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.

Previous PD Education Hour Presentations:

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

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

One tap mobile
+14086380968,,83422548204# US (San Jose)
+16699006833,,83422548204# US (San Jose)

Please consider supporting our programs with a regular monthly donation

 
 

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

 

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:

 

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:

 

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

 

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.

 

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.

 

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.

 

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

 

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:

 

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

 

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/

 

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.

 

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/

 

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

 

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!

 

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

 

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:

 

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:

 

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:

 

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:

 

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
 

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.

 

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

 

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

 

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

 

8/6/20:  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