Eight little things you can do to improve your life with Parkinson’s

Living with Covid-19 quarantines has challenged our daily routines, and with that, our individual and collective health. And sanity. One of the goals of beginning Sunday Mornings with Twitchy Women three months ago was to help us find ways, frequently little ways, to better meet the challenges of living with Parkinson’s disease. Thanks to our presenters we have been able to do just that. Each of them has shown us that we are resiliant and can adapt to the challenges that confront us. Almost all of these tips can be useful for everyone.

Arrowhead® Natural Spring Water, 16.9 Oz Bottle, 40 Bottles/carton
  • Find new ways to exercise. We all know the importance of daily exercise to fight the disease, and we got to experience several different types of exercise. Many of our favorite exercise classes, such as Jen Parkinson Iljin’s Neuroboxing and Lisa and SteF’s PD-Connect are now available online, either through live Zoom classes or Youtube videos. Not being able to go to the gym is not an excuse to sit around and do nothing. Two useful tips: you don’t have hand weights? Use filled water bottles instead. No yoga strap? Use the sash from your bathrobe.
  • Worried about going back to the gym when it reopens? The Youtube exercise/meditation/mindfullnes videos you have been watching will still be there, as will the recorded exercise classes on many different websites. There is a lot to choose from and this option will not go away soon.
Fresh Lemons, 3 lbs. (900-00036)
  • Maximize your Levadopa. Lemon juice helps your body absorb Levadopa better. According to Dr. Laurie K. Mischley, studies have shown that people with PD do not make as much stomach acid as needed for proper digestion and absorption of nutrition from food and meds. Adding either 500 ml powdered Vitamin C or 30 ml Lemon Juice will help make more Levodopa bio-available, making it 25-35% more absorption and a smoother delivery of the Levodopa.
Should You Stop Taking Fish Oil?
  • Work on your Omega 3s. Can’t take Fish Oil? Look at Algae oil — not Flax oil — as a substitute. Better yet, get your blood levels of Omega 3 Fatty Acids checked. If normal, you won’t need to take either. As Dr. Mischley pointed out, many people who are vegetarians have normal levels without taking Fish Oil.
  • New ways to mindfulness. Have you tried mindfullness and meditation with no luck? According to Kat Hill, who brought us Sketchbook Journaling, sketching what you see is a mindfullness practice, which reduces the stress response. Gratitude Journaling can also form new neural pathways. And Life Coach Kristie Scott told us about Evolution Cards. These give you a “focusing word” with an insightful lesson and a challenge to inspire positive action followed by words of encouragement. The point is to use your chosen word to start a new evolutionary journey every day.
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  • Taiko Drumming! This is a great way for a person with PD to exercise. It includes large amplitude movements, full extensions, trunk rotation, variation of volume and tempo, sequencing, memory and cognition and vocalizations. Special thanks to Sydney Shiroyama and Naomi Estolas for this fun presentation.
  • Know where to go for PD resources. Kristie Scott also gave us a comprehensive list of resources for people with Parkinson’s.
Red High Heel Shoes – St. Johns Builders Council
  • Be silly; have fun. According to (self-described) “Parkinson’s Diva,” Dr. Maria de Leon, do just about anything that will put a smile on your face; a Tiara and Red High Heel shoes will make you feel a lot better, even if you can’t walk in those shoes!

Sunday Mornings with Twitchy Women are webinars on Zoom for Women with Parkinson’s Disease, held every other Sunday morning at 10 am Pacific Time. To maintain privacy for this group, we ask that care-partners and family members not attend unless an event states that registration is open to all. If you have any questions, please contact twitchywoman18@gmail.com.

Next up: Sunday, June 28 Living well with PD in Covid-19 era 

Movement Disorders Specialist Indu Subramanian, MD, UCLA and the VA, (my wonderful doctor and PMD Alliance superstar!) will talk about living well with PD in the Covid-19 era including the importance of social connections, mindfulness and yoga to alleviate some of the stress we are all feeling during this unsettling time. Watch her recent talk on PMD Alliance with Dr. Ray Chaudhuri about pain and PD. Register here for this program.

To see what else is scheduled, click on Sunday Mornings with Twitchy Women at the top of this page.

Have a great week!

Stay Safe, Stay Well and please Stay Sane!

How Coronavirus is affecting Women with Parkinson’s

“Life isn’t easy”: how coronavirus is affecting women with Parkinson’s An edited version of this post appeared in Parkinson’s Life today.

One of the first things that I noticed after being “sheltered at home” was that not having a daily schedule disrupted my exercise routine.  As a person with Parkinson’s, that had a greater effect on how I felt than anything else.  Some of my symptoms got worse.  I wasn’t sleeping well and within a few weeks, the days started blending together.  Some days I woke up and literally did not know what day it was.  

Eventually I was exercising more than before

Image result for zoom images

As the weeks went on, and through the magic of Zoom, my boxing for Parkinson’s class and my yoga classes were meeting in the virtual world,.  Eventually I was exercising more than I had been and my endurance increased. 

But, though it did help, Zoom is not a complete substitute personal interaction. I miss being with other people, going to the gym, dinners out and going to movies and theater, my manicures, haircuts, shopping, and all of the things that I do with my friends and family.  Classes and meetings on Zoom are great, but it is not the same as being together. 

We have been reading to our grandchildren through video chatting

There are a few really good things that have happened because of Covid-19.  We have been reading to our grandchildren through video chatting and have even played games with them.  A quick on line search will show you many free resources such as the one shown here. We may not be able to hug them, but we can have some special times with our grandchildren.  We have also had family video chats where our grandchildren in Los Angeles and Chicago have been able to see and talk to each other.  These activities help reduce the anxiety of isolation, of being cooped up at home.

Younger women (and men) who may be working remotely from home now, and not just those with Parkinson’s, now have the additional burden of balancing work and taking care of their family full-time.  It is a lot to bear. When working at home, it is difficult to do their job, while also making sure their children are doing their schoolwork, or are otherwise occupied and cared for. It can be overwhelming.   There is precious little time to take care of themselves, increasing  stress levels that affect how they feel each day. 

A big thing that I and others find missing is the ability to reach out to other women with PD.  With the stay-at-home isolation, we have lost our personal connection to others with PD.  It has been shown that women, more than men, really need the support of their PD peer group.  We go to support groups to make connections with other women.  The support for one another in our community is tremendous.

 Sunday Mornings with Twitchy Women

Here, too, while we can’t get together physically, we can find  find partial substitutes in the virtual world.. In that spirit, we took the non-traditional local support group that I had been running and made it available women with Parkinson’s literally everywhere;  in March we started   Sunday Mornings with Twitchy Women  to reach out to women with Parkisons around the world.  We meet every other Sunday morning at 10:00 Pacific Time for about an hour, with a different speaker/topic each session.  The feedback has been very positive.  It is helping  women fill a need to talk to others with PD AND giving them a respite from some of the stress brought on by the Pandemic.  It’s not the same as getting together physically, but it goes a long way towards making us feel better.

Sunday Mornings with Twitchy Women can be found at https://twitchywoman.com/events/

PD Heroes For Parkinson’s Awareness Month

A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.

Christopher Reeve

This month, April, 2020, I will be sharing the stories of some People with Parkinson’s (PwP’s) who are heroes for many of us. In February I wrote about A Different Kind of Parkinson’s Hero, highlighting several women with PD who have Parkinson’s who are making a difference for others in their communitites.

Since then, I have received the stories of other “PD Heroes” who will be featured this month for Parkinson’s Awareness Month. As I said in February, I think there are two types of PD Heroes. The Parkinson’s Super Heroes who have gone above and beyond anyone’s expectations to accomplish things that would be extraordinary for someone without PD and the Real Life Parkinson’s Heroes who make an impact on others in their local communities in quite wonderful ways. We need both types of heroes in our lives to combat the old image of PD – the drawing of the hunched over old man, shuffling his feet and shaking. I won’t even reproduce that drawing here because we really want to forget that it exists. You will meet people here in the coming weeks who project a totally different image people with Parkinson’s. They are terrific people living terrific lives.

What I find interesting is that for all of our heroes is that their journey started much like everyone else. Many were misdiagnosed at first, often spending the first few months or even years after hearing those 3 dreaded words “You have Parkinson’s” in a state of shock. Some, like Jimmy Choi, it took several years and a wake up call in their lives, (he fell down the stairs carrying his son), to actually get out and start doing something to improve their own quality of life. Eventually, their passion for doing something that they enjoyed, led them down the path to doing something amazing. Today’s hero, Jon Pawelkop, who I would put in the Super Hero category, took his love of exercise and Rock Steady Boxing and turned it into an incredible journey that took him to every state in the US. This is his story, as shared by his wife, Pat Pawelkop.

Jon Pawelkop – Parkinson’s Super Hero

Jon Pawelkop, from Tampa, Florida, was misdiagnosed with essential tremor in 2014, and correctly diagnosed with Parkinson’s Disease in February of 2016.  The first year was one of coming to terms with what it could mean for him, a difficult time as he was always very active, athletic, and loved to live life to the fullest. He was very afraid of losing all that. 

Exercise and Rock Steady Boxing were the beginning of finding his way back. Jon pushes himself every day, to work hard, be active, and be a role model for others.

Jon’s Journey

In May 2018, Jon decided to promote Rock Steady Boxing and share its benefits with others by creating a personal challenge. Jon’s Boxing Grand Tour Fighting Parkinson’s was started. His goal was to visit a RSB affiliate class in every state, work out with the fighters there, and share a word of encouragement wherever possible. In the 13 months that followed, Jon completed his goal and visited more than 60 RSB affiliates, traveling to every state, and working out with the Fighters at a RSB class.  He did most of this while flying standby, not always an easy task! 

Stop #50 Hawaii
Jon is on the left wearing the orange lei

The last state was Hawaii, where Jon visited a class in Hilo, on the Big Island of Hawaii. He combined this trip with the World Parkinson’s Congress in Kyoto, Japan, which he and Pat attended together. He had the great privilege to help represent RSB while at the WPC in Japan, where he helped RSB coaches from Japan, Norway, Italy and the USA as they demonstrated their lessons for the WPC attendees. It was a great opportunity and a highlight of their journey.

Along the way, Jon also visited a RSB class in Ede, Netherlands, in conjunction with a previously planned vacation to Germany. He plans to continue to visit classes as wherever his travels take him. 

Make It Mean Something, MIMS

Jon was recently appointed as an Ambassador for the World Parkinson’s Congress 2022 in Barcelona Spain. He is excited to see where this new stage of his advocacy journey will take him. He loves meeting people who share his fight, and encouraging others to Make It Mean Something, MIMS, which he has certainly done.

For more of Jon’s story, and background you can reach Jon at jonpawelkop@gmail.com or Pat at patpawelkop@gmail.com Jon also has a short Ambassador bio on the World Parkinson’s Congress 2022 website.    
Facebook –   Jon Pawelkop (personal page), Jon’s Boxing Grand Tour Fighting Parkinson’s (group page)

Real heroes are all around us and uncelebrated.

Peter Capaldi

Who are your Parkinson’s Heroes?

Do you know someone who is a Parkinson’s Hero? I would love to share their stories here. Send stories and contact information to me at twitchywoman18@gmail.com.

Sundays with Twitchy Women

Don’t forget to sign up for our next Zoom meeting taking place on Sunday, April 5 at 10 am Pacific time.

Our guest will be the hilarious Dr. Maria de Leon, author of The Parkinson’s Diva. Wear your Diva bling and break out the Prosecco for our Diva Party. We will talk about maintaining our “Diva-ness during this time of social isolation, oops, I mean social distancing.

You will need to register from now on when we use Zoom for these meetings.  Click here to register for the Diva Party. 

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.