PD EDUCATION HOUR

Thank you to all who joined us for any of our PD Education Hours, with live viewings and discussions on select topics pertaining to PD.  If you missed any of them, or would like to see a presentation again, you can watch them at the links below.  We have also posted some handouts and articles for your reading pleasure.

DISCLAIMER:  The information provided is for educational purposes only.  Please seek the advice of a medical professional for any questions you may have.

Zoom link to join any upcoming LIVE PD Education Hour:

https://us02web.zoom.us/j/83422548204?pwd=QlM3MnZpSVo3QXNITGFqQzJFa2lDdz09

Meeting ID: 834 2254 8204
Passcode: pep4u

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Please consider supporting our programs with a regular monthly donation

 

Previous PD Education Hour Presentations:

8/5/22:  Breathing with Purpose

7/1/22:  Autonomic Nervous System Dysfunction with PD

6/3/22:  Driving with Parkinson's Disease (PD)

4/1/22:  Accessing the Treatments You Need

3/4/22:  A Look Back and Path Forward

2/18/22:  Occupational Therapist Tips & Tricks to Outsmart PD

2/4/22:  Manage Your Off-Periods

1/21/22:  Improve Your Quality of Life (QoL) With LSVT BIG

1/7/22:  Turbo-Charge Your Exercises With Heart Rate Training

12/10/21:  Parkinson's is Complex -- Yoga Can Help

11/12/21:  Maximize Your Workout Routines

10/29/21:  Home Modifications and Assistive Devices for Living with PD

10/15/21:  Neuropathy, Fatigue, and GI
 

10/1/21:  Back Pain & PD

9/17/21:  In Memory of Tom Kalen -- Dysphagia Review and Exercises

 

9/3/21:  Neuropsych Eval -- What is it and Why Should I Care

8/6/21:  Treating PD Pain with Physical Medicine

7/9/21:  Deep Brain Stimulation

6/25/21:  Living Well With PD - A Conversation Amongst Ourselves

6/11/21:  Freezing Gait and Falls - Activities You Can Do To Prevent Them From Occurring Tomorrow

 

5/28/21:  Pelvic Floor Health - What is It and How It Can Improve My Day

 

5/14/21:  Environmental Factors - Are They to Blame?

 

4/30/21:  My Favorite Type of Exercise - Cognitive

 

4/16/21:  Dysphagia, the Silent Killer, and How to Prevent It

 

3/19/21:  Our Future is in Their Hands

 

3/5/21:  We Fight Better When We Fight Together

 

2/5/21:  Living the Good Life with Parkinson's

 

1/22/21:  Vertigo and Dizziness in Parkinson's

 

1/8/21:  Pain and Parkinson's

 

12/11/20:  Speech Therapy for Parkinson's

 

11/27/20:  Nutrition and Parkinson's Disease

 

11/13/20:  The Science of High-Intensity Exercise and Impact on PD

 

10/30/20:  What, When, Why & How to Treat Dyskinesia

 

10/16/20:  Benefits of Trekking/Walking Poles for PWP

 

10/2/20:  Sleeping Well With Parkinson's Disease

 

9/18/20:  Mindfulness Meditation

 

9/4/20:  Mood Changes -- Anxiety and Depression in PD

 

8/21/20:  Managing the Motor Symptoms in PD

 

8/6/20:  The Parkinson's You Don't See:  Cognitive and Non-Motor Symptoms

 

Session 39 -- 8/5/22:  Breathing with Purpose

Title:  Breathing with Purpose

Sponsor:  IPA Physio, Irvine, CA

Presenter:  Dr. Jessica Workman PT, DPT, CFMT

Duration:  45 mins.

Summary:

Wanna see a heart beating and lungs working?  Wanna see a brain move inside the skull in response to breathing?  Really, it's all here for your curious minds to explore.

Welcome one and all to the 39th installment of the PD Education Hour.  I'm only doing one per month now, so I can be even more discerning in selecting appropriate materials and presenters.  

 

That applies to today's presentation.  I enticed Jessica, a very talented friend who is the planet's best CFMT (Certified Functional Manual Therapy), to speak on a new and exciting topic – breathing with purpose.

 

You will better understand the intricacies involved in breathing and learn techniques to address the scourge of dysphagia, a topic so central to PD that it has garnered two PD Education Hour episodes (see Sessions 16 & 25).

Jessica spent hours compiling information to create her charts that present breathing anatomy, physiology, current research, and applications.

Her presentation includes auxiliary videos further detailing the new look at the science of breathing and an exercise video of yoga breathing techniques you can begin to use today!  She has also compiled reference journal articles she used, so if you want to go deep – there it is.

 

Dig in, dig deep; there's a wealth of information here in all formats, charts, books, and videos.

 

Main Video:

Dr Jessica Workman: 'Breathing with a Purpose'

 

Secondary Videos:

Yoga for Parkinson's Disease: Breathing Exercise (Pranayama) to slow the progression

Video by James Nestor author (2020), Breath: The new science of a lost art.  

5 Ways To Improve Your Breathing with James Nestor

Reference Articles:

  1. Nestor, J. (2020). Breath: The new science of a lost art. Riverhead Books, an imprint of Penguin Random House LLC. 

  2. Purves, D. (2008). Neuroscience. Sinauer. 

  3. Guyton, A. C., & Hall, J. E. (2006). Pocket companion to the textbook of medical physiology. W.B. Saunders. 

  4. Dutton, M. (2012). Dutton's Orthopaedic Examination, Evaluation, and intervention. McGraw Hill. 

  5. Bordoni B, Purgol S, Bizzarri A, et al. (June 01, 2018) The Influence of Breathing on the Central Nervous System. Cureus 10(6): e2724. DOI

  6. 10.7759/cureus.2724

  7. D'Arrigo A, Floro S, Bartesaghi F, et al. Respiratory dysfunction in Parkinson's disease: a narrative review. ERJ Open Res 2020; 6: 00165-2020 [https://doi.org/10.1183/ 23120541.00165-2020].

  8. The Lecturio Medical Concept Library. Lecturio. (2020). Retrieved July 31, 2022, from https://www.lecturio.com/concepts/ 

 

Session 38 -- 7/1/22:  Autonomic Nervous System Dysfunction with PD

Title:  Autonomic Nervous System Dysfunction with PD

Sponsor:  Davis Phinney Foundation for PD

Presenter:  Dr. Norcliffe-Kaufmann, Ph.D. Associate Professor, Department of Neurology & Neuroscience and Physiology NYU Langone Health

Duration:  45 mins.

Summary:

Welcome one and all to the 38th installment of the PD Education Hour.  In only a year, we will be celebrating the Golden Anniversary installment.  Time flies when you’re having fun, right?  So, let’s jump into this fun and informative installment.

 

I always hype these sessions because I love seeking answers to complex questions – an occupational hazard, I guess.  This installment answers questions I’ve posed to dozens of medical professionals.  For me, this presentation addresses questions with no easy or definitive answers.  Still, when you’re desperate to understand a potpourri of symptoms, it only makes sense to attribute them to something as systemic as the ANS.

 

After digesting this informative webinar, you will see your pains and ailments in a new light – it has shot to the top of the charts for me.  I’m sure you will agree – it belongs at the top of your PD resource stack.

0:00 - Introduction

1:50 - What is the autonomic nervous system?

2:55 - Why does the autonomic nervous system get affected in Parkinson’s?

6:22 - The most common autonomic symptoms (constipation, temperature, NoH)

10:20 - Fatigue

12:06 - NoH (Neurogenic Orthostatic Hypotension) Explained

14:25 - How to take and understand your blood pressure at home and in the clinic

18:50 - Body temperature regulation

21:06 - Heart Rate

22:57 - Strategies to Manage Autonomic Symptoms

27:43 - Salt for NoH

33:50 - Sexual Dysfunction in Women

34:55 - The cautions of taking Viagra

36:30 - Connection between pain and the autonomic system

37:15 - Eye-related symptoms

38:48 - Difficulty detecting low light

40:07 - Is high blood pressure related to Parkinson’s?

42:13 - Urinary issues

Webinar Video:

Autonomic Dysfunction and Regulation in Parkinson's

 

 

Session 37 -- 6/3/22:  Driving with Parkinson's Disease (PD)

 

Title:  Driving with Parkinson's Disease (PD)

Sponsor:  PMD Alliance

Presenter:  Dr. Anthony LoGalbo, Ph.D., ABPP-CN, board-certified neuropsychologist

Duration:  45 mins.

Summary:

Welcome one and all to the 37th installment of the PD Education Hour.  It’s been a long time since we met for an informative session on Parkinson’s Disease and the struggles it presents.

As a  reminder, the PD Education Hour will occur at 10:30 AM on the first Friday of the month.  This change allows us to enjoy the early evening walk in the park (Laguna Niguel Regional) every Friday.  We now get to learn something new and reward ourselves with a leisurely social walk.  So let’s get to it discussing a common challenge – driving with PD.

 

This webinar looks at PD symptoms, motor, and non-motor, and describes the hazards and challenges they present.

I’ll be the first to admit I’ve noticed some of these challenges myself.  The good news is that today we can address some of these without losing the independence that driving allows.  Uber is a phone call and a only a few miles away.  In 10 years, we will all benefit from autonomous vehicles – driving while blind as it may be.  

 

So sit back and enjoy this look at driving while challenged and ask yourself what driving habits you can modify to increase your safety while maintaining your independence.

 

I will take exception to one position Dr. LoGalbo takes.  He does not acknowledge the benefits of new technologies standard in late model cars.  I will open a discussion of this topic by mentioning my favorite new safety features, including HUD, rear camera, side camera, collision avoidance, adaptive cruise control, and others.  And please remember, stay away from small cars such as a Mustang – you know whom I’m talking about, right!  Just watch him struggle in the parking lot.

 

Webinar Video:

PMD Alliance:  Driving and the Brain

 

Session 36 -- 4/1/22:  Accessing the Treatments You Need

Title:  Accessing the Treatments You Need

Sponsor:  APDA

Presenter:  Dr. Rebecca Gilbert

Duration:  45 mins.

Summary:

Welcome one and all to the 36th installment of the PD Education Hour.  Since our last session, a lot has happened; chief among those changes is that the PD Education Hour will be presented monthly on the first Friday of every month.

I will continue to host the Friday evening Stroll (aka Walk slowly) in the Park (Laguna Niguel Regional Park).  We are currently starting our Friday social stroll at 5 PM.  The starting time will be adjusted periodically based on season and temperatures.

Today’s PD Education Hour will inform you of all the currently-available treatments and resources, including several you may not know.

  1. Dr. Gilbert (an excellent overview of our shared disease and approaches to reduce symptoms)

    1. A comprehensive review of basic facts about PD

    2. Overview of treatments

      1. Exercise (of course), therapy, DBS

    3. Overview of pharmacological treatments

  2. Annette Kluge (a sales pitch for services provided that will remind  you just how terrific PEP4U is, given all our services are FREE)

    1. Therapeutic care includes Group exercises (boxing, yoga, dance, speech, music)

    2. Social and emotional concerns

  3. Joanne Ruelas (a terrific review of government and non-profit resources)

    1. List and contact information for several PD Foundations

    2. Medicare, Social Security SSI considerations

    3. In-home vs. Out-of-home care

    4. Advanced directives

 

Webinar Video:

APDA Video

 

Session 35 -- 3/4/22:  A Look Back and Path Forward

Title:  A Look Back and Path Forward

Sponsor:  PEP4U

Presenter:  Ernie et. al.

Duration:  60 mins.

Summary:

Welcome one and all to the 35th installment of the PD Education Hour.  A lot has happened since our first session, Aug 2020.  Some good, some bad, and a whole lot of stasis.  Is that a sign of steadiness or an indication of unwanted inertia?  Or is it a bit of both?

Let’s look back to the beginning and then forward to the future.  I’m confident we will accomplish a lot with this retrospect and visionary look ahead.

 

We have some of the PEP4U founders in our midst.  I will ask that each give us their view of the past and forecast for the future.  We owe these folks so much that it seems unfair to limit them to five minutes, but – we have much ground to cover.  So, here we go, “What have we accomplished (a lot) and What is in our future (a lot more)”?

 

After that fun exercise, I will review a few of the most important topics we’ve covered over the last 18 months.  Finally, I want to establish how much information I and others have collected, read, and categorized.  This info is invaluable.  Pick a topic, any topic.  You will find helpful information.  Please partake and enjoy the library we’ve created.

 

Agenda

•  My thoughts on the impact of PEP4U     (5 min)

•  A look back & plans ahead                      (20 min)

•  Jackie, Ernie #1, Tricia, Aimee

•  A review of PD Education Hour               (15 min)

  • Highlights & Recommendations

•  Website Resources                                    (5 min)

•  Open Discussion                                       (15 min)

  • What has PEP4U done for you

  • Where would you like to see PEP4U move

 

 

Session 35: 2022-03-04

A Look Back & Path Forward

 

Session 34: 2022-02-18

Tips & Tricks to Outsmart PD

Session 33: 2022-02-04

Manage Your Off-Periods

 

Session 32: 2022-01-21

LSVT Global

Session 31: 2022-01-07

Heart Rate Training

2021-12-24

Holiday Break

Session 30: 2021-12-10

Yoga Can Help

2021-11-26

Holiday Break

 

Session 29: 2021-11-12

Maximize Your Workout Routines

Session 28: 2021-10-29

Assistive Devices for PD

Session 27: 2021-10-15

Neuropathy, Fatigue, and GI

Session 26: 2021-10-01

Back pain & PD

Session 25: 2021-09-17

RIP Tom Kalen - Dysphagia

Session 24: 2021-09-03

Neuropsych profile: What is it, and why should I care

Session 23: 2021-08-06

Treating PD Pain with Physical Medicine

 

Session 22: 2021-07-09

Deep Brain Simulation – Are you a candidate

Session 21: 2021-06-25

Living Well with PD – A Conversation Amongst Ourselves

Session 20: 2021-06-11

Freezing Gait and Falls – activities you can do today to prevent them

Session 19: 2021-05-28

Pelvic Floor Health – What is it, and how can it improve my day

 

Session 18: 2021-05-14

Environmental Factors

Session 17: 2021-04-30

My Favorite Exercises – Cognitive

Session 16: 2021-04-16

Dysphagia, the silent killer, and how to prevent it

Session 15: 2021-03-19

Our future is in their hands – Chapman University PA students

Session 14: 2021-03-05

We fight better when we fight together – Lauren Simmons, PD Buzz

Session 13: 2021-02-05

Living the Good Life with PD

Session 12: 2021-01-22

Vertigo & Dizzyness in PD

Session 11: 2021-01-08

Pain and Parkinson’s

 

Session 10: 2020-12-11

Speech Therapy

Session 9: 2020-11-27

Nutrition for PD

Session 8: 2020-11-13

High-Intensity Interval Training for PD

Session 7: 2020-10-30

Dealing with Dyskinesia

Session 6: 2020-10-16

Benefits of Trekking/Walking Poles for PWP

Session 5: 2020-10-02

Sleeping Well With Parkinson’s Disease

Session 4: 2020-09-18

Mindful Meditation (MM)

 

Session 3: 2020-09-04

Mood Changes – Anxiety & Depression in PD

Session 2: 2020-08-21

Managing the Motor Symptoms in PD

Session 1: 2020-08-07

The Parkinson’s You Don’t See: Cognitive and non-motor symptoms

Recording of this webinar:

A Look Back and Path Forward

 

Session 34 -- 2/18/22:  Occupational Therapist Tips & Tricks to Outsmart PD

Title:  Occupational Therapist Tips & Tricks to Outsmart PD

Sponsor:  APDA

Presenter:  Dr. Foster

Duration:  45 mins.

Summary:

Welcome one and all to the 34th installment of the PD Education Hour.  This session will teach us everyday techniques that will make coping with our debilitating disease just a bit easier.  And don’t we deserve a little help? The answer – of course, we do.  These techniques are the final layer of the complete PD care quilt.  They will improve your Quality of Life, and you won’t even break a sweat or set a timer.

Dr. Foster starts with a review of specialized products that make computer tasks much more manageable. Large keyboard keys are first but not last approach.  There are other not-so-obvious solutions for mouse work.  I’m using the SteadyMouse software plug-in as I type.  Without this aid I would spend hours each day trying to navigate using the mouse.  If you’re online anywhere near as often as I, you should try this out.

Dr. Foster tackles one of my most significant issues – writing.  I never had good penmanship, but today, with this scourge, I can’t write anything in any legible format.  How often have I tried to fill out a stack of insurance forms at a doctor’s office?  Too many to count, and it’s not fun asking for help.

 

Suppose you’re a foodie (I know what the term implies but, that’s about it).  In that case, some techniques will facilitate you in your obsession to play with your ingredients before masticating them into an unrecognizable bolus of “food.”  Did I get the foodie concept right?  It depends on whom you ask, I’m sure.

By the way, those fancy terms – masticting and bolus – come straight from PD Ed Hour Session 16: 2021-04-16 Dysphagia, the silent killer, and how to prevent it.  I consider this the most important session of all, to date.  Please watch it – let’s not lose another friend like we lost Tom Kalen.  Dysphagia leads to pneumonia which is the most prevalent cause of death for us.  Both are preventable.  Watch the seminar – save a life.

 

To end her presentation, Dr. Foster tackles far-ranging questions from the crowd.  She covers driving privileges, recovering from a fall, wardrobe items that are easy to navigate, zipper issues, ingress and egress from your limo (don’t buy a small Mustang), etc. etc.

Don’t forget to visit the PD Education Hour page on the PEP4U website.  You will find a bevy of helpful information, including session 16, focused on education and tactics like those presented today.

Webinar Video:

American Parkinson Disease Association Presentation

YouTube Links:

Dysphagia, Animation

Swallow Exercise for Dysphagia

Swallowing Problems in Parkinson's Disease

Resources:

 

Session 33 -- 2/4/22:  Manage Your Off-Periods

Title:  Manage Your Off-Periods

Sponsor:  Davis Phinney Foundation

Presenter:  Dr. Yasar Torres-Vaghi

Duration:  55 mins.

Summary:

Welcome one and all to the 33rd installment of the PD Education Hour.  Lately, it has been a challenge to find a new topic for each session.  So, as I often do, I went to my friends at PEP4U. Of course, the talented therapists and trainers at PEP4U stepped up and helped out.  We’ve had a session on Yoga, courtesy of Cynthia, our ever-inquisitive yoga trainer.  Then we were treated to a session on LSVT Big by a founding member of PEP4U, Dr. Patricia Brown.

So how do I follow that dynamic duo?  That was my challenge for this session, and, once again, the broader PD community came through.

 

This week’s episode is courtesy of the Davis Phinney Foundation.  The foundation is a great learning forum that has provided material for several episodes of PD Education Hour.  This time, they provide a thorough review of a topic that, in hindsight, I wonder how I had missed.

 

Off-periods are those times when your medications aren’t at their peak dose.  Think of how you feel early (every) morning just before your meds have “kicked in.”  Your tremors, rigidity, stiffness, etc., are all presenting problems.  I have painful dystonia (aka cramps) in my toes every AM – very strange indeed.  PD pharmaceuticals (Sinemet, Requip, etc.) are the primary means for motor-muscular symptom relief.  Off-periods are the bane of these drugs.

 

This webinar presents the most effective tactics to manage off periods.  We will better understand the pathology and discover a host of other strategies to reduce off-time and mitigate its impact significantly. 

Don’t forget to visit the PD Education Hour page on the PEP4U website.  I have compiled several reference materials on this topic that add a deeper understanding of the pathology of off-times and tactics available to counter the effects.

Webinar Video:

OFF Time in Parkinson's: (Your Top 20 Questions Answered)

 

Resources:

 

Session 32 -- 1/21/22:  Improve Your Quality of Life (QoL) With LSVT BIG

Title:  Improve Your Quality of Life (QoL) With LSVT BIG

Sponsor:  PEP4U

Presenter:  Dr. Patricia Brown PT, DPT, NCS

Duration:  45 mins. + Q&A

Summary:

I am happy to report that we have the crème de la crème presenting for the 32nd edition of the PD Education Hour.  Our very own Dr. Patricia Brown (aka Tricia) will review LSVT BIG exercise program details.

If you weren't aware, Tricia has supported PEP4U from its inception, some 8+ years ago.  She continues to be a vital member of the PEP4U team in so many varied ways.  

 

Dr. Brown is an Associate Professor at Chapman University, teaching in the Doctor of Physical Therapy program.  She has a passion for and many years of experience working with people like you and me that suffer the scourge we call Parkinson's disease.

 

LSVT BIG is an exercise and activity approach that capitalizes on normalizing movement and addressing sensory challenges associated with PD.  This approach will enhance your QoL by improving and facilitating your daily movements.  These time-tested exercise principles will slow the progression of Parkinson's disease.

Tricia is a certified LSVT BIG clinician (despite her diminutive size) and a faculty trainer for LSVT Global.  As such, she teaches LSVT BIG to physical and occupational therapists that guide you and me through

the high amplitude motions to help stave off the movement challenges associated with PD.

Listen carefully to Tricia.  She will present information loaded with material and details to improve your QoLife and slow down the inevitable regression.  A pill that could do that would be a real boon to us Parkies and Big Pharma (not that they need another boon).

 

Video Link:

LSVT BIG with Dr. Patricia Brown, PT, DPT

 

Resources:

 

Session 31 -- 1/7/22:  Turbo-Charge Your Exercises With Heart Rate Training

Title:  Turbo-Charge Your Exercises With Heart Rate Training

Sponsor:  PEP4U

Presenter:  Ernie #2

Duration:  60 mins.

Summary:

How would you like to turbo-charge your exercise sessions and get a visual reward for your efforts?  Heart Rate Training does that – you exercise much more efficiently, gain a more significant improvement in QoL (Quality of Life), and when it’s over, you’ll have a badge of honor to tout to family & friends.

 

Here’s a record of my heart rate (bpm - beats per minute) during this week’s spin cycle class. I’ll show you more details on Friday but suffice it to say – watching your heartbeat rise and fall during exercise is very rewarding.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

For those like me that measure everything (occupational hazard shared by all ex-scientists and engineers), watching your heart rate rise above the minimum threshold and then keeping it within a prescribed window is very motivational.

You are taking advantage of thousands of hours of research on heart rate training.  We now know what level of exertion, as monitored by our heart rate, is best for weight loss or cardio performance.  You’ve turbo-charged your workouts, and you receive an award for each session.

There is so much analysis you can derive from this data – sorry, there I go again.  I’ll wait until Friday to obsess over the analysis results.

 

You don’t want to miss that, right.

P.S.  Dress comfortably – something tells me we’re going to move a bit.

Webinar Video:

Turbocharge your Exercise Routine

 

Video Links:

Why Do Heart Rate Zones Matter? | Running To Heart Rate Explained

Understanding & Calculating Your Heart Rate Zones 101

 

Beginner Cardio Workout At Home For Seniors | 20Min

 

Is HIIT (High Intensity Interval Training) OK for heart patients?

 

Low impact, high intensity cardio workout (for seniors and ALL starters)

Resources:

Target Heart Rate Calculator

HeartRate_Picture.png
R1 Heart Rate Zone Calcs.png
 

Session 30 -- 12/10/21:  Parkinson's is Complex -- Yoga Can Help

Title:  Parkinson's is Complex -- Yoga Can Help

Sponsor:  PEP4U

Presenter:  Cynthia Price E-RYT

Duration:  60 mins.

Summary:

We have an exceptional presenter for our 30th session of PD Education Hour.  Our very own Cynthia Price, yoga instructor extraordinaire, will comprehensively cover how yoga can help mediate the symptoms associated with PD.

Cynthia has been a yoga instructor for over two decades (the exact period is classified).  She was introduced to yoga at an early age by her mother, the town instructor in Highland Park, New Jersey (this helps explain her accent).

Cynthia is thrilled to report that the well-established scientific process has finally proven that yoga mitigates motor muscular symptoms associated with PD.

Cynthia has finally uncovered scientific proof that yoga conclusively improves PD symptoms.

Video Link:

Yoga for PD with Cynthia Price

 

Session 29 -- 11/12/21:  Maximize Your Workout Routines

Title:  Maximize Your Workout Routines

Sponsor:  PEP4U

Summary:

This webinar will define “high-intensity” and guide you on a “Delay the Disease journey”.  We may not have a cure.  Still, we recognize exercise will delay the progression to improve our Quality of Life (QoL). 

 

You’ve all heard Gabi talk about exertion.  Well, some smart people like her put together this chart defining the rate of exertion.  Your target is a 7 (Vigorous) or 8 (Hard) on a perfect day.  It’s not easy to hit 8, even 7 takes a concerted effort, but the benefit improvements are exponential.

 

Here’s the outline for this webinar:

15:15 What does forced exercise mean

16:31 Neuroprotective Research Study

17:51 Exercise Promotes Neuroplasticity

19:18 How the Brain Rewires for Change

20:52 Positive Effects of Exercise on the Human Brain

21:35 The Neuro Cycle

29:30 Science Behind Rock Steady Boxing

38:14 Science Behind Delay the Disease

 

The Delay the Disease program has an excellent resource book/binder with exercise instructions and diagrams.  I will include a link to the book and their website; there’s something there for everyone.

 

 

Webinar Videos:

How to exercise to get results from Parkinson’s Exercise Programs

Zoom link to the webinar

Delay the Disease website:

Neuroscience Delay the Disease Home

 

Delay the Disease book:

Delay the Disease-Exercise and Parkinson's Disease 2nd Edition

ExertionPicture.png
 

Session 28 -- 10/29/21:  Home Modifications and Assistive Devices for Living with PD

Title:  Home Modifications and Assistive Devices for Living with PD

Sponsor:  Mission Medicine, University of Michigan

Presenter:  Pamela Van BuSren OTR/L

Duration:  35 mins.

Summary:

We all work very hard to address the many motor symptoms that bedevil us 24-7-365.  Some of us (myself included on a good day) will spend two or more hours per day doing exercise to mitigate the symptoms.

But, some of us (or at least me) continue to ignore the reality – we can’t do things as well as in our youth. Therefore, we shouldn’t participate in risky activities.  Bicycling comes to mind for some reason (and my broken shoulder flares up whenever bikes are mentioned (ouch)).

So why don’t we mitigate the risk of injury while continuing our symptom mitigation (aka exercise) routines?  Why don’t we modify our living spaces to improve our ambulation and navigation?  We will review home modifications and handy aids that can dramatically increase our quality of living (QOL).

 

We will review fall prevention (falls are the most common cause of hospitalization) and mitigation steps for other daily risks.

 

I see how aggravating it can be to get in and out of a car. Indeed there is an inexpensive gadget to assist ingress and egress from vehicles (yes, egress is a real word).  Another less obvious example is the software routine running in the background that evens out my shaky webpage navigation.  It is appropriately named “SteadyMouse,” and it is free.

So these are just a few of the innovative approaches and gadgets that can make old folks with motor-muscular problems look like,…, well, maybe just old folks sans the motor problems.  That will improve my QOL – so dig in and explore the options available for you.

 

 

Video Link:

Parkinson's Disease Home Modification & Equipment

 

 

Resources:

New Technology Could Allow You or Your Parents to Age at Home

Senior Care Products

12 "Must Have" Products For Elderly Living Alone 2022

 

Session 27 -- 10/15/21:  Neuropathy, Fatigue, and GI

Title:  Neuropathy, Fatigue, and GI

Sponsor:  Parkinson's Foundation

Presenter:  Ellen Walter, APRN-CNP; Steven Swank, PharmD, BCACP

Duration:  55 mins.

Summary:

We're all aware of the motor-muscular symptoms (aka pain points) associated with PD, including, but not limited to, bradykinesia, tremors, stiffness, freezing, dyskinesia, and falls/instability. But, as if those aren't enough, we're blessed with many PD-induced non-motor issues.

For many of us, myself included, non-motor issues are as disabling as motor issues. Not all non-motor problems are related to PD, but why not blame PD anyhow. "I can't stop talking because I have PD." That's my story, and I'm sticking to it.

Anyhow, I digress. This webinar will review three non-motor symptoms that are most often a direct consequence of PD, neuropathy, fatigue, and gastrointestinal issues. The experts discuss how the ambiguous topics of fatigue, neuropathy, and gastrointestinal problems may relate to PD, medications, or aging. Personally, I find it best to blame everything on PD – there's more sympathy for that.

 

Most important to us is the presentation of evidence-based treatments for these non-motor symptoms, treatments that we can employ in our never-ending battle with the PD monster. This presentation is slightly longer than usual but, stick with it, and you will obtain more ammunition for your brave and unending fight in the war against PD.

Video link:

Exploring Non-Motor Parkinson's Disease Symptoms: Neuropathy, Fatigue and GI Issues

 

Session 26 -- 10/1/21:  Back Pain and PD

Title:  Back Pain & PD

Sponsor:  APDA

Presenter:  Tim Nordahl, PT, DPT, APDA Rehab Resource Center

Duration:  33 mins.  + discussion

Summary:

Tim Nordahl is a DPT contributing to Let's Keep Moving, a webinar series from the APDA Rehab Resource Center at Boston University.  These webinars provide tips, research, and news on staying active and exercising as part of a PD regime.

 

In this webinar, Dr. Nordahl will answer questions such as:

  1. What exercises do you recommend to build core strength to protect my back?

  2. What activities should I avoid when I have back pain?

  3. How do I achieve an optimal gait pattern while managing my back pain?

  4. What are the best approaches to improve my posture? (this is a significant goal of mine)

  5. What should I do when walking becomes a problem due to stiffness and pain? (when are stiffness and pain NOT a problem?)

  6. What stretches do you recommend before activities that involve trunk rotation – like kayaking in Dana Point harbor tomorrow?

 

Pay close attention to the rotation warm-up strategy.  I'm certain Gabi and Trish will be utilizing these techniques tomorrow at Dana Point as we warm up for a leisurely kayak adventure.  I look forward to seeing everyone at the Harbor.  Call me @ 714-322-5133 with any questions.  Rest assured, you can kayak, and you will enjoy the freedom of motion that you haven't felt in years.

Video link:

Let's Keep Moving: Back Pain and PD with Tim Nordahl, PT, DPT | APDA

Resources:

https://www.healthline.com/health/fitness-exercise/yoga-for-back-pain

 

Session 25 -- 9/17/21:  In Memory of Tom Kalen -- Dysphagia Review and Exercises

Sponsor:  PMD Alliance

Presenter:  Heather Hodges, MA, CCC-SLP & Eugene Speech Therapy

Duration:  50+ mins.

Summary:

Tom Kalen was a dear friend to me and many other PEP4U participants.  I was devastated to hear of his passing.  He was a regular at the YMCA before Covid-19.  He left for North Carolina a few months ago to spend what ended up becoming his final days with his family.  For that, I am very thankful.

TomKalen.png

The tragedy is that Tom's demise was in no small part due to dysphagia, a PD symptom that we can beat.

We talked about dysphagia several months ago but, given the importance of this, I thought we should revisit it with a new set of exercise ideas and a look at the causes and deadly impact of dysphagia.

 

Dysphagia is difficulty or discomfort in swallowing as a symptom of a disease.

 

Today's PMD video states that 80% of PWP have some degree of dysphagia as a motor symptom.  Dysphagia leads to asperation; asperation leads to pneumonia, and pneumonia can lead to death.

 

I've read that 70% of people with Parkinson's (PWP) die from pneumonia.  Dysphagia is a leading cause of pneumonia.

 

That means that far too many people we all care dearly for are at risk of pneumonia.

 

We can mitigate this risk.  There are several approaches; we will review some of them.  My goal is to make everyone aware of the risk, present some exercises that we can use to confront this insidious disease, and improve our quality of life in the process.

 

The PD Education Hour page has several other resources to help mitigate this risk.  They include a Dysphagia Handicap Index, an assessment of life expectancy with PD, and a well-written short piece on dysphagia from the MJ Fox Foundation.

Please, for everyone's well-being, review this material and decide how you will beat this and improve your quality of life in the process.

 

Video link:

Swallowing Issues in PD - Spotlight® Online - September 14, 2021

Resources:

 

Session 24 -- 9/3/21:  Neuropsych Eval -- What is it and Why Should I Care

Sponsor:  Parkinson’s Foundation

Presenter:  Travis Turner, Ph.D. Neuropsychologist, Medical University of South Carolina

Duration:  50+ mins.

Summary:

In the last session, we heard from a Physiatrist; today, we listen to a Neuropsychologist.  Try spelling either of those without a mistake.  I dare you.

Neither of these specialties comes to mind for those of us with Parkinson’s, but, as we found out last month and we’ll find out today, both can be critical members of your PD support team.

As we’ve all learned the hard way, PD is more than a movement disorder.  PwP often experience changes in cognition, mood, emotion, perception, attention, sleep, memory, motivation, and anything else that ails them (if it hurts, blame it on PD). Problems with any of these can make it difficult to control motor symptoms.

A neuropsychologist tests the PwP to evaluate their mental abilities and psychological state.  And when I say test, I’m talking real tests.  I recently enjoyed the torturous ordeal, which lasted over three hours, not including an hour-long interview with Rebecca.  She did great, me, not so good (JK).  I’ll have more on this, including example tests (remember the SAT example tests) to show you after the webinar.

It may be helpful to have a neuropsychological evaluation early in the disease to establish a baseline so your neurologist can determine if changes in cognition are related to medications, progression of the PD itself, or other factors such as depression.  In this episode, Dr. Travis Turner discusses the role of the neuropsychologist and the evaluation process.

Video link:

Parkinson's Disease Thinking Changes: Engaging Neuropsychology

Additional Resources:

 

Session 23 -- 8/6/21:  Treating PD Pain with Physical Medicine

Sponsor:  Parkinson's Foundation

Presenter:  Meaghan Lynch, MD, Physiatrist, Kaiser Permanente

Duration:  45 minutes

Summary:

Guest speaker Meaghan Lynch, MD, Physiatrist, Kaiser Permanente, discusses physiatry and its role in Parkinson's disease.  Dr. Lynch discusses how physiatrists help with neurorehabilitation, pain management, physical and occupational therapy support, and comprehensive care.

This webinar presents several pain management options I had never heard of before, such as desensitization techniques (say that three times in a row).

She shows and discusses the benefits of using assistive devices that appear very handy (bed rail, transfer pole).

She demonstrates how to find the best position for sleeping.  This webinar is chock full of valuable tips to improve our quality of life by reducing and mitigating pain.  You can't go wrong with that.

 

Video link(s):

Using Physical Medicine to Reduce Parkinson's Disease Pain

 

Session 22 -- 7/9/21:  Deep Brain Stimulation

Sponsor:  University of Michigan, Medical Center Foundation

 

Presenter:  Dr. Emily Levin

 

Duration:  28 minutes

Summary:

As the hours inexorably tick by, we have reached Session 22.  And as days become weeks and weeks become months, our progressive disease marches on, making life just a bit more challenging.  Is there a cure, no, not in the short term?  Is there something we can do to improve our Quality of Life (QoL)? Absolutely.

Exercise, exercise, exercise.  You knew that was coming, right?

But alas, there is a procedure that, in combination with exercise, will increase the QoL for many of us.  It’s called Deep Brain Stimulation (DBS), and yes, it is as foreboding as it sounds.

 

After the brain surgery (yes, as I said, foreboding), your noggin’ receives electrical stimulation to help ward off some, but not all, of the symptoms that we find so detrimental to our QoL. Multiple PEP4U participants can attest to the efficacy of this procedure.  I must let those that want to share their experience speak for themselves.

 

Unfortunately, not everyone with PD is a good candidate.  Careful screening includes a battery of tests, including a 4+ hour neuropsychological exam, to assess the likelihood of success.  This seminar will help you understand what a good candidate “looks” like (maybe me??), and what the surgery entails, and what outcome(s) you can expect.

 

This webinar is another well-produced presentation from the good folks at the University of Michigan. Enjoy and then consider – Is this right for me?

 

Check out the other Resources on our website that address DBS, including an exceptionally well-written piece from John Hopkins Institute.  Just go to our PD Education Hour page.  I’ve included a link to a video showing details of the surgery.  It’s not for the squeamish. 

 

While you’re there, check out earlier sessions and their related resource materials.

Video link(s):

Deep Brain Stimulation (DBS) for Parkinson's Disease: Dr. Emily Levin

Deep Brain Stimulation Surgery to treat Parkinson's Disease at Mount Sinai Hospital

Additional Resources:

 

Go to the PD Education Hour and check out the additional resources for this session, including this terrific piece from John Hopkins.

 

Session 21 -- 6/25/21:  Living Well With PD - A Conversation Amongst Ourselves

Sponsor:  Davis Phinney Foundation

 

Presenter:  Dr. Sonia Mathur, Davis  Phinney, Brian Grant

 

Duration:  55 mins.

 

Summary:

 

Well, we made it to session #21.  Thanks for your continued support.  Let’s resume our journey to understand this sinister disease better.

 

Today we will listen in on a conversation between Davis Phinney and Brian Grant, two ex-athletes diagnosed at an early age.  If you’re not familiar with the Davis Phinney website, you need to correct that.  I’ve included links to the encyclopedic Every Victory Counts – a terrific reference source provided free (incl shipping) by the Foundation.  You need this resource at your ready.

 

Brian Grant had a memorable 12-year career in the NBA.  I remember him as an All-Star with the Portland Trail Blazers.  In 2008, at age 36, Brian was diagnosed with Parkinson’s. 

 

Davis Phinney was an Olympic Bronze medalist and Tour de France stage winner who claimed the most victories of any cyclist in American history.  In 2000, at age 40, Davis was diagnosed with Parkinson’s.

 

Since being diagnosed, both athletes have made it their mission to do all they can to thrive with Parkinson’s and inspire others to do the same.

 

In this genuine, inspiring, and relatable conversation, Brian and Davis talk about their experiences receiving a Parkinson’s diagnosis.  They discuss difficulties in accepting the physical and mental challenges that have occurred with the progression of their Parkinson’s, and how and why they are passionate about living well with Parkinson’s every day.  Here is one of many terrific takeaways:

 

Davis: “I still ebb and flow with acceptance, but that doesn’t mean that I can’t focus on living well and doing my best, making my best effort to enjoy my life.”

 

A man of so many accomplishments fighting the good fight for 21 years still has acceptance issues.  You’re here today dealing with it so, continue fighting the good fight and let others inspire you to Live Well every day

Video(s) link:

Living Well with Parkinson’s- A Conversation with Brian Grant and Davis Phinney – YouTube

ViewFinder - Living With Parkinson’s - Brian Grant Interview - Season 19 - Episode 7 - PBS

Additional Resources:

Go to the PD Education Hour and check out the additional resources for this session.  They include links to the must-have Every Victory Counts reference book and a link to a short one-on-one conversation with Brian Grant.

 

Session 20 -- 6/11/21:  Freezing Gait and Falls - Activities You Can Do To Prevent Them From Occurring Tomorrow

Sponsor:  Parkinson’s Foundation

Presenter:  Dr. Fay Horak, Professor of Neurology Oregon Health and Science University

Duration:  40 mins.

Summary:

Well, we made it to session #20.  Thanks for your continued support.  Let’s continue our journey of understanding this insidious disease that holds sway over (pun intended) so many factors in our lives.  The more we know, the better we fight.  Today we fight against “freezing” and “PD-induced falls.”

But first, it’s time for a quick pre-webinar quiz.  As stated in the presentation, “The only intervention that significantly reduces the risk of falling is …….”  Surely you know the answer.  Exercise!!!  If you didn‘t see that coming, you haven’t been paying attention.  I dare say if big Pharma could pack all the benefits of exercise into a pill, that pill would be more popular than Viagara.

 

Today’s webinar covers the physiology of the brain that leads to PD freezing episodes.  Who knew the brain could stop you dead in your tracks.  Well, it can and does very often do just that – causing you to freeze in place.

 

Once we learn the neurologic disorder mechanisms, we will delve into the types of balance problems that cause us to freeze and/or fall.

 

But, we are not helpless.  Dr. Horak will propose many activities (let’s call them activities instead of exercise) to fend off the inevitable and disabling freezing and falling episodes.  These are exercises, I mean activities, we’ve been doing routinely as part of Parkinson’s Activity Program 4U.  They include cueing, dance, tai chi, shadowboxing, PWR moves, etc.  All those fantastic exercises, oops, activities will help us win the fight against freezing and falls.

 

We will finish with a short video from Bob & Brad (“the most famous PTs on the web”) showing tricks to address freezing.  They have over 3 million subscribers, so they must be doing something right.

 

Video(s) link:

Freezing or Sweating Falls When Walking with Parkinson's Disease: Finding Balance & Freezing of Gait

How to Help Parkinson's Freezing Episodes: 3 Great Tips

Additional Resources:

Go to the PD Education Hour and check out the additional resources for this session.  They include excellent material from Davis Phinney Foundation and the APDA.

 

Session 19 -- 5/28/21:  Pelvic Floor Health - What Is It and How Can It Improve My Day

 

Sponsor:  Udall Center of Excellence for PD Research – University of Michigan Health System

Presenter(s):  Dr. Anne Pelletier-Cameron M.D.

 

Duration:  40 mins + Q&A (optional)

 

Summary:

Wow, this is the 19th PD Education Hour.  It all started last August during the pandemic.  I had nothing better to do, and I enjoy researching and writing so, what the heck.  I figured we should all get together and learn everything we can.

 

Through education, we are better able to control our symptoms and outlook.  Who amongst us can’t handle an incurable, progressive, neuromuscular brain disorder?  Go ahead, throw in some tinnitus and Crohn’s Disease.  The more I know, the more powerful I am.

 

I want to say thanks to everyone that has joined me on this mission to better understand our common malady.  As you all know, there are so many consequences we could never cover them all.  But, here’s to trying.

 

In this session, we’re going to hear about a topic no one wants to discuss.  I won’t be taking any surveys, so rest assured your confidentiality will be maintained.

In this webinar, Dr. Anne Pelletier-Cameron, M.D. reviews how the bladder functions, common bladder-related symptoms in Parkinson’s disease, and options for diagnosing and treating bladder conditions in people with PD.

 

The clever session title, Pelvic Floor Health, came from a leading PEP4U activist and medical professional, our own Gabi.  Most participants are unaware of how much effort behind the scenes she puts into PEP4U.  She’s going to teach us a simple exercise or two after the webinar which might help maintain your pelvic floor health.

 

PS  Check out the following additional resources for this session.  They include some sample exercises (Say it ain’t so Joe The Hollies (1979) – not more exercises!) along with a complimentary review by the MJ Fox Foundation.

 

Video link:

Parkinson's Disease and the Bladder

Additional Resources:

Pelvic Floor Muscle Movement with Breath

Top 5 Pelvic Floor Exercises

 

Session 18 -- 5/14/21:  Environmental Factors - Are They to Blame?

Sponsor:  MJ Fox Foundation

Presenter(s):  Panel of Experts

Duration:  50 mins + Q&A (optional)

Summary:

Do you often wonder, why me?  What did I do, or who did I “pi__” off.  What are my three strikes to deserve this life sentence?

You may wonder if your case has a genetic component.  Or was it caused by a toxic environment?  Did you suffer some traumatic injury or repeated brain bashing (Mohammed Ali style)?  Maybe, like me, you can blame multiple factors.

Well, lucky me, my “perfect storm” included all three elements.  First, I suffered significant “Brain Damage” (Pink Floyd song) “…. back in 1963” (ZZ Top lyric) in a car crash.  Second, my maternal grandmother suffered from PD.  And finally, I was poisoned by President Nixon when he sprayed Mexican marijuana crops with paraquat.  How’s that for a triumvirate leading me to my “three strikes and your out” sentence.

What was it for you?  This session of PD Education Hour will present studies into how factors such as pesticide and toxicant exposure and head injury can lead to Parkinson’s.  We also cover policies and legislation that may help limit those exposures and protect people from disease.

So, no discussion of my relatives but indeed a relevant discussion of the two most likely causes of PD.  Which of these is your story?  Join us this Friday and find out.

Video Link:

“Environment’s Role in Parkinson’s Disease” August 2020

Additional Resources:

 

Session 17 -- 4/30/21:  My Favorite Type of Exercise - Cognitive

Sponsor:  PEP4U

Presenter(s):  Allyson Lehrich, Cognitive Care Solutions

Duration:  50 mins + Q&A (optional)

Summary:

Do you ever have trouble expressing your thoughts or opinions?  I know you are surprised to hear that I have that problem regularly.  I can’t quite decide on the best way or perfect words to communicate my thoughts.  If I were to tell you that this is a common non-motor symptom of Parkinson’s Disease, would you believe me?  Of course, you would; it’s likely just one more component in your own formulation of PD.

I invited our special guest Allyson Lehrich to help us cope with common cognitive issues.  Some are geriatric; others are likely PD-related.  These include memory loss, reasoning, processing speed, concentration, and a host of other cognitive issues.  Allyson is president of Cognitive Care Solutions here in OC.  She is a licensed clinical social worker who has spent more than two decades assisting seniors and their families.  Allyson excels at identifying the clinical aspects of senior cognitive states.

Allyson teaches the benefits of exercising (can’t get away from exercise, ever) our brains in a fun and educational class.  She will focus on the issues already listed.  The exercises are fun (think of Wheel of Fortune) and will, I guarantee, challenge you cognitively.

Are you up for the challenge?  I hope so.  Join this session of PD Education Hour on Friday the 30th at 10:30 AM PDT.  And don’t forget to checkout the additional resources listed below.

 

I’ve included a link to the Cognitive Care Solutions website.  They can be reached at 714.545.3390.  Check out Allyson’s free weekly brain exercise classes, currently held online.  Several PEP4U participants have already enjoyed the classes.  Just send Allyson a note at allysonl@cognitivecaresolutions.com.
 

PS:  No sweats or yoga mats are needed for this session of PEP4U Education Hour

Video Link:

https://us02web.zoom.us/rec/share/a4YCnOtIvNMvuJZy8_8smQ2qOe8J5ymH1e9xxQgWfERSYSv-2IeKAm6fQmtGYJNR.Jfn3IpYPhgkasl0R?startTime=1619803584000

Additional Resources:

Cognitive Care Solutions:

https://cognitivecaresolutions.com/

AARP - Staying Sharp / Brain Games:

https://www.aarp.org/search/?q=free%20staying%20sharp%20brain%20games&c=everywhere

Book - Keep Your Brain Alive Exercises:

https://www.amazon.com/Keep-Your-Brain-Alive-Exercises/dp/0761110526

Book - Keep Sharp / Build a Better Brain:

https://www.amazon.com/Keep-Sharp-Build-Better-Brain/dp/1501166735/ref=sr_1_3?crid=1M9CNTBW1PDLV&dchild=1&keywords=sanjay+gupta+keep+sharp+book&qid=1620499512&s=books&sprefix=sanjay+gupta%2Cstripbooks%2C216&sr=1-3

 

Session 16 -- 4/16/21:  Dysphagia, the Silent Killer, and How to Prevent It

Sponsor:  9th Annual Parkinson’s Disease Patient and Caregiver Conference

Presenter(s):  Missouri University - Health Care University Hospital

Duration:  40 mins

Summary:

 

This week’s topic could literally save your life.  Learn how dysphagia leads to the #1 cause of death for us people with Parkinson’s (PwPs) – aspirational pneumonia (AP).

AP occurs when food, saliva, or liquid is breathed into the lungs instead of being swallowed.  AP leads to infections of the lung – an often-fatal condition.

 

After watching this webinar, you will understand how dangerous this condition is for PwPs.

 

Are you at risk of dysphagia?  Have a cup of water and a pretzel at hand to test your risk.  A simple drink and chew experiment will serve as a self-awareness test. 

 

What’s the best prevention approach?  Hold for it …..exercise.  You knew that was coming, right?  This presentation includes simple mouth exercises that will reduce the risk of dysphagia and minimize or eliminate the common PD-triggered drooling.

 

Don’t forget to have a glass of water and hard bread (pretzel, cracker) available for the self-test.

 

PEP4U Video Link:

https://us02web.zoom.us/rec/share/pwN-GXjaEEGrGwYO5jYu4_pVEzqId94O5vJT2ExATCqatcMnsqmHO2EqJnSQuNgK.bJh1BifxThnFcTAY?startTime=1618593400000

Webinar link(s):

Dysphagia the silent killer:

https://www.youtube.com/watch?app=desktop&v=q-tWmMYQhHc

Dysphagia animation:

https://www.youtube.com/watch?v=VoSMA2Anq3U

 

Swallowing techniques:

https://www.youtube.com/watch?v=WvV-XXggx3g

 

The Breather – exercise tool:

https://www.pnmedical.com/start/

 

Session 15 -- 3/19/21:  Our Future is in Their Hands

Sponsor:   Ernie Atkins – PEP4U

Presenter(s):  Chapman University Health Professional Students

Duration:  45 mins + Q&A (optional)

Summary:

This week, we have a special presentation prepared by medical students studying under our very own Dr. Tricia Brown and Gabi Frei at Chapman University. 

 

These students, who hold the future of medicine in their hands, will discuss a wide range of health topics, including obesity, hypertension, diabetes, asthma, COPD, and a host of other maladies that we all need to monitor to ensure and improve our quality of life. 

 

Strict medication adherence for all of these conditions is a theme running through the presentation. 

 

Included is a review of current information on Covid19 and the vaccines available.

 

The session concludes with a live Q&A session, so be prepared with your general health and medical questions. Let’s enjoy their passionate pursuit of health and wish them luck in their careers.

 

Session 14 -- 3/5/21:  We Fight Better When We Fight Together

Sponsor:   Ernie Atkins – PEP4U

Presenter(s):  Lauren Simmons, founder of PD Buzz

Duration:  50 mins + Q&A (optional)

Summary:

Parkinson's is a journey that should not be taken alone.  It can be very isolating for not only the person with the diagnosis but for the care partner as well.  Covid has made the situation even more difficult.  Lauren will be speaking about the importance of social connections and activities for people with Parkinson's.

 

Lauren Simmons was diagnosed with Parkinson's disease four years ago at the age of 54.  After getting over the initial shock and devastation of the diagnosis, she decided to fight back and joined Rock Steady Boxing.  The exercise was a tremendous help but the social connection and support were the clincher in setting her outlook on the disease.  A year later, she became a Rock Steady coach.  A year after that, she launched the website PDBuzz.com to help others in the area get connected to the Parkinson's community.  Lauren now spends many hours a week advocating for people with PD, meeting with those newly diagnosed, helping run a support group, and exercising like crazy in order to stay as healthy as possible. 

PEP4U Video link:

https://us02web.zoom.us/rec/share/6SemCHwLF0ST-FXajGzI9b4U9KCOqiKIOFGHMd7moUbUQHeZ5AG0GHuD-CrdfXA.E1I1nkyP9ED53fM0?startTime=1614968282000

Additional Resources:

 

https://pdbuzz.com/

https://www.parkinson.org/Living-with-Parkinsons/Resources-and-Support?utm_source=google&utm_medium=adgrant&utm_campaign=&utm_term=&gclid=Cj0KCQjwi7yCBhDJARIsAMWFScOvVf0kVOvVMJGqOPi1dG6USZ9eaWiXiT0dHJ0DsEj2s7M81KKi80kaAs4-EALw_wcB

https://www.patientslikeme.com/

 

Session 13 -- 2/5/21:  Living the Good Life with Parkinson's

Sponsor:  Davis Phinney Foundation for Parkinson's

Presenters:  Dr. Laurie Santos, Yale University​; Davis​ & Connie Phinney

Duration:  50 mins + Q&A (optional)

Summary:

This webinar may become the favorite PD Education Hour session.  In it, Dr. Mel Dizon, host and director of education at the Davis Phinney Foundation, applies her expertise to address how to live “the good life” while living with PD.

In Spring 2018, Dr. Laurie Santos taught “Psychology and the Good Life” for the first time at Yale.  It quickly became the most popular class ever taught at Yale. 

To end the session, (the) Davis Phinney and his wife and primary caregiver, Connie Phinney, lead a discussion and open the floor for questions.  They discuss “rewirement” activities that create new happiness habits, boost your mood, and improve your overall well being.

YouTube Video link:

Parkinson's and the Good Life with Dr. Laurie Santos, Davis Phinney, and Connie Carpenter Phinney

Additional Resource:

Davis Phinney Foundation for Parkinson's

 

Session 12 -- 1/22/21:  Vertigo and Dizziness in Parkinson's

Sponsor:  Parkinson's Foundation

Presenters: 

 

Julie Kurek, M.D.

Assistant Professor of Neurology

Medical College of Georgia

Kate Lewis

P.T., DPT, NCS

Vanderbilt University Rehab Institute

Duration:  50 mins + Q&A (optional)

Summary:

There are four cardinal signs observed clinically and used to diagnose Parkinson’s.  One of these four, Postural Instability (P.I.), has not been reviewed as part of the P.D. Education Hour.  Until now. 

Note that P.I. becomes more prevalent as the disease progresses.  So, even if you feel fine now, it’s essential to understand this dangerous condition’s mechanisms and treatments. 

A quick preview of our bonus topic - I recently found a short YouTube video of Parkinson’s and therapy dogs.  We’ve had quite a few new adopted puppies in the group, so join us this Friday to watch the video.  And remember to hug your puppy!

 

Session 11 -- 1/8/21:  Pain and Parkinson’s

Sponsor:  Davis Phinney Foundation

Presenter:  Melanie Dizon, DFP; Dr. Janis Miyasaki Director of Parkinson’s and Movement Disorders Program, University of Alberta

Duration:  50 mins + Q&A (optional)

Summary:

After watching this video, I’m excited about reviewing it again with PEP4U folks. There are many useful “nuggets” of wisdom that speak to issues we all have. Dr. Miyasaki reviews the link between pain and Parkinson’s. Some key points covered in this webinar:

 

  • Forms of Pain

  1. Musculoskeletal

  2. Neuropathic

  • Neuropathic pain progression

  • Pain treatment

  1. CBD

  2. Pain Ladder

  • Pain & depression

  • Palliative care

  • Shortness of breath

  • Botox for dystonia

  • DBS for pain

Video link:

Pain and Parkinson's

 

Session 10 -- 12/11/20:  Speech Therapy for Parkinson’s

Sponsor:  Eugene Speech Therapy

Presenter:  Sierra Speech Therapist

Duration:  35 mins

Summary:

For this PD Education Hour we will hear from a speech therapist that works primarily with Parkinson’s patients.

Instead of one long video I’ve culled 7 short 4-5 minute videos from the website.  Each video addresses a separate aspect of Parkinson’s-specific speech therapy.

 

The first video introduces us to a Parkinson’s patient that describes his struggles and the life-changing speech therapy experience.

 

Subsequent videos cover topics from home workouts to vocal hygiene.

 

Don’t miss the additional resources, which include a speech assessment tool.

 

Webinar links:

Patient:

Parkinson's Disease Speech and Swallow Therapy with Vitalstim

Home Therapy:

Parkinson's Home Speech Therapy Workout

 

Exercises:

Speech Exercises for Nasal Voice

 

Stretches:

Stretches for Voice Therapy

 

Useful phone apps:

Three Apps for Parkinson's Home Practice

 

Swallowing:

Swallowing Phases | Dysphagia Review

 

Additional Resources:

 

Session 9 -- 11/27/20:  Nutrition and Parkinson's Disease

Sponsor:  Davis Phinney Foundation

Title:  Nutrition and Parkinson’s Disease

Sponsor:  Parkinson’s Foundation

Presenter:  Heather Zwickey, Ph.D. Professor of Immunology

Duration:  40 mins

Summary:

 

We have a special holiday treat for this week’s PD Education Hour.  Gabi Frei will join us to discuss nutrition.  Gabi is, among other things, a “gourmet” chef with a real understanding of how food choices and nutrition impact our feeling of wellness.

 

Gabi and I reviewed several webinars for content, format, and length.  We both agreed that the approach taken here is both educational and practical.

 

This webinar includes a review of nutritional properties that provide neuroprotection to slow the progression and antioxidants to reduce inflammation.

 

Dr. Zwickey gives recommendations for the best meals from breakfast to dinner, including foods to avoid (no more pizza ☹).  But, I’m thrilled to report banana nut muffins are part of the ideal breakfast.  Caffeine “makes the cut” as well.

She discusses specific PD symptoms and how nutrition can be employed to control them.

 

Don’t miss the additional resources, which include a nutrition worksheet.

Webinar link:

Nutrition and Parkinson’s Disease

 

Additional Resources:

 

Session 8 -- 11/13/20:  The Science of High-Intensity Exercise and Impact on PD

Sponsor:  Davis Phinney Foundation

Presenter:  Meghan Malley, PT, DPT

Duration:  25 mins + Q&A (optional)

Summary:

This webinar has to be one of the best I’ve run across.  It’s a short 25 minutes, but it’s packed with a ton of great information for folks like us that already believe in the benefits of exercise.  As you watch this webinar, I found myself saying things like:  “That’s why Gabi has me doing that?” or “That’s why Aimee/Cathy/Stephanie keeps pushing me.  ”Honestly, if nothing else, this webinar is a testament to the professionalism of our terrific trainers.  You’ll leave this webinar with a renewed commitment to exercise and a better idea of why you’re doing things and what the specific benefits are.  Plus, it’s only 25 minutes long.  You’ll have plenty of time to deal with anything a Friday the 13th can throw at you.  I have included a few written pieces on exercise.  I find the APDA guide to be incredibly useful and comprehensive.

Video link:

The Science of Intense Exercise:  The Victory Summit® Parkinson's Support Symposium

Additional Resources:

 

Session 7 -- 10/30/20:  What, When, Why & How to Treat Dyskinesia

 

Sponsor:  Davis Phinney Foundation

Presenter:  Dr. Irene Malaty + 3 PWP panelists

Duration:  50 mins + Q&A (optional)

Summary:

I chose this webinar for Session #7 of the PD Education Hour because dyskinesia is relevant to all of us. The panel includes three People with Parkinson’s (PWP) whose insights are terrific.  Along with dyskinesia, the panel discusses other topics relevant to folks like us that live with Parkinson’s 24-7-365.

The Davis Phinney Foundation works on techniques for living well with PD. This video is an excellent example of DPF material to help us learn to live well with PD.  I’ve included some DPF printed material as well.

 

The MJ Fox Foundation focuses on finding therapeutics and cures for PD.  I’ve added some material from the MJFF that clinically describes dyskinesia.  A short MJFF video, along with reading material, is included.

 

Video links:

Webinar Managing and Treating Parkinson's Dyskinesia

Dyskinesia:  Hope on the Horizon

Additional Resources:

 

Session 6 -- 10/16/20:  Benefits of Trekking/Walking Poles for PWP

Sponsor:  PEP4U + Davis Phinney Foundation for Parkinson’s

Presenter:  Ernie #2 + multiple professionals

Duration:  30 mins + Q&A (optional)

Summary:

 

I recently ran across a short discussion on the benefits of trekking poles for People with Parkinson's (PWP).  It struck a chord with me; I used trekking poles for years when I hiked on challenging trails.  The poles spared my ankles and other joints.  I was able to navigate some dicey sections safely.

It turns out that similar poles are also useful for urban hiking.  They are especially helpful for old folks (like us) with walking issues.

This session included discussions with movement disorder professionals that highlight poles' utility for PWP.  It included a few videos on how to buy and use poles explicitly designed for us.

Zoom Link to the recording:  

https://us02web.zoom.us/rec/share/y7xUASdIwRBitEXd9RT5hYSoSsfO0ewZ6aomWxR7x0UqcF6WqlKj-_NdWoTDTGQ.f8I75o761d5QQV9s?startTime=1602867532000

Additional Resources:

The nine "best" walking poles

How to Nordic walk with urban poles

WalkingPole.png
 

Session 5 -- 10/2/20: Sleeping Well With Parkinson’s Disease

Sponsor:  MJ Fox Foundation

Presenter:  Multiple professionals

Duration:  50 mins + Q&A (optional)

Summary:

Dave Iverson, my favorite webinar moderator, hosts Michaels Sweet, a PwP, and two neurologists, one from University of Miami and another from Harvard Medical School.  This presentation includes access to a 4-page guide on Sleep and Parkinson’s.

They will cover multiple aspects of PD-related sleep disturbances, including:

1)  Define the sleep disorders associated with PD

2)  How to tell the difference between disease-induced sleep problems and medication side effects

3)  Best practice for treating sleep disorders

4)  New research covering sleep disorders

YouTube Video link:

https://youtu.be/swA6UbRbgjc?t=2

PDF File:  "A Practical Guide on Sleep and Parkinson's Disease".  To download it, click the thumbnail below, then in the resulting new browser window, click the white rectangle icon containing the "down arrow".  This icon is located in the upper right hand gray border.  Once you click this, the document should save to your Downloads folder.

 

Session 4 -- 9/18/20:  Mindfulness Meditation

Sponsor:  PEP4U

Presenter:  Caryn Sussman

                     Mindful Heart Connection

Length:  40 minutes + Q & A

Summary:  

Caryn is a certified Mindful Meditation Teacher.  She offers both individual and group training and leads on-line meditations every week.  Caryn will show how MM can cultivate more ease, peace, clarity, and enhanced well-being.  Visit Caryn's website to see more of her offerings.

Ernie #2 will offer a brief personal anecdote.  Last week he had two root canals.  Using Caryn’s MM techniques, he nearly fell asleep multiple times during the 90 min procedure and experienced no “dental procedure” anxiety.

 

Caryn will cover several topics, including: 

  1. An overview of MM,

  2. The many benefits of MM,

  3. MM options,

  4. Resources for continuing your exploration of MM

 

Caryn will conduct a brief MM session during this webinar.  Find a comfortable chair, take a break, and enjoy the respite.

Please be sure to invite your support team and family members.  Everyone will enjoy and benefit from this session of the PD Education Hour.

Video Replay Link:  
https://us02web.zoom.us/rec/share/iBPvSkyLCCy2msqluNCqRs0rbMn5fQNvFButJYTrGXLEpXphn49kdPdHcJSeyuIO.EBYUQXQV8VsnVWaE?startTime=1600447990000

 

Session 3 -- 9/4/20:  Mood Changes -- Anxiety and Depression in PD

Sponsor:  MJ Fox Foundation

Presenter:  Multiple Professionals

Length:  50 minutes + Q & A

Summary:  

Karen Jaffee, a member of the MJFF Patient Council, moderates a discussion of mood changes with two Professors of Psychiatry as well as a PWP.

 

They cover several topics, including:

1) Why mood changes are typical for PWP

2) Differences between anxiety and depression

3) Treatment options

4) New research covering mood in PD

Video Replay Link:  https://www.youtube.com/watch?v=rbqin8qpk0o

 

Session 2 -- 8/21/20:  Managing the Motor Symptoms in PD

Sponsor:  Parkinson's Foundation

Presenter:  Dr. Sotorios A. Parashos, Minneapolis Clinic of Neurology and Struther's Parkinson's Center

Length:  40 minutes + Q & A

Summary:  

Dr. Parashos explains the physiology associated with muscle control in a clear and simple manner.  He discusses how PD causes the motor symptoms we endure.  He spends a significant amount of time on how we can make simple changes to address freezing, falling, speech, and overall activities of daily living.  He is a big advocate of the LSVT Big approach and exercising.  There is an informative, 25 min. Q&A session after the 40-minute presentation.

Video Replay Link:  https://www.youtube.com/watch?v=ALCJgNoBJGI&feature=youtu.be

 

Session 1 -- 8/7/20:  The Parkinson's You Don't See:  Cognitive and Non-Motor Symptoms

Sponsor:  Davis Phinney

Presenter:  Joanne Hamilton, Ph.D., ABPP-CN, Advanced Neurobehavioral Health of Southern California


Length:  26 minutes

Summary:  

I chose this for the first session because it addresses symptoms that are very much a part of Parkinson's.  While screening this video, there were numerous instances where I said out loud:  "That's me, for sure."  I came to realize that some of the first symptoms are not visible to others.  Dr. Hamilton includes a critical discussion of how to distinguish symptoms caused by Parkinson's from those caused by medications.  Dr. Hamilton is a very engaging speaker.  Her presentation is a must-see. 

Video Replay Link:  https://www.youtube.com/watch?v=S2LP_5PC9LU

Recap and Discussion:

In our first PD Education Hour, we briefly discussed the difference between Parkinson’s induced cognitive impairment/dementia and Alzheimer’s.  We learned that Parkinson’s dementia does not “look like” Alzheimer’s. With PD dementia, you won’t “forget your loved ones.”  Here is a table showing the differences.  A written article that further discusses this topic has been uploaded to the Education page of this site.

ParkinsonsAlzheimersComparison.jpg