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.