Laura and Diane in 2013
Since 2010, every three years the international Parkinson’s community — researchers, medical personnel, Persons with Parkinson’s, caregivers — has put on a worldwide conference to share information and build community. I had the great opportunity to attend Montreal (2013), and Portland, OR (2016). I elected not to attend 2019 in Kyoto, Japan but fortunately, my buddy from the Montreal conference, Diane Daignault of British Columbia, did attend and graciously shared her notes with me. I’ve edited lightly. She commented: “The choices of lectures seemed endless – with lots of great topics based in both research and practical aspects. There were also demonstrations, health rooms and theatre presentations to watch as well. Caregivers had their own space for learning and conversing…. There really was something for everyone.”
Hypotension (Low blood pressure)
Tim Anderson from New Zealand discussed the link between low blood pressure (aka hypotension), dizziness and Parkinson’s. Anderson had a number of suggestions on how to manage hypotension during the day:
- Small, frequent meals rather than a large meal keeps blood pressure steady.
- Coffee in the morning and salt during the day may even the blood pressure during the day.
- Use compression stockings
- Get up slowly, taking time to move from lying down to sitting up, and from sitting up to standing.
Frequently, PD patients with hypotension have high blood pressure during the night which complicates matters. Anderson suggested addressing the nighttime high blood pressure by: raising the head of your bed so that the bed is lower at your feet (try putting blocks under the bed legs at the head of the bed).
Jennifer Goldman of the US spoke about psychosis which may include illusions, a false sense of presence, hallucinations, and delusions. This can cause caregiver strain as well as financial strain. Sometimes clozapine, quetiapine, pimavanzserin and/or cholinesterase inhibitors are used as drug therapy.
Shen Yang Lim from Malaysia discussed autonomic challenges that can be common, even in early PD. Gastroparesis (delayed gastric emptying) can be helped by low fat meals, help from a dietitian or the drug domperidone. To control drooling, there are drops available. Urinary dysfunction and constipation may be treated with anticholinergics, mirabegron or colifenacin drugs.
Daniel Weintraub of the US discussed cognitive impairment. Vascular risk factors and orthostatic hypotension can cause cognitive impairment. Anticholinergics and benzodiazepine and physical exercise may reduce the problem. Patients with psychosis and sleep problems are more likely to do worse. Rivastigmine helps for PD dementia while memantine has no effect.
Surgical advances & Infusions
Deep Brain Stimulation (DBS) – Hardware
Dr. Kelly Foote of USA spoke on the topic of deep brain stimulation (DBS). Deep brain stimulation is used for treatment of PD symptoms, particularly tremor and dyskinesia. In his opinion, the placement of the probes is the most important aspect of this surgery. The surgeon, neurologist, and hardware programmer collaborate to choose the best brand of programmable hardware (with up to 8 contact points), depending on each patient’s unique situation. Hardware includes: Medtronic, Abbott’s St. Jude, and Boston Scientific. Each brand has pros and cons. In the past, deep brain stimulation hardware had challenges with replacing batteries and wire leads breaking in the system. Both have been reduced in the new hardware with rechargeable batteries now an option and the newest hardware being equipped with zero-wire-lead-breaking technology.
Deep Brain Stimulation (DBS) – Programming
Delving further into deep brain stimulation (DBS), Professor Michele Taliati, also from the US, discussed programming DBS devices. He claims that DBS programming is most important. Either one or two probes (bi-polar) can be placed in the brain. Two probes can reduce side effects. Programming allows for the adjustment of pulse width, amplitude and rate. He also introduced the concept of “impedance”. The medical dictionary defines it as “the resistance in alternation current circuits.” Medical equipment is often rated according to impedance to allow for optimum performance by matching impedance rates. During the question period, he noted that patient behavior can be changed by DBS.
Peter LeWitt touched on some novel therapies. He explained that Levodopa goes to the gut, than to the brain. Sometimes it stops in the stomach, where food can affect its rate of absorption in the gut. After that, the Levodopa crosses the blood/brain barrier. As a result of this complex absorption process, Duodopa is now being used and new ways of administering it are being explored. For example, a novel drug therapy being tested is the “accordion pill” which dissolves slowly. Alternatively, CVT-301 is an inhalation powder meant to produce rapid rescue when the pills don’t work. While ND-0612 is infused under the skin for rapid rescue. Another option is Apomorphine which is intended for on demand by injection. Under the tongue medication and continuous injection are also being considered and tested.
Other Parkinson’s research
Alpha-Synuclein in your gut
I attended a technical lecture about alpha synuclein (A-syn). Since the last congress three years ago, A-syn has been found in the appendix. Apparently, a-syn spreads from the appendix to the gut and by the vagus nerve to the brain. Different shapes of a-syn aggregation have been identified with each representing a different disease – i.e. PD (spaghetti), ALS (ribbon fibril) or MSA (linguine). These aggregates form Lewy bodies. The scientists have discovered that a-syn connects with 178 proteins; however it is not yet known if any of these cause PD or are a result of it. What I gather from this is that the researchers have learnt a lot but are no closer to finding a cure. Additional testing and research is needed to further define the role of a-syn and Lewy bodies in relation to PD.
Laurie Mischley from Bastyr University in Seattle, WA offered practical research and advice around PD. This was very welcomed by the audience. Mischley has been surveying People with Parkinson’s to find what helps and what makes PD worse. One of her key conversation points was that loneliness plays a significant role in the health and wellness of those with PWP. In fact, her research shows that loneliness can wipe out the advantages of 6 days/week of exercise. She also noted that it is impossible to link the impact of one type of food to PD or on those with PD in a scientific trial, as people need variety of foods for proper nutrition. Additional information is available on this summary of her recent research: https://vimeo.com/191664871
Music and Parkinson’s
One of the most surprising lectures I attended examined the link between music and Parkinsons. The leaders explained that music and movement can change the brain. Even those with late stage PD benefit from singing, dancing, or swaying to the music. The type of music or dancing doesn’t matter – they all work and improve the health and wellness of those living with PD.