Tim Hague – Twitchy woman

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 won 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.

Parkinsonâs? Youâre kidding me, right?: One womanâs 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 Disease Still 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 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 women Parkinson'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).

Sometimes it seems like Parkinson’s Research is a bit like Target Practice. If you try to come at it from a lot of different angles, eventually something is going to hit the bullseye. It is almost impossible to keep up with all of the different research projects looking for a cure or even just a way to slow down and stop the progression of PD.

Some examples from this past week alone include fish that sense magnetic fields, effect of different frequencies of DBS on gait, and chaperone proteins. Huh? Someone please interpret!!!!

This study from Michigan State University (MSU) : A fish that can sense the Earth’s magnetic field while it swims could help scientists understand how the human brain works and eventually unlock strategies to help control movement impairments in patients with Parkinson’s disease and other neurological disorders, a study reports.
Low-frequency subthalamic deep brain stimulation (STN-DBS), but not high-frequency STN-DBS, reduces freezing of gait in Parkinson’s patients while preserving their ability to simultaneously process motor and cognitive information, a recent study shows. The study, “Decreasing subthalamic deep brain stimulation frequency reverses cognitive interference during gait initiation in Parkinson’s disease,” was published in the journal Clinical Neurosphysiology.
Low levels of a specific chaperone protein might be implicated in the development of Parkinson’s disease and Lewy body dementia, according to new research at University of Alabama at Birmingham. Researchers investigated the role of a protein called 14-3-3θ — a type of protein that can assist other proteins to assume a proper shape. “The study suggests that 14-3-3θ may be a suitable target for efforts to slow the progression of neurodegenerative diseases, although more work is needed,” according to Talene Yacoubian, an MD and PhD, associate professor in the Department of Neurology at UAB.

Other interesting stuff:

I just finished listening to
Perseverance: The Seven Skills You Need to Survive, Thrive, and Accomplish More Than You Ever Imagined
by fellow WPC blogger Tim Hague. He tells his fascinating story of growing up as a bi-racial child in a large, warm adoptive family, his Parkinson’s disease, how he and his son, Tim, Jr. got into The Amazing Race Canada (Season 1) and finished in first place, and more. I really enjoyed the book and finally met Tim last week at the Davis Phinney Victory Summit in LA. Well done, Tim!
And in the “what was I thinking department“, Mr. Twitchy and I went to the Fox Foundation’s Parkour 4 Parkinson’s event in LA a few weeks ago. I am not sure what got into me, but I had to try the course. According to PD Ninja, Jimmy Choi, there were only 4-5 of us Parkies there who actually tried it. Mostly it was agile kids and teenagers having a great time. (watch for the young girl behind me on the ropes). I should have known better, but once I was there, any brain cells that I still have left apparently forgot that I am not in Middle School. Here is the video that Mr. Twitchy took of my attempt at being a Ninja Warrior!