. A Registered Nurse from the Movement Disorder Clinic said that they offer one crushed sinemet tablet, in applesauce followed by a carbonated beverage and this seems to be effective more quickly.
Dr Fasano showed a picture, taken during a gastroscope examination, that showed a sinemet tablet sitting in the stomach of a patient, more than 12 hours after ingesting the medication. It was a reminder of the delayed gastric emptying that can be a feature of Parkinsons. Needless to say this impacts on the effective delivery of the drug.
One of the Nurses mentioned a patient with three sinemet tablets, lodged in his throat – he had been advised to take his medication with a sip of water. He had followed the directions explicitly and the medication had not been propelled to the stomach – her advice is to wash the medication down with plenty of water.
And she cautioned, even if the pharmacist has slapped a label on the bottle of your Parkinson medication that directs the you to have medication with food, Sinemet is actually more effective on an empty stomach and definitely not in combination with protein.
Reality – access is key
In addition to there being only 5 centres in all of Ontario offering Duodopa intervention, the couple sitting next to me shared their frustration that with all of the talk of multidisciplinary care, and new treatment options, the Movement Disorder Clinic was so busy that when the couple called recently to book an appointment, they were told an appointment would not be available for the next 24 months!
So, while may not have come away with a lot of hope for “new” interventions, and I’m not confident that we will see any of our clients at Eldercare Home Health being offered either Duodopa or deep brain stimulation therapy due to their advanced age, there were valuable reminders of best practices in taking Parkinson’s disease medications and a review of the contributing factors to good therapeutic effect.