Follow Up From Our February Session 

Strengthening the CP - PWP Relationship

Here are the responses each group generated to the small group questions:

PWP Response to:    

What are the 3 most important messages you believe need to be heard by CPs?

1. We need to develop a system (like a phrase), that addresses the level of care we need at any given time.  We understand that our needs change day-day (or hour-hour), and that in general, we don't want help unless we ask for it.
2. We want you to include us in social conversations, ask us every once in a while if we have something to add to a given discussion.
3. You need to know that we greatly appreciate the support you give us,  We pledge to be more vocal in our appreciation.
4. You need to take some time for yourself, go out with friends, go to a spa, etc.  We are ok with having some time alone too. CP Response to:    What are the 3 most important messages you believe need to be heard by PWPs?

1. Be willing to let us make some tough decisions that affect the safety of us both, most particularly as it relates to driving.  
2. Be realistic about your limitations
3. Be more cognizant about your personal grooming and/or don't be defensive if I point an issue out to you (I have your best interest at heart)
4. We (spouses) still want to be your sweethearts.
5. Stand closer to us when you speak, and don't be annoyed if we ask you to repeat yourself.
6. We are thrilled that you can still laugh at your challenges.
7. We admire that you still look for opportunities to use your skills.
8. Let us know what worries you.
9. We appreciate when you show appreciation to us. I think we need a lesson on the number 3, but that's for another day

Here are some important links to resources mentioned yesterday:

PD School:   http://www.pd-school.teachable.com

This is a very comprehensive series of videos addressing just about every aspect of PD there is.  There are 24 videos (for streaming) and the cost is $10 per individual video or $150 for the entire set.  The instructor is a world-renowned researcher and nutritionist Laurie Mischely.  

She has made the first video "Orientation" free to all, and I cannot stress enough how beneficial and informative this video is.  You should all make time to watch this video!

Pro-PD  https://educationismedicine.com/pro-pd

Dr. Mischley has over several years accumulated a database of information on the severity of symptoms that 2,000+ PWP report via an online survey.  The participants complete the survey over time. and the data produces a line indicating the trajectory of symptom severity over time. She then uses this data to find out those "outliers" from the normal - in other words, those individuals whose disease is NOT progressing at the average pace of progression.  She then determines what he group of PWPs who are doing better than average are doing differently, and uses that information to encourage certain behaviors. For example, exercising 3 or fewer times per week does not seem to result in any improvement, but 4 times per week does, and interestingly, 5 times is better than 4, 6 is better than 5 and 7 is better than 6.  She does the same thing with the folks who are doing worse than average and discourages their behavior (for example eating dairy products has a strong correlation to the disease progressing faster than the average pace).

The link above lets you take the survey and determine your Pro-PD score.

Daily Dose PD  https://www.dailydosepd.com/browse

This is an exercise video site, with a ton of PD-specific workout videos, including Stretching, High Intensity, Boxing, Chair Exercises, Tai Chi, Yoga, Hand Exercises, and even Face Exercises.  The cost is $30/mo., but they offer a free 30-day trial, which I think everyone could benefit from.

Caring and Coping  https://www.parkinson.org/pd-library/books/caring-and-coping

This is a comprehensive (180 pages) guide for Care Partners.  I encourage all care partners to download this book (it is a free download).

Reminder:  Next month (Wednesday, March 18th) we have 2 very special Movement Disorder specialists as guest speakers.  

Dr. Aaron Ellenbogen from the MIND Institute in Farmington will address Non-Motor symptoms and Dr. Shana Krstevska will address Complementary and Alternative Therapies.  

Strengthening the Patient-Care Partner Relationship

Strengthening the Patient-Care Partner Bond

A vital part of managing any chronic disease is to ensure that the patient and their care partner(s) respect each other and work together as a team.  Session 7 of our PD SELF program focuses on how to ensure Patients with Parkinson's (PWPs) and their Care Partners (CPs)  are BOTH getting what they need emotionally, psychologically, and physically.  Toward this goal we will be developing mindfulness, reflection and journaling skills.  Reminder:  Session 7 has been swapped with Session 6 to accommodate guest speakers for Session 6, so February's meeting will be focused on the PWP-CP relationship.   

Care Partnership

The Care Partner is extremely impactful in the well-being of their loved one with Parkinson's. So, it is vital that the Care Partner is aware of some possible pitfalls to avoid in this journey.  Here is just a subset of pitfalls that CPs can fall into:

• Becoming a Care Giver not Partner
  
• Getting Burned Out (Physically or Emotionally)
  
• Letting PD define your life 
  
• Many others...

We will address these pitfalls, and open lines of communications between PWPs and CPs as part of our February session.  Just a reminder:  we meet Wednesday February 19th, from Noon - 3pm in the Michigan Parkinson Foundation building.  See ya on the 19th!

Links from Session 5

Links to a wealth of PD information 

A special thank you to Dolly Niles, Executive Director of Quest Research Incorporated for her
excellent presentation and discussion regarding the Clinical Trial process the current state of
drug research.

Below are some links that were mentioned during yesterday's session, that you may
find beneficial:

Fox Insight

Fox Insight is an online clinical study for both people with and without PD, hosted by the
Michael J Fox Foundation.  Volunteers complete a 15-20 minute online survey once every
3 months and the responses are then added to a huge database of information, from which
researchers can then gain unprecedented insight into this disease.  

Fox Trial Finder

Fox Trial Finder is a tool that sifts through hundreds of PD research studies and matches
participants to the studies that are being conducted in their geographic region, and are targeting
their particular symptoms.  Here is a handy blurb from the Michael J Fox Foundation on
Clinical Trials:  Clinical Trials 101

ClinicalTrials.gov

This is the "granddaddy of them all" clinical trials site.  It has information on every clinical trial
hosted in the US for every disease.  It also has very powerful filters so you can search for PD studies
within a certain radius of your home, targeting specific symptoms, hosted by a particular site,
in a specific trial phase, and so on.

Quest Research Inc.
This is the organization that Dolly is the Director of. They do a lot of trials for PD (the following
excerpt is from their January 2020 newsletter:

"Newly diagnosed and sorting thru your options? Consider a study using a well-known medication for diabetes that they think may help with neuroprotection.  Experiencing “wearing OFF” times in between doses of your levodopa? Consider our trial with an extended release medication to keep you ON longer in between doses.  Having a little trouble with memory or executive function?  Several new medications are being tested for people with Parkinson’s and MCI (Mild Cognitive Impairment).   Apprehensive in general because it’s a mystery? Participate in the free genetic test that is thoroughly investigating up to 68 genes that may be linked to Parkinson’s.  That study is one visit, no new medications and you’re paid $50!Lastly, we continue to offer studies that are for medications attacking alpha-synuclein – the “bad protein” in the brain that scientists believe led to Parkinson’s disease.  This is the most exciting treatment around with one of our medications moving into Phase III this year – this means it’s showing hope and has a good safety profile!"

Contact Info:
QUEST Research Institute
28595 Orchard Lake Road, Ste. 301
Farmington Hills, MI 48334
Phone: 248-957-8940 / 888-QUEST-24Fax: 248-957-8944
The Science of Parkinson's

Their tagline is "Plain English information about the research being conducted on
Parkinson's"  and this is a phenomenal resource if you want a deeper understanding of the
science behind most of the PD research, Don't be surprised if you find yourself reading posts
several times to fully understand the topic.

Journey with Parkinson's

Hosted by Franks Church, a PWP and former professor, and researcher in Biomedicine. 
This is a unique blog in that he shares personal accounts of his "journey with PD" and includes
a fair amount of science in most posts.

Parkinson's News Today

This is an "all news, all the time" type site.  It has frequent updates, with an emphasis on the
latest PD research news.

One last thing, do yourself a favor, and get a RSS feed reader to consolidate all the blogs you
may follow into one presentable package.  Here is a top ten RSS feed reader's article to help you
get started.  I personally like Feedly and Bloglovin, and the screenshot below shows the nice,
magazine-like presentation of my PD feeds.

Exercise Programs Offered in Metro Detroit

Our 1st Module is Completed

One down and 7 to go...  Our first module of PD SELF version 4 was well attended and a wonderful way to begin the program!  We have a rich diversity of people, who are willing to share hopes, fears, successes and failures with each other, so we are very optimistic that this group will collectively be very self-efficacious and thrive despite their PD diagnoses. 

There were 3 slides that we shared yesterday that were not in your binders, some with helpful hotlinks.  I have included them below:

Thanks, MPF!  The Link to MPF is:  https://parkinsonsmi.org/

The link to Take Power over Parkinson's is HERE

Links for the above slide are:

Fox in the D Gala

Parkinson's Disease and You Symposium

Everybody vs Parkinson's Gala

Exercise for Brain Change Community Talk (Flyer Below):

Detroit Chapter of PD SELF begins its 4th year on September 18th

New Program begins Wednesday, September 18th, 2019.  We meet in the conference room inside the Michigan Parkinson Foundation building (30400 Telegraph Rd.  Bingham Farms, MI  48025) Noon - 3pm.  Subsequent meetings are on the 3rd Wednesday of the month, always from noon- 3pm.  We look forward to another great year with a wonderful group of folks!

PD SELF Well Represented at Michigan Parkinson Foundation Walk

 The Michigan Parkinson Foundation's annual "I Gave My Sole for Parkinson's" fundraising walk was held on Saturday, June 8th at Birmingham Seaholm HS.  Conditions were picture perfect with bright, sunny skies and mild temperatures, the event was a great success.  PD SELF had formed a fundraising team which had collected more than $6,000, finishing as the 5th highest fundraising team.  PD SELF alum Sue Pretty was named this year's honorary Chairperson, and her team (Sue's Solemates) easily raised the highest amount of any team, topping the $12,000 mark.  All, in all, it was a great day, meeting with many PD SELFers, including one who will be in next year's group! 

Honorary Chairperson and PD SELF alum Sue Pretty leads the group for this year's Walk

PD SELF team with family and friends

PD SELF Team Formed for MPF Annual Walk

PD SELF Team 

The Michigan Parkinson Foundation hosts the I Gave My Sole for Parkinson's Fundraising Walk annually to raise $ and awareness for the organization.  Once again, the PD SELF class has formed a team to assist in the fundraising effort.  Here is the link to our team page:  Our Team. Our goal is $10,000, so we need lots of help!  Here is a video to explain in more detail MPF and the Walk, please share this with friends and family!

Local Experts to Share Insights as Guest Speakers

We are delighted to have 3 very knowledgeable experts lined up to address our PD SELF group as guest lecturers for our next 3 sessions! 

On Wednesday, January 16th,  Dolly Niles, Executive Director of Quest Research Institute will present "Managing PD Medications", a snapshot of current medications approved to address PD symptoms; as well as "Medical Research and You", a guide to the clinical trial process and the benefits to both PWP and care partners through participation in clinical trials. 

On Wednesday, February 20th, Dr. Neepa J Patel, MD a Movement Disorder Specialist with Henry Ford Health System will present "The PD You Don't See:  Non-Motor Symptoms".  Often times the non-motor symptoms are "swept under the rug" because they are less obvious to the public, yet they can be the most troublesome symptoms for those affected with PD to deal with.

On Wednesday, March 20th, Dr. Shana Krstevska, MD a Movement Disorder Specialist with Henry Ford Health System will present "Complementary and Alternative Therapies for PD".  She will discuss non-mainstream therapies such as acupuncture, diet, and neuroprotective foods, supplements, etc. used either to complement traditional therapies or as alternatives to traditional therapies. 

We are especially fortunate to not only have these experts available locally but to have them speak to our group (with each speaker allowing time for informal Q/A sessions after their formal presentation).  Thank you all for your gift of time and expertise.

Goal Setting - The Key to Self Efficacy

This meme says it all...  Our overall goal with the PD SELF program is to have everyone do what they can to positively impact the trajectory of this disease.  In order to do this, setting and achieving goals along the way is crucial.  In Module 2, we will learn how to set meaningful and achievable goals, and how this becomes a key component of achieving self-efficacy.   Once you have become self-efficacious, nothing will stop you from being the best YOU possible!

Reminder:  Module 2 will be held next Wednesday, November 21st from Noon till 2:30 (we will dismiss early for Thanksgiving).  We meet in the Conference Room inside the building that the Michigan Parkinson Foundation resides (30400 Telegraph Rd.  Bingham Farms 48025). 

Genetic Testing

Genetic research seems to be gaining momentum within the PD research community.  I work with Quest Research Institute, and they are involved in a study involving a drug which inhibits the LRRK2 protein (there is a genetic link between the LRRK2 gene mutation and PD).  This study (and I am sure more like this are on the horizon) requires that the participants know their genetic condition (ie. do I have the LRRK2 mutation).  Fortunately, there is a way to get this genetic testing done at no cost to you.  The Michael J Fox Foundation has partnered with 23andMe to offer free heritage and genetic testing for eligible PD  patients participating in the Fox Insight program.  The program is an online study of nearly 30,000 PD patients who answer questions relative to their condition approximately every 90 days.  To be eligible, you must reside in the US and have begun the Fox Insight program.

 The "Third Thursday" webinar by the MJFF this afternoon titled: "Research Year in Review and Look Ahead will most likely have much to say on genetic testing.  Also, from the MJFF blog earlier this week, LRRK2 crystals will be studied on the International Space Station (LRRK2 Headed Back to Space).  All  very interesting and encouraging!

See ya next Wednesday!

Tomorrow, we begin the 3rd installment of the wildly successful Parkinson's Disease Self Efficacy Learning Forum or PD SELF.  What is this program you may ask?  The PD SELF-website (www.pdself.org) sums it up best this way:

The aim of PD SELF is to provide newly diagnosed people with Parkinson’s and their care partners with a disease-specific, person-specific, interactive learning approach to self-efficacy that, together with basic understanding of the disease and its progression, will allow them to improve their quality of life over time.

Founded in 2013 by Parkinson patient Diane Cook, a proof of concept was done in the Denver area with about a dozen students.  Based on its initial success, the program was run as a pilot program in 10 US cities, starting in September of 2015.  The Detroit team of trained instructors (Steve Femminineo, PD patient; and Brian Cooper,  Occupational Therapist) were part of this pilot program and have worked together to offer the program in the Detroit area ever since.  The Michigan Parkinson Foundation has co-sponsored the program locally through subsidizing the meeting room, as well as publicizing the program via its extensive marketing reach.

The program begins Wednesday, October 10th, and runs from Noon - 3:00 pm.  All other modules meet on the 3rd Wednesday of the month, with the exception of May (which will be on May 8th due to a scheduling conflict with the conference room.  All meetings run from Noon until 3:00 pm.

Here is the Syllabus for Detroit PD SELF:

Date	Topic
October 10, 2018	Module 1 - Adjusting to Parkinson's Disease
November 21, 2018	Module 2 - Introduction to Self Efficacy
December 19, 2018	Module 3 - Benefiting from Exercise and Neuroplasticity
January 17, 2019	Module 4 = 4  PD Medications and Treatments
February 20, 2019	Module 5 - Understanding Non-Motor Symptoms
March 20, 2019	Module 6 - Creating Your Personal Healthcare Network
April 17, 2019	Module 7 - Strengthening the Relationship Between PWP and Care Partner
May 8,2019	Module 8 - Going Forward

Note:     All sessions run from Noon - 3:00 pm at the Michigan Parkinson Foundation offices 

            ( 30400 Telegraph Road, Suite 150   Bingham Farms, MI 48025)