Tremors on the Golf Course

This was originally published by Parkinsonsdisease.net

August 6, 2020 by Sharon Krischer

Some days you just know, before you even get out of bed, that it is just not going to be one of your better days. With Parkinson’s, those days occur with no rhyme or reason. The night that you got little sleep can be followed by a great day. Other days, for no reason that you can determine, your symptoms are worse than ever, your meds don’t work and you just can’t get anything done.

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Talk to anyone with PD and you will find that most of us are having more bad days than usual. Our lives have been so disrupted by Covid-19 that there is no normal anymore. After 5 months of restrictions, there seems to be no end in site. We work hard at finding ways to be socially connected to others while staying at home. But we are getting tired of all of those Zoom meet-ups. The novelty has worn off and it just doesn’t replace getting together in person. Continue reading here

Ending Parkinson’s Disease with author Ray Dorsey, MD

Join us for a book discussion on Sunday, August 23 at 10am PDT with Ray Dorsey, MD, David M. Levy Professor of Neurology, University of Rochester who will be discussing the new ground-breaking book Ending Parkinson’s Disease: A Prescription for Action. Learn about the environmental factors that put many at risk for Parkinson’s and what we can do about it now to bring an end to the disease.

Registration on Zoom is now full. You can also join us on Facebook Live Sunday at 10:00 AM PDT

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.

On “Being Mortal”

Sooner or later, we will all have to deal with the fact that having any progressive chronic disease, such as Parkinson’s, will require us to make major decisions about where we live, how we live and how much help we will need on a daily basis to live our lives the best way possible. As PD takes more away from us, will we be able to stay in our homes? And who makes the decisions?

I just listened to an amazing book titled “Being Mortal” by Atul Gawande. I had downloaded the audiobook because it had received so many accolades and was a best seller. Then conveniently forgot that I had it. The topic was too depressing and could wait. But then my friends started commenting on how good this book really is, so I decided it was time to bite the bullet and finally listen to it. And it was definitely worth it.

Throughout the book Gawande masterfully weaves stories of his patients with the hard realities of growing older and facing hard decisions about their care. The stories serve to illustrate how things can be handled better than they are in most of American society when it comes to aging and dying. We expect modern medicine to extend our lives, regardless of the quality of life. We treat our parents like children, placing them in nursing homes or other facilities, taking their lives away from them. In contrast, the extended families in many other societies care for their elders. The rise of nursing homes in the US gave us the option of no longer having to care for them ourselves, often leading to inadequate care and a terrible quality of life. Nursing homes became places where people went to die, not to live better when they could no longer take care of themselves.

Major changes in nursing homes began with a young doctor, hired to run a nursing home in upstate NY, who found it totally devoid of life. He was sure that something better could be done for the residents. Bringing children, plants and animals into the nursing home, especially 100 birds and dogs, in a hilariously told story, gave new purpose in life for many who had previously found little to live for.

On the opposite side of the country, in Oregon, the first assisted living facility was started by a woman who wanted to create a place as an alternative to nursing homes for her mother. A place where she would have her own small kitchen and bath where she could remain relatively independent, yet with many of the services provided by nursing homes available to her. Both of these visionary providers changed the way we care for our elderly.

Most importantly, Gawande shows that it is essential for us to listen to what those who are dying truly want as life grows more difficult. Shared decision making between the patient, doctor and the family has become much more common. Hear what the patient has to say and the choices you will ultimately have to make for them will become clear. Equally important, he talks about Hospice, whose sole duty is to make life more comfortable for the gravely ill, often increasing their quality of life and sometimes even prolonging their lives.

With his own father dying of cancer, Gawande asked what was important to him to live for after a difficult surgery. His father’s answer surprised him: he could not accept a life as a quadriplegic, he wanted to be in charge of his world and life. Later, after complications during surgery, the doctor came to talk to the family about whether to continue the surgery. What was the greater risk? Continuing the surgery or doing nothing. Gawande’s previous talk with his father had made it very clear how to proceed.

As I was reading this book, I started to think about how all of this would apply to a person with Parkinson’s. Eventually we will have to make decisions about where to live, what type of care is needed, and what decisions the family will have to make on our behalf. And most importantly, when a major medical decision needs to be made, what outcomes would be acceptable for us. Waiting to talk about it is no longer an option. We need to have an ongoing conversation with our families and care providers about our future now, not when it is too late to share in the decisions.

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.

 

Some good reads for Parkies

 I won’t sit back and allow Parkinson’s to destroy my world. I’ll learn the language, understand the context of my new reality, and then encourage others to thrive with me in this battle.   Tim Hague

Over the years, I have read a number of books about Parkinson’s Disease. Some written by the “experts”, some by people with Parkinson’s telling their stories and even a few written by people trying to sell a “cure” to unsuspecting people who are desperately looking for an easy way to “get well.”

There are many books written by People with Parkinson’s, many of whom also write PD blogs.  Some are good, some are dreadful. There is a saying about PD bloggers, that if you write a blog, you will write a book. I don’t necessarily agree with this because in today’s world of sound bites and short attention spans, many of us write about whatever interests us at the time we are writing a blog post. There is no narrative, just a collection of short essays (do they even qualify as essays anymore?) that don’t always fit together.

For those of you who were diagnosed a while ago, there may be nothing new here, but I would love to hear any suggestions for books that I have missed. For those of you who are newly diagnosed, I hope that this will be give you a good place to start learning about how you can live well with PD.

I have listened to a number of these books on Audible, especially when they have been narrated by the author. Hearing it in their own voice often lends subtleties to the narrative that you don’t get just by reading the book. I also like to listen while I am out walking. Sometimes you have to keep going just to finish listening to a good chapter, so it can help you get closer to your exercise goal at the same time!

By the way, these make great gifts for People with Parkinson’s and/or their Care Partners.

New in 2018

Perseverance: The Seven Skills You Need to Survive, Thrive, and Accomplish More Than You Ever Imagined by Tim Hague –  Hague was diagnosed with  YOPD at age 46 and wonPerseverance: The Seven Skills You Need to Survive, Thrive, and Accomplish More Than You Ever Imagined Canada’s Amazing Race race with his son, Tim Jr., 3 years later.  The highlight of the book is his blow by blow account of the Race, which he (and his opponents) never expected to win.  Hague is truly inspirational in talking about how he lives his life to the fullest with PD. Listen to it if you can.  Whether or not you have Parkinson’s,  you will be inspired to live your best.

Parkinson’s? You’re kidding me, right?: One woman’s unshakeable belief in overcoming a shaky diagnosis!

Parkinson’s? You’re kidding me, right?: One woman’s unshakeable belief in overcoming a shaky diagnosis!  by Sheryl Jedlinski.  Jedlinski was one of the firstbloggers that I followed.  Always informative, humorous and a good read.  A great book for the newly diagnosed.

The Best from Previous Years:

Brain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease by Jon Palfreman.

Brain Storms: The Race to Unlock the Mysteries of Parkinson's DiseaseStill my all time favorite.  After his own diagnosis with PD, Palfreman, an awardscience journalist, wrote this insightful book about the doctors, researchers, and patients  who continue to hunt for a cure for Parkinson’s Disease.  A must read for anyone with PD and their families.

Always Looking Up: The Adventures of an Incurable Optimist         Always Looking Up: The Adventures of an Incurable Optimist by [Fox, Michael J.]        by Michael J Fox.  I recommend listening to this book if you can.  Fox is always inspirational and you can almost see the twinkle in his eye as he narrates the book.

 

Parkinson’s Diva by Dr. Maria de Leon.  Fun, informative book for womenParkinson's Diva with PD by Dr. Maria who was a Movement Disorders Specialist before she was diagnosed with YOPD.  We met three years ago at the Women & PD Initiative conference sponsored by the Parkinson’s Foundation and have become good friends.  Maria tells it like it is, with lots of humor along the way.  I challenge you to not laugh when you read about her experience after a massage.

Parkinson’s Treatment: 10 Secrets to a Happier Life: English Edition and  10 Breakthrough Therapies for Parkinson’s Disease: English Edition by Dr. Michael S. Okun.  Two very good informative books written by the National Medical Director of the Parkinson’s Foundation.

I am looking forward to meeting more Parkinson’s authors at the World Parkinson’s Congress in June.  I hope to find some new favorites to add to my list.  The 7 books listed here should keep you busy reading until then. There are more listed under the heading  My Books and Things I Like   If you have a favorite that is not on my list, please let me know (preferably in the Comments so that others can see it).