Insight into Parkinson’s 2020, Day 3 – Conference notes

Insight into Parkinson’s 2020, Day 3 – Conference notes

Insight 2020 is the largest online conference for people with Parkinson’s disease (PD), their caregivers, and those who work with the PD community. It took place this year on April 1-3, and covered a wide range of topics, from living positively to the latest PD research. We at Stanford Parkinson’s Community Outreach attended all three days of the virtual conference and took notes on some of the talks that seemed most interesting or relevant to our audience. Highlights from Day 3 of the conference are below.

To see the agenda for the full conference, visit the Insight 2020 event website here.

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Maximizing medication efficacy

Speaker: Dr. Maria De Leon, Texas

Insight into Parkinson’s Conference, April 3, 2020

Notes by Lauren Stroshane, Stanford Parkinson’s Community Outreach

Dr. De Leon discussed how to balance life, medicine, and Parkinson’s disease (PD). She is a cancer survivor, retired neurologist, and PD patient and caregiver.

Those who are newly diagnosed likely have a large number of questions and want to make detailed plans for the future. The speaker described the adjustments she had to make when she was diagnosed with PD, from being someone who had planned her whole career as a doctor in detail and felt in control of her life, to someone who had to reorient her life and identity. She gradually learned that she could still lead a good, full life as someone with PD.

General advice for the newly-diagnosed:

  • Make the right choices for yourself and prioritize your needs – but not at the expense of others.
  • Think in blocks of time, such as 1 month or 6 months, not the entire possible future.
  • You can have everything you need, not necessarily everything you want.
  • Be realistic in your goals and knowing where your body is at now.
  • The only constant in life is change. Try to be open to it.

There is no single treatment or regimen that fits all patients equally; everybody is different. It is important to have trust and confidence in your physician; if you do not, it’s best to find someone else to partner in your care. Don’t be afraid to try new medications; if you don’t like how the medication makes you feel, or have side effects, you can always stop taking it with the guidance of your doctor. Be open to trying a medication again, maybe in a different dose or combination, to find what works for you.

For most of her patients with early PD, she recommends a cocktail of several PD medications together, given at low doses. In her experience, this lowers the likelihood of side effects from any one medication and decreases the potential for dyskinesias.

Having a daily bowel movement will improve the absorption of your oral medications and keep you more comfortable. Lifestyle changes such as increasing dietary fiber, hydration, and exercise can be very helpful. If constipation remains an issue for you, talk with your primary care doctor about what else you try to keep your bowels regular.

If you have other health issues, whether related to PD or not, make sure these are being managed as well. Other health issues can negatively impact your PD symptoms. For instance, if you have difficulty sleeping, work with a primary care doctor or neurologist to see how you can improve your rest. Over-the-counter or prescription medication can be helpful, but there also lifestyle changes – called “sleep hygiene” – that can really improve sleep as well, such as avoiding computer or phone screens right before bedtime and keeping the bedroom dark and quiet. Getting good sleep and addressing other health problems that you may have will help to maximize the effectiveness of your PD treatment and overall quality of life.

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The placebo effect in Parkinson’s disease

Speaker: Prof. Damien Finniss, professor at the University of Sydney Pain Management Institute

Insight into Parkinson’s Conference, April 3, 2020

Notes by Lauren Stroshane, Stanford Parkinson’s Community Outreach

The speaker is an experienced anesthesiologist and acknowledged that he does not have experience specific to Parkinson’s disease (PD). Nonetheless, the topic is relevant for those with PD and those interested in PD research.

A placebo is a “sugar pill” or other type of treatment that does not actually confer any therapeutic benefit in itself, such as might be used in research to provide a control. The placebo effect is a term that describes a paradox: it has been scientifically observed that the mere act of administering something the patient believes is therapeutic, can result in therapeutic benefits for the patient. The power of placebo seems to come from the therapeutic ritual and the individual’s belief that they have received help.

  • You don’t have to give a placebo to get a placebo effect.
  • Placebo effects are present in routine clinical practice.
  • The therapeutic ritual / context is powerful in triggering biological processes that modulate disease symptoms.

Therefore, he feels that the placebo effect is somewhat inherent in everything doctors do. In the current research, there are core elements that seem to influence how successful the placebo effect will be:

  1. Expectancy – does the patient expect the treatment to be effective?
  2. Pavlovian conditioning – has the patient been previously treated with a drug that they felt was effective?
  3. Social learning and observation – if the patient sees someone else improve from the treatment, their own placebo response will be larger.
  4. Choice of treatment – does the patient get to select from different options?
  5. Level of desire / motivation to reduce symptoms – does the patient want to feel better?
  6. Adherence – does the patient stick with the treatment plan?
  7. Genetic variation – some people are more susceptible to the placebo effect than others

There is not one placebo analgesic effect – there are many different placebo effects. They use different pathways and neurotransmitters and vary greatly. Fascinatingly, placebo effects operate even when no placebo is given. It also matters how the clinician interacts with the patient – the “therapeutic ritual” is important. Active listening, empathy, thoughtful silence, communication of confidence, all play into how effective placebo treatment will be.

Doing placebo studies in a research setting is one thing; deceiving patients in a clinical setting is quite another and raises serious ethical questions. An interesting study invited patients to participate in a trial where they received inert “sugar pills” but were told the pills had “self healing” properties. They were told that the placebo effect is powerful, that the human body can respond automatically like “Pavlov’s dogs,” and that a positive attitude helps but is not necessary. Effectively, the individuals were informed that they were taking a placebo. Surprisingly, the placebos were still highly effective and many patients wanted to continue the therapy!

Takeaways:

  1. Placebos are not inert.
  2. There are multiple, specific placebo effects.
  3. Placebo effects are genuine psychobiological events that are generated and maintained by the psychosocial context around the patient.
  4. You do not need to actually give a placebo in order to generate placebo effects.
  5. Placebo effects are part of routine clinical care (and life)!

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Living well with Parkinson’s disease through palliative care

Speaker: Dr. Christina Vaughan, Denver, CO

Insight into Parkinson’s Conference, April 3, 2020

Notes by Lauren Stroshane, Stanford Parkinson’s Community Outreach

Supportive care is helping a person do as well as possible for as long as possible when they have a serious illness. This is the central idea behind the palliative care medical field; the two terms are synonymous.

The palliative care specialty focuses on improving quality of life and decreasing suffering by addressing:

  • Complex medical symptoms
  • Psychosocial issues
  • Spiritual well-being
  • Planning for the future

Palliative care is NOT the same as hospice care, although hospice is a form of palliative care. Both focus on quality of life within multiple domains. Palliative care refers to care of individuals with serious illness at ANY stage of disease.

A neuro-palliative care team has particular expertise in addressing the issues specific to those living with neurodegenerative disease, such as PD:

  • Neurologist / advanced practice provider
    • History and physical examination
    • Helps establish the goals of care
    • Symptom management
    • Education about disease and prognosis
  • Nurse
    • Medication review
    • Identification of medical decision-maker / power of attorney
    • Discussion of advance care planning
    • Screening for caregiver distress
  • Social worker
    • Advice on financial or insurance issues
    • Providing resources for home health care
    • Screening for caregiver distress
    • Arranging respite care
    • Assisting with logistical aspects of transition
  • Chaplain
    • Addresses spiritual / existential concerns
    • Explores social and family issues
    • Identifying and discussing grief
    • Screening for caregiver distress

There are a number of reasons why palliative care is especially relevant for those with PD. It is more than a movement disorder, and carries similar rates of symptom burden as in cancer or amyotrophic lateral sclerosis (ALS). The many non-motor symptoms of PD can greatly impact quality of life and may be difficult to manage without additional support for both the patient and caregiver. Palliative care can also help illuminate the individual’s goals of care, so that the whole care team can be aligned to meet these goals. PD also presents unique psychosocial stressors, in terms of relationships, loss of autonomy, financial strain, communication difficulties, and social isolation and stigma. Additionally, PD has a high potential for caregiver distress, which can be reduced with the support of a specialized care team. Lastly, palliative care can also help establish an advance care plan – useful for everyone, regardless if they have PD – specifying what measures the patient would want in an unexpected situation.

To assist with some of the psychosocial stressors of PD, the neuro-palliative care team could assist by, for instance, referring to an attorney knowledgeable about disability or elder law, or linking with support groups or psychotherapy.

The speaker mentioned the following quote from a noted surgeon and writer on healthcare topics:

“Our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer.”

– Atul Gawande, Being Mortal: Medicine and What Matters in the End (2014)

Some important questions that she asks her patients, and encourages patients to think about and discuss with their loved ones:

  • What was life like before PD?
  • What are you most proud of?
  • How do you define “quality of life”?
  • What do you currently enjoy and look forward to?
  • How do you make sense of your PD?
  • What’s the hardest part of this?
  • What are you most worried about?
  • What are you hoping for?

The answers to these questions may not be easy or straightforward, but they can be useful to establish what their goals and values are, and what they need most, rather than the healthcare provider making assumptions. Studies suggest that palliative care approaches in PD improve symptoms and quality of life, reduce caregiver distress, and make hospitalizations less likely.

What does it mean to live well? We don’t know until we ask. Identifying a care team to strategize with the patient on how to bring more meaning into their life can be a good place to start. Extra resources and support at home can be immensely helpful, such as respite care. Having a long-term relationship in place with a neuro-palliative care team can enrich and facilitate the quality of life for those with PD. Remember, the goal is to do as well as possible, for as long as possible, in the face of serious illness.

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One of the presentations (“All things between the sheets” by Victor McConvey) covered similar content as a recent webinar by the Michael J. Fox Foundation that was summarized on the Stanford Parkinson’s Community blog:

Sex, Love, and PD – Webinar notes

March 13, 2020