COVID-19 Induced Apathy: Is That a Thing?

By Sharon Krischer

Originally published by ParkinsonsDisease.net on October 13, 2020

How many weeks has it been now? Months? I have totally lost track. It must be at least 6 months or more.

At first, it was strangely energizing. We had all this time to get caught up on the things we needed to do and the things we wanted to do. And now what? We are making up things to do. There is no motivation to get dressed unless you are leaving the house, which happens only a few times a week, if at all. And even then, yoga pants will work just about anywhere except the golf course.

Apathetic elderly Latina woman swipes screens featuring virtual screens of yoga, wedding, and baseball game cardboard cutouts away from her
from ParkinsonsDisease.net

What should we do today? Nothing?

This morning, Mr. Twitchy and I looked at each other and asked what we had to do today. With a collective sigh, we both said “nothing” in unison. We decided to ride our bikes to see our grandchildren and surprise their parents. It is a short ride, just 2 1/2 miles each way. We were home by 9:00am and have been staring at each other ever since.

Read the rest of the article here

An interesting study about COVID-19 and Social Isolation

Social isolation often leads to apathy. The authors talk about the effects of isolation related to COVID-19 on People with Parkinson’s.

Synergy of pandemics-social isolation is associated with worsened Parkinson severity and quality of life

October 8, 2020 in Nature by Indu Subramanian, Joshua Farahnik & Laurie K. Mischley 

figure5

Social isolation and its deleterious effects on health increases with age in the general population. People with Parkinson’s Disease (PWP) are no exception. Social isolation is a risk factor for worsened health outcomes and increased mortality. Symptoms such as depression and sleep dysfunction are adversely affected by loneliness. There is a paucity of research on social isolation in Parkinson’s disease (PD), which is all the more critical now in the setting of social distancing due to COVID-19. The goal of this study was to survey individuals with PD to evaluate whether social isolation is associated with PD symptom severity and quality of life. Read the rest of the study in Nature

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Did your doctor prescribe exercise?

Exercise needs to move from a recommendation to a prescription for people with Parkinson’s.”

Dr. Jay Alberts, Department of Biomedical Engineering, Cleveland Clinic

Today, Jay Alberts, PhD, was my guest on Sunday Mornings with Twitchy Women. If you are not yet familiar with his work, you should be if you are a Person with Parkinson’s.

Jay Alberts

At the Cleveland Clinic in Ohio, Vice Chair of Innovations within the Neurological Institute, Dr. Alberts holds the “Edward F. and Barbara A. Bell Family Endowed Chair,” and is a staff member within the Department of Biomedical Engineering. His research is focused on understanding the effects of neurological disease or injury on motor and cognitive function and developing disease-specific interventions to improve motor and cognitive performance. 

In 2003, on a group ride across Iowa for the annual RAGBRAI bicycle race from the Missouri River to the Mississippi River, Alberts noticed that the woman who was riding with him on a tandem bide, start showing improvement in some of her PD symptoms. That one little detail led to research on the effects of forced-exercise’s impacts on motor functioning.

The research

Since 2012, Alberts has been conducting clinical trials to compare the effects of forced exercise cycling on motor and non-motor performance compared to voluntary rate cycling and a non-exercise control group. In one trial, the results showed that an eight-week, high-intensity aerobic exercise program markedly enhances overall motor function, certain aspects of walking, and cognitive function in people with Parkinson’s.

Dr. Alberts and his colleague Dr. Anson Rosenfeldt looked at the effectiveness of Pedaling For Parkinson’s—an existing, low-cost community cycling class—and how participation in the class may slow Parkinson’s progression. Moving from the lab to “real life” is a big step toward increasing access to classes so even more people can live well with Parkinson’s.

With additional grants from the National Institutes of Health (NIH) Alberts and his colleagues have studied the impact of exercise on Parkinson’s building on data recorded in previous studies. The most recent grant from the NIH indicates that cycling may be an ideal mode of exercise for people with Parkinson’s because regardless of disease severity, individuals can achieve and maintain a moderate to high intensity of exercise. *

In light of this, Alberts recommends daily exercise, with at least 3 days a week of 30 minutes intense exercise. If you are riding a stationary bicycle, he recommends getting your cadence up to 75-80 and gradually increase the resistance to get your heart rate up to 60-80% of your target heart rate.

Currently, Alberts is doing research on PwP’s using a Peloton Bike. If you are interested in participating, contact Liz at the Cleveland Clinic. Previous experience with a Peloton bike is not necessary.

Current study using Peloton Bikes
Peleton Study

With all of this evidence, you would think that exercise would be recommended from the day a person receives their diagnosis. It should be a no brainer, right? Unfortunately, many doctors do not even discuss exercise with their patients. Many of them may not even be aware of this research.

We need your help

What can you do to make sure that newly diagnosed PwP’s, and us veteran PwP’s too, know that exercise is essential?

  • Talk to your doctor, physical therapist and other care providers about Exercise as Medicine.
  • If you go to a Movement Disorders Clinic, speak to the head of the clinic about the importance of Exercise as Medicine and ask them to share it with everyone in the clinic. Better yet, ask if you can talk to the group about how exercise helps you every day to live better with PD.
  • Read Jay Albert’s articles on the Davis Phinney Foundation website.
  • Check out other Parkinson’s organizations for their recommendations and literature on exercise for PD.**
  • Take copies of these articles and brochures from the organizations about exercise for PD to your doctor, clinic, etc. and ask them to read them and distribute them to their patients. Especially the newly diagnosed.
  • Find out what your medical insurance covers for exercise. If they do not provide any coverage, send them the same information.
  • Finally, offer to talk to newly diagnosed patients about how exercise has helped you live better with Parkinson’s.

No one knows better than those of us living with PD about the benefits of exercise on our quality of life. So please spread the word.

Do you ride a Peloton? Join our FaceBook group Parkies with Pelotons

*A Timeline of Jay Alberts Parkinson’s Research, Davis Phinney Foundation

**Check out these websites for more information on Exercise and PD.

Parkinson’s Foundation

Michael J Fox Foundation

Davis Phinney Foundation

Brian Grant Foundation

What is happening with Parkinson’s research in 2020?

“Grow every stem cell,
search every gene,
sequence every exosome,
till you cure PD!”

Tom Isaacs, to the tune of Climb Every Mountain, for the World Parkinson’s Congress 2016

Dear Readers,

For the past 4 years I have tried to summarize for you any PD research that I have come across in layman’s terms, so that it is easier for all of us to understand. In my last post, I stated that I was optimistic about finding a cure and disease modifiying treatments in the next couple of years. I just received a blog post from The Science of Parkinson’s about the current clinical trials that blew me away. The road ahead: 2020 reviews much of the clinical research that is focused on disease modification in Parkinson’s. I knew there is a lot going on with research, but had no idea to what extent. So yes, I am still optimistic that the next couple of years will be some major breakthroughs for us.

There is no way I can summarize all of this for you. My head is spinning just from scanning through the entire article. I need to go back and study it more closely. Here is what the author, Simon Stott, the deputy director of Research at the Cure Parkinson’s Trust, says he will be focusing on:

As stated in the intro, I am going to focus primarily on clinical trials of potentially disease modifying experimental therapies in this post, as a broader discussion of ‘all Parkinson’s research in 2020’ is too greater task.

And in keeping with previous years outlooks, I am going to frame this discussion around the idea that:

Any ‘curative therapy’ for Parkinson’s is going to require three core components:

  1. A disease halting mechanism
  2. A neuroprotective agent
  3. Some form of restorative therapy

Now, the bad news is (as far as I am aware) there is no single treatment currently available (or being tested) that can do all three of these things. By this I mean that there is no disease halting mechanism therapy that can also replace lost brain cells. Nor is there a restorative therapy that stop the progression of the condition.

That statement can obviously be read as bad news, but it shouldn’t.

Let me explain:

A curative therapy for Parkinson’s is going to need to be personalised to each individual, with varying levels of each of the three component listed above. It will be a multi-modal approach designed for each individual’s needs.

For the rest of this post click here.

Warning, this will most likely make your eyes glaze over after a few minutes. Don’t plan to read everything at one sitting. It will take you hours to go through it all. Even if you do not understand it all, I think it will give you some hope for the near future. Enjoy.

Because it is World Parkinson’s Day….

There are many things I want to share with you.

Image may contain: 15 people, people smiling

Yesterday, the first #ParkinsonsEve took place in Great Britain.  I wish I could have attended, but going to Kyoto is a priority this year.  However, those of us who stayed home will have an opportunity to watch at least some of  the conference in the next few days.  Stay tuned for the info on where you can watch it online.  For more info go to parkinsonseve on Facebook.

Update 4/15  Click on the video to see all of the conference speakers:

 

This month, the Parkinson’s Foundation wants to know your 🔑  to living well with PD.

Whether you are living with PD, are a caregiver or a healthcare professional, tell us your tip. From managing freezing to sleeping and bathroom tips — no topic is off limits. Our hope is that others can replicate your tips and make their life just a little easier.

Click here:  #KeyToPD  to share yours.

My  #KeyToPD Finding new friends with PD who understand how you feel.

12 Things You Don’t Understand About Parkinson’s Unless You Have It

Are you familiar with the website The Mighty?  I was not until contacted earlier this week by them to contribute a few quotes for  12 Things You Don’t Understand About Parkinson’s Unless You Have It,  which was published today. The Mighty, according to their website, is a digital health community created to empower and connect people facing health challenges and disabilities.  There is a Parkinson’s community on the website that you can subscribe to, and you can also share your stories, ask questions and connect with other Parkies.

Francesca ParkinsonsChampions Villa's photo.

 

And finally, there were problems with the survey that I sent out a few weeks ago asking how YOU are living well with Parkinson’s Disease.  I want to thank the 139 people who completed the survey, but unfortunately,  I will not be able to use the data.

I am going back to the questions as originally posted on Facebook.

Please list the top 3 things that help YOU to live well with Parkinson’s. Then the flip side – the top 3 things that are obstacles for you:
For example: 
Positive: Exercise, Advocating for myself with my doctors, Friendships with other women with PD. 
Negative: Poor sleep, Tremor gets in the way of doing things, Daytime fatigue 

Click here to take the survey.  Any answers sent by email will not be included in the final report.  Please respond by April 22.  Thank you in advance for helping out.

 

 

 

 

 

Clinical Trials for Parkinson’s Need You!

The answer is truly in all of us, working together. International collaboration is essential for speeding a cure for the 5 million Parkinson’s patients worldwide.

— Michael J. Fox

 

You may ask why you should participate in Clinical Trials for Parkinson’s Disease.   After all, aren’t they always drug trials?  You say you don’t want to be a guinea pig for a pharmaceutical company.    Well, the good news is, not all clinical trials involve drugs.  The bad news is that many researchers cannot complete their studies because not enough people participate in them.

Since being diagnosed 10 years ago, I have participated in a number of studies.  Some of them on-line, some by telephone, and others in person.  Many provide some form of compensation.  One study was a long-term study though the Alzheimer’s Center at UCLA which recruited people with Neurological disorders to look at cognitive differences.  Three years in a row, I was given a 3 hour cognitive test by graduate students, doing tasks such as recalling as many items as possible from a list of 20 words – our brains usually can process a string of 7 items, which is why your phone number is 7 numbers.  Anything over 7 can be difficult to retrieve.  Other tasks included looking at shapes and being asked to replicate them from memory, repeating paragraphs that are read to you, counting, etc.  Unfortunately this study was discontinued due to lack of funding.

This past week I went to USC – University of Southern California (I had to give the other LA university equal time), to work with Dr. Giselle Petzinger, whose research focuses on the effects of exercise on Parkinson’s.  This time, she is looking at the association between fitness and cognitive performance in Parkinson’s Disease.  She wants to see which PwP’s are doing well cognitively and if there is a correlation with the types of exercise they are doing.  This is an 18 month study that involves 3 visits to USC and using wearable devices for 1-week every 3 months.  I was number 15 in the study.  She needs 35 more people to complete the study, but recruitment is going very slowly.

IMG_1857
Stepping over an “obstacle”

The first day included a 3 hour cognitive assessment!  I remembered a lot of the exercises from the tests at UCLA.   I think everyone uses the same resources for measing cognitive ablility.  Day 2 began with a brain MRI.  Then the fun began.  I was escorted to a lab where I got to try out Virtual Reality.  After putting some sensors on my arms and legs, I put on the VR headset, excited to check it out.  I was in a waiting room of some sort, with all kinds of video games on the shelves.  The 360 view was amazing as I turned my head.  But no, that wasn’t for me to use.  Instead I was to walk down a long hallway (I did this on a treadmill) stepping over obstacles of 2 different heights.  Then I had to do it over and over, each time with different instructions.

Day 3 was even more interesting.

IMG_1863
Looking like a Christmas Tree

I repeated the task from Day 2 two more times and then I spent the next half hour getting even more sensors for my last walk on the treadmill.  Have you ever seen how CGI (Computer Generated Imagery) is done to animate a computer designed animal?  That is what I looked like.  Mr. Twitchy says I looked like a Christmas tree!  This last task was to look at gait and balance.  The treadmill has two separate treads that you walk on.  While I was walking at a fairly quick pace, one of the treadmills would slow down or speed up with no warning.  My job was to keep my balance.  I was tethered by a harness so that I would not fall.  After more gait and balance tests I was sent home with my wearables (watch and heart monitor).  I am looking forward to seeing the results of this trial.

How do you find a study that works for you?  You can start with Fox Trial Finder.  It is easy to register, and you will receive notices of trials that you qualify for.  The Parkinson’s Foundation has been following over 12,000 people in 5 countries with the Parkinson’s Outcomes Project.  Check it out to see if you can participate.  Ask your Movement Disorders Specialist or Neurologist if they know of any trials near you.   Ask your PD friends if they know of anything.  If you are interested in the USC trial, contact me at twitchywoman18@gmail.com and I will forward your info to Dr. Petzinger.

April is Parkinson’s Awareness Month.  My challenge to you for April is to find a way to get involved in research.  You can make a difference in your life and the lives of others.  Think about it.  But not too long.  As the Nike ads say “Just Do It