THE NEXT GENERATION OF PARKINSON CARE - LAURIE K MISCHLEY, ND PHD MPH APDA NORTHWEST CHAPTER 2017 OPTIMISM RETREAT - AMERICAN PARKINSON ...
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Laurie K Mischley, ND PhD MPH
The Next Generation APDA Northwest Chapter
of Parkinson Care
2017 Optimism Retreat
1
Disclosures
❖ Advisory Boards: Brian Grant Foundation, Next Frontier Biosciences
❖ Consulting: Synapse Medical Intelligence
❖ Founder: NeurRx, Social Purpose Company
❖ Owner of PRO-PD Outcome Measure www.PROPD.org (free)
❖ Research Funding: Michael J Fox Foundation, Families with PD
(thank you)
❖ Institutional Affiliation: Bastyr University
❖ Practice: Seattle Integrative Medicine
LK Mischley - 27 Aug 2017 2PD Isn’t What it Used to Be
❖ Historically defined by what physician can observe:
❖ Stooped posture
❖ Slowness
❖ Tremor
❖ Impaired balance
❖ Rigidity
3Patient Perspective
❖ Most common symptoms:
❖ Fatigue, Impaired Handwriting, Loss of Smell (80-85%)
❖ Memory Impairment, Muscle Pain, Daytime
Sleepiness, Slowness, Tremor, Sexual Dysfunction,
Balance Impairment, Urinary Dysfunction, Stooped
Posture (70-80%)
❖ Lack of Motivation, Insomnia, Depression, Anxiety,
Impaired Speech (60-70%).
LK Mischley - 27 Aug 2017 4Acknowledging [Lack of] Progression LK Mischley - 27 Aug 2017 5
Quantifying the Burden of Disease ❖ Goal is to shrink the size of the circle. ❖ The ONLY thing that matters is lack of symptom frequency & severity. LK Mischley - 27 Aug 2017 6
Patients in Charge of Data
❖ Tracking their own symptoms, keeping their own
scores, maintaining a record of personal trials.
❖ Patients show me their sleep cycles, show me how
treating their SIBO infection improved their PRO-PD
score.
❖ Demanding integrative medicine, forcing clinical
neurologists to learn about the intestinal microbiome,
metabolism, nutrition, Mucuna, etc.
7We finally have a currency for tracking symptoms & progression
PRO-PD
Free
Patient-centered
Motor & non-motor symptoms
www.PROPD.org
Remote access
Clinically relevant
Permits goal-setting
LK Mischley - 27 Aug 2017 8Why do some people progress quickly and other so little?
“Role of Diet and Supplements
In Search of the on Parkinson’s Disease
Progression”
Positive Deviants Mischley LK, Bennett R, Lau R
Ox Med Cell Long, Sept 2017
LK Mischley - 27 Aug 2017 9Patient-Driven Programs
❖ AA Example: Physicians and researchers have failed
individuals suffering from addiction. Patients have come
together with their own solution. With mechanism of
action unknown, it is more effective than any pill or
procedure their providers are offering. It’s a PROGRAM.
Requires community participation.
❖ Can you skip a step?
❖ Can you go to meetings but not work the steps?
❖ Demonstration of individual efficacy & synergy…
10Programs From Within Community
❖ Rock Steady Boxing
❖ Yoga for PD Plugging into
❖ Cycling Programs
❖ LSVT/ Big & Loud/ Singing at least as
❖ The Parkinson’s Fitness Project Essential as
❖ Pickle ball Pharmaceuticals
❖ Support Groups
11Dale Bredesen, MD
Reversal of
Cognitive Decline
Administered a comprehensive program
to 10 patients with memory loss, mild
cognitive impairment (MCI), and
Alzheimer’s disease (AD).
Followed them for ~ 2 years.
9/10 reversed cognitive loss. Memory
improved. Improved ability to work.
12Bringing Medicines to Market
❖ Trials that get funded are the ones with greatest return on investment.
❖ Takes ~$1 billion to bring a drug to market
❖ Patent protection ensures the company that makes that kind of investment gets that money
back.
❖ Natural products, exercise programs, etc. don’t lend themselves well to patent protection,
deterring investors, and stunting research.
❖ Novel molecules are easiest to patent, bias translates to therapeutic development.
❖ Pharmaceutical Social Purpose Corporations (e.g. NeurRx, SPC)
❖ Legally allowed to put people over profit
❖ Straight to generic
❖ Cooperative model— income generated goes toward saving patients money
13N-of-1 Trials
❖ Represents only the individual, not the population.
❖ What if a drug helps most people but doesn’t help you?
❖ What if you get benefit from an unstudied therapy?
❖ Large, randomized double-blind placebo-controlled trials
can’t answer these questions.
❖ In an n-of-1 trial, the blinded patient is randomized to receive
active medicine or placebo. Individual serves as their own control.
14Out with Placebo
In with Intention
15Pesky Placebo
❖ Placebo is not what we thought.
❖ A biological and clinical phenomenon in which the
body responds in response to community participation,
hope, and/or intention.
❖ Measurable improvement created by factors other than
the intervention being studied. Why does it matter?
16Why Control for Placebo?
❖ If an intervention is
❖ Expensive and dangerous
inexpensive, tolerable, safe,
therapies— in order to justify
and is improving symptoms—
the economic and personal
why does it matter if the
risk, we need to be sure the
benefit is attributable to the
medicine is effective.
intervention being studied?
1718
A Study “Ruined” by Enthusiasm
❖ Phase I/IIa Study of Intranasal
Glutathione in PD
❖ + community enthusiasm
❖ + proof of CNS uptake
❖ + researcher confidence
❖ Phase IIb Study of Intranasal
Glutathione in PD
LK Mischley - 27 Aug 2017 19Parkinsonism is, in part, a
Nutritional Deficiency Syndrome
20Nutritional Deficiencies in Parkinsonism ❖ Glutathione ❖ Coenzyme Q10 ❖ Lithium ❖ Vitamin D ❖ Folic acid… LK Mischley - 27 Aug 2017 21
What Happens When We Look for Metabolic Perturbations?
Using the tools we already
have at our disposal.
Fix What We Can Panel of labs associated with
PD outcomes.
LK Mischley - 27 Aug 2017 22Early Detection is Here
❖ PD can be detected before onset of motor symptoms.
❖ NeurRx, SPC is working on first FDA-approved
screening tool.
LK Mischley - 27 Aug 2017 23Lorem Ipsum Dolor
Early screening
Intense exercise
PREVENTION Community involvement
Nutritional Medicine
Dietary Modification
24Optimism is Justified
❖ Patients taking matters into their own hands.
❖ Finally have a currency for tracking symptoms.
❖ Emergence of efficient, creative study designs provding
the answers we’ve been waiting for.
❖ Social stigmas disappearing as PwP redefine disease.
❖ Growing field of neuroplasticity.
❖ If dementia can be reversed, surely PD can be too….
25Thank You!
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