New Book, ‘Possibilities with Parkinson’s: A Fresh Look,’ Shares What I’ve Learned About PD
Neo, Dr. C’s imaginary talking neocortex, sees the delivery truck headed down the driveway toward the house, followed by a loud knock at the door minutes later. With excitement, he says to Dr. C and Mrs. Dr. C, “I think the copies of your book have arrived!”
Neo brings the box filled with copies of “Possibilities with Parkinson’s: A Fresh Look” into the house. “This book is a labor of love for you two, written for PD folks, family members, and caretakers. But it also contains new scientific theory and useful clinical information for medical providers. How did you do this?”
Dr. C and Mrs. Dr. C look at each other, sharing that instantaneous communication that stems from a deep friendship. In an instant, they agree about which partner should answer first.
Mrs. Dr. C begins: “The easy answer is that it all began with the Parkinson’s diagnosis. But the story is more complex than that. Dr. C doesn’t display the typical tremor symptoms in more advanced PD. This has led to difficulties in getting both a PD diagnosis and the appropriate treatment.”
“We knew something was going on,” she continues. “But it took a very long time to understand what we were dealing with. There were so many false turns and medications that made symptoms worse or didn’t have any affect. We kept reading, exploring, and asking questions. It wasn’t until 2014 that a neurologist suggested a trial of levodopa.
“The results were incredible. Within hours, Dr. C could get in and out of the car again. He could walk without shuffling or dragging his foot. Such a simple course of action had profound effects. Now we could move toward treatment as a team to mitigate the worst, slow the progression, and improve the quality of life for both of us.
“As we learned more about Parkinson’s, we decided to write about our encounters with the limitations of PD diagnostic criteria. That op-ed was sent to Bionews, the parent company of Parkinson’s News Today. Staff there responded by asking if Dr. C would like to write a regular column.
“As the saying goes, ‘That wasn’t on the radar!’”
“Being a columnist was never on my radar,” Dr. C adds. “Come to find out, it’s something I enjoy. Being in research and then teaching at the college level, I had plenty of experience in scientific writing. What was new to me was personalizing my life and talking about the good, the bad, and the ugly.
“With each column, we expand our own knowledge. We try to find answers to questions that were asked during support group meetings. Our research takes us into scientific and medical publications that we try, in turn, to bring to readers in ways that resonate with them. So many people have responded positively, which kept us writing until we had 100 columns. It was this enthusiasm for the writing that encouraged us to pursue the book idea.”
Mrs. Dr. C jumps in: “You know that old saying, ‘Opportunity favors the well-prepared!’” Neo and Dr. C laugh. Mrs. Dr. C continues: “Dr. C is trained as a scientist, educator, clinician and an occasional mystic. He has been writing consistently every month for the past two decades. I don’t think his success could’ve happened without this preparation.”
Dr. C agrees, adding, “My success is also linked to our support partnership and all of the helping hands along the way.”
“That’s true,” Mrs. Dr. C says. “But you did the work. You showed up every day, battling chronic illness and pain and overcoming obstacles, on top of which you lost your vision. But you still showed up every day to lay down one brick at a time on the path of accomplishment. The goal was to remain a productive member of society.”
“It is hard work,” Dr. C says, “but it is good work. My approach to writing now is pretty much the same as it always has been. Every column has its own life, its own message. My job is to craft that message to fit within the life of the column. Often, that requires me to get out of the way of the process. Writing columns, then and now, continues to teach me about the crafting.
“While the columns are available online, we hope it will be helpful to have all of the material that was covered in our first 100 columns compiled into a book. The book also contains an essay not available online. Many people have asked where they can find it. Readers can look for it at Amazon, Barnes & Noble, Book Depository, and IndieBound.”
***
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
Comments
Christopher Keane
Dear Drs; C, Thank you. "Your Love of writing" line caught my attention. I've written 18 books myself, mainly fiction and biography, along with movies and television. Please let me know how I may obtain your book on Parknson's.
Sincerely,
Chris Keane
Warlita Sandoval
I was diagnosed with PD in April 2019. Prior to that date, in Nov 2018 my family doctór referred me to a neurologist to confirm the diseae. After a quick check up he said he did not see any PD. Boy, I was so relieved! My symptoms contnued though which were constipation, acting out in my ssleep, weaknes, dizzines, weakness in my left side of the body since 20017. My neurologist prescibed levodopa/carbidopa. I became worse but I continued taking the med as per advise of the neurologist. To wait a few months for the med to take effect. When he saw me 3 months later he agreed that I really looked worse. He said the levodopa/carbidopa is the gold standard med for PD. So he referred me to another neorulogist.
The new neurologist prescribed levodopa/benzoide and domperidone for the headaches.. it worked for about a year. Then the meds were wearing off and I was worse. The dosage was increased from 800 mg to 1000. It still did not help. My progression was getting fast. My neurologist then diagnosed me with MSA. It took almost 2 yrs to diagnose me with MSA.
Paulraj
I am a PD patient for the last four years. I have started reading the daily Parkinson’s news without fail and it is a wonderful journal. Understanding is the issues is simply and easy. Also my knowledge increases in medications, therapy and exercises . Also the experience sharing is amazing.
Thank for such journal.
Maria
I keep a newsletter of sorts going for my family doctor and she shares it with her patients. I get much of the useful info I share from My Parkinson's and the MJF websites. I find lack of knowledge or understanding often results in anxiety which is not good for anyone and is sure to increase tremors. I'm sad that my neurologist or his NP are not more knowledgeable about PD and I find many others have the same experience. That makes these sources so much more necessary and valuable.
Beverly Davis
I am greatful for the latest Parkinson’s updates from news today. I would like more info on. Hidrox, berberine . and TULCA. Which stops. Progression of. PDrrt
M