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

Do You Peloton?

pel·o·ton/ˈpeləˌtän/ noun

  1. the main field or group of cyclists in a race
  2. an exercise bike streaming indoor cycling classes to your home live and on-demand.

Mr. Twitchy and I acquired a Peloton bike a couple of years ago. A Peloton Bike is essentially a spin bike with a subscription service of unlimited live and recorded classes, accessible through a large touchscreen. The classes vary in length and difficulty. I try to get on the bike at least once a week, but it is not enough for me to really feel the benefits of it. It seems that the rides are getting harder and harder for me. Maybe it is just that I am getting older and all of the riders are younger than me? Or can I blame it on PD? I needed to find out how other Parkies do with the Peloton bike.

I thought that there must be some other Parkies out there who ride Peloton bikes. About a year ago, I started a Facebook group for Parkies who have Peloton Bikes so that I could find others and compare our experiences. So far we have 32 members in the group and we would really like to increase our numbers.

I loved when Hannah said to us ‘Parkies with Pelotons, YOU lead this ride’.

Amy

One of the women in the group, Amy Montemarano, proposed that we find a live class with Peloton that would be good for our group to join. Amy contacted Peloton and gave them the information about our group. The instructors always call out people and groups that are either in the studio with them or have signed up to join the class live, on-line, so this was a good way to get some publicity for Parkinsons at the same time. On Monday morning, 4 of us joined the 9:55 am class. We were all able to follow each other on the Leaderboard. One rider, Alice said: “That was fun doing a ride together! Lori , I broke a personal record trying to catch up with you.” Lori also broke a personal record because she was so excited to be riding with a group.

Loved riding with other strong Parkies

Lori

We hope to do this again, maybe on a regular basis. If you want to join our little group, go to our Facebook page Parkies with Pelotons. We are a closed group, so you must answer two simple questions: Do you have Parkinson’s and Do you have a Peloton bike? If you answer yes to both, we would love to have you join us.

Other exciting news from Twitchy Woman!

If you missed the PMDAlliance Inspire Me session last week featuring Twitchy Woman, you can watch it here.

And even more exciting, Twitchy Woman is one of 5 finalists for the WEGO Health Awards Best in Show Blog! Winners to be announced next week. Click on the photo for more information.

Working up a Sweat

Intense treadmill exercise can be safe for people who have recently been given diagnoses of Parkinson’s disease and may substantially slow the progression of their condition.  The New York Times.

A lot has happened in the Parkinson’s world this past year.  We have heard a lot about the connection between the gut and Parkinson’s.  And faulty genes, mitochondria, stem-cell treatments, ultrasound treatments, repurposing of drugs, and on and on.  Each month brings some new theory that could just be the breakthrough we were looking for. A month later, there is yet another new finding that could be the one.

But let’s not forget about exercise.  If you have been following me, you know that I exercise a lot.  I go to Boxing for PD classes, yoga and still manage to play some tennis. Last week’s big news was a study published in the NY Times about the benefits of intense exercise for PD.  There have been a number of studies over the past 10 years that have looked at exercise for PD, with varying outcomes.  But this one was apparently the first set up as a clinical trial.   For the new study, which was published in JAMA Neurology, the researchers decided to treat exercise as if it were a drug and carefully track the safety and effectiveness of different “doses” of exercise in a formal Phase 2 clinical trial.  In the trials, those patients in the high-intensity group had better outcomes.   Their findings:  “High-intensity treadmill exercise may be feasible and prescribed safely for patients with Parkinson disease.”  As someone who emphasizes exercise, this did not surprise me.

About six months ago, Mr. Twitchy and I acquired a Peloton Bike.  In case you’ve managed to miss the much-played commercials for Peleton showing a mom exercising on her Peloton Bike in her living room,  while her kids play quietly nearby (whoever dreamed this up does not have small children), the Peloton Bike is a Spin Bike for your home.   It’s not cheap and there is a monthly fee for “attending” classes (either live or “on demand”)  You can log into numerous classes led by cute, young, and way-too-fit instructors, who guide you through a workout while you watch on the big video screen attached to the bike.

If only riding my Peloton would make me look like her!

Classes range from at 10 minutes to 90 minutes long.  The instructor encourages you to move to the beat of the music and to adjust your resistance to increase or decrease the intensity (which simulates biking up and down hills).

This is not a commercial for Peleton.  While I have never been a big fan of exercise bikes (or real bikes for that matter), this is fun!  And it is some of the most intense exercise I have done.  Being competitive by nature, I try to keep up with that cute guy on the screen, and the cadence and resistence calls he makes.  Although not always successfull, I can feel myself improving and I have worked my way up to 20 minute classes, frequnetly ready to drop at the end of the session, but stronger for the effort.  I never went to the spin classes at the gym.  The thought of going to one of those classes in a hot sweaty room with 25 other people was terrifying, so I avoided them.  Now, in the privacy and comfort of my own home, I can choose whatever class I want, and quit if I want to, or scream at the instructor, or at myself,  when I can’t keep up.  The best part, is that I am getting the benefits of intense exercise that the experts now say will keep me going and going and going…….

WARNING:  When starting any form of strenuous exercise, please consult your doctor first.   This is NO exception.  In fact, you may want supervision by a trainer or Physical Therapist until you learn what you can do on the Peleton or any other resistance  training bike. It is much too easy to overdo it, which could lead to other problems.