Gone to Maui, Vacation from Parkinson’s!

I went to Maui to stay a week and remained five. I never spent so pleasant a month before, or bade any place goodbye so regretfully. I have not once thought of business, or care or human toil or trouble or sorrow or weariness, and the memory of it will remain with me always.

Mark Twain

We are on our way home from a wonderful week in Maui. Mr. Twitchy and I like to go in February to see the whales that migrate there every winter from Alaska to have their babies. As Mr. Twitchy says, the whales need him to direct traffic every few years so that they don’t get lost.

Hawaii, especially Maui, can be magical. It was raining when we landed, but the rain gave us some interesting rainbows as seen from above. Have you ever seen a rainbow on the ground? Rainbows will pop up where you least expect them. Even horizontal rainbows in the mountains.

We wake up early every morning, eager to go out to the beach, which we never do in Los Angeles. I went to a yoga class at the beach at 7:00 am most mornings. I could not help watching for the whales while doing down dogs and chaturangas. Some mornings the Yoga instructor would lead us on guided meditations, with the trade winds and the sound of the waves cocooning us. I looked up to see Monarch Butterflies flitting around in the trees above. It doesn’t get much better than this.

Sunset yoga was also offered a couple of afternoons, so of course I had to go to that as well. Sunsets can be spectacular there, so why not. The experience was equally wonderful.

But the most important part of being there, stated by Mr. Twitchy, is that we can sit at the pool or the beach all day, watching the waves and hoping to spot whales. At home, neither of us has the patience or desire to do anything like this.

Sunset with Mr. Twitchy

And the end result, I feel great after a week here. So good, I even forgot to take my meds with me yesterday when we went out for lunch and I was fine. Very few off times or noticeable tremors. I went to a painting class one afternoon at an art gallery in our hotel, and had no trouble drawing or using paint pens. I brought colored pencils and papers with me, like I do on most trips, hoping to do some drawing on my own. This time I actually did it, unlike many times before. We went kayaking and snorkeling and even went on an outrigger canoe. My husband drew the line for me on Stand Up Paddleboarding though. That just was not a great idea for someone with Parkinson’s. I had to agree with him on that one.

Whales!

We saved the best for our last morning there. Although February is peak season for whale sightings, there were not many this past week. Most of the whales we saw were too far out in the ocean to see much more than their spouts and splashes as they dove under water. On our last morning we went kayaking again from our hotel beach. We were almost ready to give up when two humpback whales surfaced very close to our group of kayaks. They would go underwater and pop up somewhere else. Just as we were starting back to the hotel, they emerged not more than 20 feet in front of us! Two of them swimming in tandem. Wow! Unfortunately, no pictures because it happened so fast.

Yes, Maui does heal everything as this t-shirt says. It was almost like I took a vacation from Parkinson’s for the week. And it was wonderful.

I believe Hawaii is the most precious jewel in the world.   

Don Ho

Twitchy Woman this month:

It is a big month for Twitchy Woman with 2 podcasts coming out in the next two days, speaking at a conference in Fresno, CA and my first post on Parkinsonsdisease.net.

2/18 Podcast DX podcast

2/19 When Life Gives You Parkinson’s podcast

2/22 Conference speaker at  Better Lives, Together: Fresno Parkinson’s Summit

Parkinsonsdisease.net What Keeps Me Motivated While Living with Parkinson’s?

The Mighty A Letter to Ozzy Osbourne After His Parkinson’s Diagnosis

Photos!

Photos by Sharon Krischer, February 2020

Grit and determination can help you get ahead when you have Parkinson’s

“Singing a happy tune stops you from thinking bad thoughts. Next time you feel a panic attack coming, try singing, humming or whistling, or even just smiling”

Carol Clupny

That was just one of the insightful comments that author Carol Clupny shared with us today at a meeting for women with Parkinson’s. Carol was diagnosed with Parkinson’s 12 years ago. Like many of us, Carol did nothing, spending much of her time at home in a comfortable chair for awhile. One day she decided to take her life back by forcing herself out of her easy chair and walking to the mail box. The next day she  crossed the street. She continued walking and a year later she walked the Camino de Santiago*, a 500 mile trek across northern Spain. That first walk was the beginning of her Adventures with Parkinson’s. She kept returning until she had walked over 1000 miles.  Carol then went on to do things, mostly physical challenges, that she never would have considered, even before her diagnosis.

The Ribbon of Road Ahead

Last spring, Carol published her book The Ribbon of Road Ahead, which recounts 3 of the 4 times that she walked on The Camino in a 4 year span, as well as her 4 rides across Iowa on a tandem bike RAGBRAI (Register’s Annual Great Bicycle Ride Across Iowa) bicycle ride, and her experience having DBS (Deep Brain Stimulation) surgery to relieve her PD symptoms.

After reading an article on cycling as it mitigates some of the symptoms of Parkinsons, Carol and her husband Charlie started cycling and have ridden the RAGBRAI four times.  First on a borrowed tandem they nicknamed THE BIG YELLOW MOSQUITO EATER and in three subsequent rides on their own University of Oregon green and yellow colored tandem GREPEDO.

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Carol and her hiking backpack
photo by Sharon Krischer

In the last 10 years, Carol has been determined to beat PD what ever way she could. Before the onset of PD, Carol and her husband Charlie would go horseback riding, hiking in the nearby mountains in eastern Oregon, and traveling. Sometime after her diagnosis, everything changed. Carol sought out more and more difficult challenges, with international travel, long distance biking and hiking. And now she has shown how grit and determination to do something enabled her to become, in a sense, superhuman. Doing things she never would have dreamed possible such as getting involved in the Parkinson’s community, writing a book, and public speaking.

We talked about that during our time together. So many people we know with PD have taken on challenges that the average person would never dream of. Someone like fellow person with PD, Jimmy Choi, and his exploits on American Ninja Warrior is just one extreme example. Were we always like that or is it something new after our PD onset? What is it about Parkinson’s that many of us approach life in this way? Is it the lack of dopamine? Our medications?

Carol and Charlie on the Road

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Mr. Twitchy, Carol, Sharon and Doolie
photo by Charlie Clupny

Carol and Charlie pulled into our driveway on Saturday with their new 22 foot camper van Doolie. This has replaced the old camper that they used to get to and from Iowa for the bicycle ride. With the van, they are traveling in comfort, often for weeks at a time, all around the US. For their current book tour, Charlie even had window clings made to fit the windows, advertising Carol’s book! Now that is dedication.

Carol and Charlie, I have one suggestion for you. Since the RAGBRAI starts when you dip your back bicycle tire in the Missouri River and ends when you put your front tire in the Mississippi, why don’t you shorten the ride to just a few hours by starting on the Missouri just west of St. Louis, my home town, and finish 30 miles later at the Mississippi where the two rivers meet. Mr. Twitchy and I would join you on that ride!

* The Camino de Santiago (the Way of St. James) is a large network of ancient pilgrim routes stretching across Europe and coming together at the tomb of St. James (Santiago in Spanish) in Santiago de Compostela in north-west Spain.

The Ribbon of Road Ahead is available either on Carol’s website or on Amazon.

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.