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.

The Crane Dance Project for Parkinson’s

As the Soaring with Hope for PD Parkinson’s project took off, one of the team members for that project, Clara Kluge came up with yet another way to engage People with Parkinsons (PwPs) for the World Parkinson Congress(WPC). Because she loved to dance and was involved in dance classes for PwPs, she envisioned having PwPs and the community at large create dances using cranes as the theme. Her dream became the PD Crane Dance Project. David Leventhal, the co-founder of Mark Morris Dance Group’s Dance for PD® Program, became her mentor on this endeavour; he calls Clara “the force behind this project.”

And she truly was a force, inspiring so many to participate in the project. Clara invited People with Parkinson’s from around the world to submit a 2 minute video of an original dance inspired by the origami cranes that she folded and sent to those who requested them. Expecting to receive about 50 videos, she received 147 from 17 countries. This added up to a whopping total of 5 hours of video! Over 1800 dancers participated from around the world. The two videos were shown on a continuous loop at the WPC at the Soaring with Hope exhibit and the Dance for PD® Program Booth.

Some of the spin offs from the project are that it inspired dancers to:

  • Learn how to fold origami cranes
  • Write poems about the experience
  • Dance more, move more
  • Tap their inner creative spirit
  • Make stronger connections
  • Feel connected with other dancers from around the world
  • Collaborate with fellow dancers
  • Not feel alone
  • Get excited about doing something positive for themselves
  • Get a tattoo of an origami crane

This project was such a success that Clara is looking into making a documentary of the whole experience with the many dancers and dance groups who participated in the original creation of this project. 

Origami Dance
Japan Parkinson’s Disease Association Fukuoka
Invertigo Dance Theatre, Los Angeles, California

To view more of these inspiring dances, go To YouTube and search Crane Dances Parkinson’s and a number of dances will appear.  I will keep you posted when and where you can see all of the dances.

10 things that can help you cope with your new diagnosis of Parkinson’s Disease

Many bloggers write about what you can do to cope with a new diagnosis of Parkinson’s Disease. We all have a different take on the issue, so if you have just been diagnosed, look for other blogs with similar titles. As they say in the Parkie world, we are like snowflakes, no two of us are alike. Each one of us has different symptoms and responds differently to medications and therapy. By reading several different blogs, you will get a broader perspective about your new companion, PD, which will be at your side for many years to come. So here are some of my suggestions for living well with Parkinson’s.

You have just been diagnosed. You walk out of the doctors office in a state of shock and the reality of it doesn’t sink in until after you get home. So many unanswered questions and your next appointment is 6 months or more away. What can you do?

Well, there are actually a lot of things that you can do before you see your doctor that will help you understand your new constant companion and to feel better about it. Before you do anything else, try to make a follow up appointment sooner if possible. Make sure that you bring someone with you who can help ask questions and take notes for you. Prepare a list of questions to take with you. We all forget to ask key questions if we don’t write them down. Click here for a worksheet from Health Monitor that you can use (scroll down the page to get to it).

Twitchy Woman’s 10 recommendations for the newly diagnosed:

1. Exercise. I can’t stress this enough. Exercise has been shown to be the most effective way to combat the effects of PD. If you are already exercising, good for you. See if you can increase your level of activity – the more you push yourself, the better the results. If you have not been exercising, start slowly. Walk around the block. Add distance and speed as it becomes more comfortable for you. Add different types of exercise to your routine. Varying what you do on a daily basis is good for your brain and your body. Most importantly, find what you enjoy doing. If you don’t like it, you won’t do it. My exercise routine is a combination of Boxing for PD, regular yoga classes, tennis and a Peloton bike.

2. Continue to do what you did before your diagnosis. PD may eventually slow you down, but for now, don’t let it stop you.

3. A good diet. Check Dr. Laurie Mischley’s website for recommendations for a Parkie diet.

4. Get out of the house. Loneliness is the #1 cause for a rapid decline with PD.

5. Find a mentor with PD. Ask your doctor if he/she can recommend someone living well with Parkinson’s who you can talk to. We have all been in your shoes and understand what you are going through. A mentor can answer your questions and be there for you when you need a friend.

6. Go to a support group. This may not be your thing, but try it anyway. There are a lot of different types of support groups out there and you may find new friends with PD who will become your support system.

7. Find a class for Parkies – boxing, dance, yoga, etc. The best way, in my opinion, to find your way through the maze of PD. The people you meet in these classes will become an important part of your support system. They know what you are going through. It also keeps you from being isolated (see #3) and gives you something to look forward to.

8. Go online and look for a few blogs and websites that you can trust and relate to. Beware of those trying to sell you a “cure”. Some good websites to start with are Michael J Fox Foundation, Parkinson’s Foundation and Davis Phinney Foundation. For a list of blogs I like, click on the Resources tab.

9. Read a good book about PD. Click on the My Books and Things I Like page (above) for recommendations. Two books I will recommend you start with are Parkinson’s? You’re kidding me, right? One woman’s unshakeable belief in overcoming a shaky diagnosis! by Sheryl Jedlinski andBrain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease by Jon Palfreman. And order Every Victory Counts” from the Davis Phinney Foundation. It is free and a good resource.

10. Go to an educational program about PD. The 3 foundations above all sponsor educational programs, as well as The American Parkinson’s Disease Association and local Parkinson’s groups.

I hope that this will help. The most important thing for you to know is that you are not alone on your journey with PD. Don’t hesitate to reach out to me or to others with Parkinson’s Disease. We are there to help you.

Reaching a Milestone and an Inspiring New Book to Read

Look at you.  You’re in Spain.  You’re walking out here on the Meseta.  How many people are doing this?  How many people with a chronic disease do you see out here today?……Do something good, Carol.  Find something good to do with it.”    From The Ribbon of Road Ahead

 

Twitchy Woman has reached a milestone.  This is post #201 ! ! !   When I started this blog, I never expected it to  continue for as long as it has.  And what a ride it has been. Somehow, I have posted almost weekly in the last 4 years, and am honored to have made Best Parkinson’s Blogs lists at least 6 times (see the sidebar).  Other opportunities for me have come up as a result.   I want to thank everyone of you who has been following me, whether it has been for 200 posts or just 1.  My initial blogpost was seen by just 15 people.  There are now over 1500 followers.  Your support and encouragement have kept me going.

On my way to Kyoto!

Speaking of opportunities, as you may know, I submitted an abstract to the World Parkinson’s Congress.  At medical meetings, researchers are asked to submit abstracts (a brief description of their research study).  If their abstract is accepted, they will then create a posWPC2019_LOGO_246x153.gifter based on their research for display.  For the WPC, People with Parkinson’s (PwP’s) were also encouraged to submit their ideas (abstracts) for living well with PD.  There will be hundreds of posters on display throughout the conference.  If you are attending the WPC, look for me on Wednesday, June 5,  between 11:30-1:30.  I will be at my poster in space 649 to talk about it and I would love to meet you.

Thank you to all who responded to my survey for this project.   I cannot give you the final results until after the WPC, but the most important things for someone to live well with PD are Exercise and Getting Enough Sleep.  Neither of these should be a surprise for anyone with PD.  If we don’t have a good night’s sleep, the daytime fatigue can be debilitating.  And that fatigue manifests itself in many ways.

As far as Exercise is concerned, the more you do, and the more intense it is, the better.  I had hand surgery last Thursday and have not been able to exercise since.  I am already noticing, 5 days later, that my tremor is acting up more.  We need to think of Exercise as medicine, and I have not been taking my medicine.

The Ribbon of Road Ahead

And speaking of exercise, I just finished reading an inspiring new book by fellow PwP, Carol Clupny titled The Ribbon of Road Ahead.  After her diagnosis of Parkinson’s, Carol was determined to walk The Camino de Santiago. If you have traveled in northwestern Spain, from Pamplona to Santiago de Compestola, you may have seen hikers walking along the route marked with seashells pointing the way.  Pilgrims from all over the world come to walk on this grueling 500+ mile network of pilgrim routes, from Southern France to Spain, for many different reasons, often hiking through rocky mountain passes.  The Way, as it is called in the movie with Emilio Estevez and Martin Sheen, is difficult for anyone without disabilities, but Carol was not going to let that stop her.  With her husband, son and other family members and friends at her side, she recounts the obstacles she faced as well as the accomplishments.

Carol went back 2 more times to walk parts of the trail with other women whom she had met along the way.  She has also biked across Iowa 3 times with her husband on the annual 450 mile RAGBRAI (The Register’s Annual Great Bicycle Ride Across Iowa) with the Pedaling for Parkinson’s team.  Much of the ride was done on a tandem bike named Grepedo.  She did all of this before her DBS surgery a couple of years ago. The final chapters recount her surgery and the small successes that were the beginning of regaining her life before PD.  Her story is inspiring, and shows that determination and grit can help those of us with a chronic illness get through some of the more difficult times.  Carol has indeed done something good by sharing her story with us.  Look for Carol at the WPC in Kyoto if you are there.

 

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