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).

 

The Twitchy Woman Unscientific Study, Dan’s Progress and More

I know you are all waiting eagerly for the results of the very unscientific study that was posted a couple of weeks ago about dominant hand and the start of Parkinson’s symptoms.  As of two days ago there were 299 responses in various forms.

The results were interesting, but defiinitely not conclusive.  Those whose symptoms started on their dominant side accounted for only 52%.  The rest had symptoms begin on the opposite side, or occasionally both sides at once.  I would love to talk to someone who would like to collaborate on this on in a more “scientific” way.  Please contact me if you are interested.  But in the meantime, here are the results, simplified because the original survey was too confusing, even for me, the designer of it:

299 responses

156 or 52%  dominant side

137 or 46% non-dominant

6 or 2% other, both sides, stroke residual

Interesting trivia – 3 reported being naturally left-handed but forced to write with their right hand in school.  Their tremors started on left side.  I counted these as starting on the dominant side.

One of the things I learned is that most people preferred to just respond with a yes or no on Facebook instead of using the  Survey Monkey link provided, and later the WordPress Poll. I changed to the much simpler poll when I saw how people were responding.   Since this post was shared numerous times on FB (over 140!) I have no way of knowing how many people actually responded.

So the most important thing that came out of this is that Parkies don’t pay attention to instructions!  A simple yes or no was all that you wanted to give.   And some of the answers didn’t even make sense!

Somehow there has to be a way to make use of social media to reach out to large numbers of people and get the data that you want.  It can’t be too complicated, for it seems that our reduced attention spans don’t allow for more complex answers.

Dan’s Progress

Dan continues to do very well with the Path Finder shoes.  When he turned them over to Vince, he felt a definite increase in this freezing episodes.  Vince tried it out with his PT, but it did not work for him, unfortunately.  He returned the shoes to Dan, who is now a very happy camper.  I have asked him to write about his experience so that I can share it with you here in a future post.

A New Book for Parkie’s

 One of the first blogs that I followed after my diagnosis was PDPlan4Life which was written by Sheryl Jedlinski and Jean Burns.  Sheryl’s humorous writing and Jean’s illustrations gave me hope that I could live well with PD.  When I heard that Sheryl recently published Parkinson’s? You’re kidding me, right?: One woman’s unshakeable belief in overcoming a shaky diagnosis! , I immediately ordered the book.  I was not disappointed.

With a blend of serious information for the newly diagnosed so newly diagnosed) and self-deprecating humor used to illustrate her points, Jedlinski has written a very enjoyable book that belongs on every Parkie’s bookshelf.  We can all identify with some of the situations that she has found herself in as a result of living with PD.

Finally, I am in Israel for 2 weeks, mostly on vacation, but some PD related business.  There is some great research going on here which I hope to be able to share with you in my next post.

Books, Laughter and Exercise

I love to read a good book.  I have had the opportunity to read two very different books in the last few weeks by authors who have Parkinsons’s.  At the World Parkinson Congress, I was fortunate to hear author Alice Lazzarini talk about her book Both Sides Now: A Journey from Researcher to Patient.  Her story is compelling and I could not put the book down.  Shake Rattle and Roll With It:  Living and Laughing with Parkinson’s by Vikki Claflin, is a very different take on PD by a humorist blogger.

At the WPC, Lazzarini told us that it all started with her shadow.  Walking down the street one morning, she saw that her arm was not swinging in her shadow.  A Parkinson’s researcher for years, she knew that a reduced arm swing was an early sign of Parkinson’s.  The next morning the she noticed once again that her arm was not swinging in her shadow.  She was reminded about how medical students typically diagnose themselves with each disease they study.  She said “I must be too immersed in Parkinsons”

How could this be?  She went to work and confided in a co-worker who had been diagnosed two months earlier.  They cried together at the irony that both PD researchers were diagnosed with Parkinson’s as they were making groundbreaking discoveries for that same disease.

In Both Sides Now: A Journey From Researcher to Patient Alice Lazzarini tells the story or her illustrious career and about her diagnosis of Parkinson’s Disease.     She recounts difficulties faced by women in the workplace, especially in academia, at that time.  Many years later, encouraged by the visionary doctor she worked with, Roger Duvoisin, she finally pursued her PhD.  In 1996, her groundbreaking study with the Contursi family from Italy led to the discovery of the alpha-synuclein mutation, PARK1, and revolutionized the field of Parkinson’s research.  Yet, when confronted with the early symptoms that she knew pointed to PD, she did not seek medical treatment.  It took almost a year for her to finally see a colleague for an evaluation and the confirmation of her worst fears.

Like most of us, she tried to hide the tremor that appeared early on. When she hosted an advisory board meeting in London for Parkinson’s specialists several months later,she began to see PD from the other side – the patient’s side.  Statements made by other doctors that were not offensive before, now bothered her immensely.  But the biggest issue that confronted her was how could she remain a professional and be a patient at the same time?

In spite of her amazing career, she faced the same issues that we all do when we hear those four terrible words “You have Parkinson’s Disease”.  We have gone through denial, hidden our symptoms, and pretended that all was ok, when inside we were terrified.  We did not want people at work to know because it could jeopardize our careers.  Dr. Lazzarini was no different, and that is why her story is so easy to relate to.

Once she finally came to accept her disease, and her fate, Dr. Lazzarini retired from research and wrote her story for herself.  Fortunately she decided to share it with others who are living with Parkinson’s, so that we can better understand this disease.  Her story is an inspiration, and her discoveries have revolutionized the approach to Parkinson’s research.  Because of this amazing woman, we all have hope for a future without Parkinson’s.

In contrast, Shake, Rattle & Roll With It: Living and Laughing with Parkinson’s by Vikki Claflin, who has been writing about her experiences with Parkinson’s in her blog, Laugh Lines, gives us a very different take on PD.  There is a saying that if you write a blog about Parkinson’s, you will eventually write a book about it.  I have read some books by bloggers that are just awful.  But this one I recommend highly.  At times, I think she had channeled me and was writing about my experiences.  She sees the same elephant in the room that I have seen and written about.  I found myself nodding in agreement with her observations and laughing hysterically at some of her antics.  There is no embarrassing PD story that is off limits.   Any woman can relate to her description of shimmying into Spanx whether she has PD or not.  (If you don’t know what Spanx are, imagine trying to stuff a comforter back into that plastic bag it came in.  You just can’t do it!)  Her 20 ways Parkinson’s tremors come in handy is a classic.  And of course, when all else fails, there is always a glass (or bottle) of red wine with Milk Duds to get through the worst days.  But underneath it all is a serious look at living with a chronic disease and how one woman copes with it by looking at the world through humor.  Her final advice to us is Even without a cure in your lifetime, you can fight a good fight.  If you can laugh at the frustrations, epic fails and embarrassing moments, you will live a life made up of joyful moments and you have won the fight.

Finally, for those of you who have read Alex Kertin’s Goodbye Parkinson’s, Hello life!: The Gyro-Kinetic Method for Eliminating Symptoms and Reclaiming Your Good Health, he just announced today that there is now a 30 minute exercise video that you can download. Go to  My Exercise for Parkinson’s  with Michael Wiese, the co-author of the book.