Sheryl Jedlinski, one of the 2016 World Parkinson Congress‘s official bloggers, just published the humorous book, Parkinson’s? You’re Kidding Me, Right? You can get it on Amazon or wherever finer goods are sold.
I’ll review it à la my Reader Response Form, which we’ve used with students and teachers at my charter school in the Bronx.
Reader Response Form
1. Describe in your own words what happened in the pages you just read. What are the main points?
Sheryl has had PD for over 20 years – and, as a double whammy, she also had cancer. This book covers a lot of difficulties that people with PD face, but in every chapter Sheryl finds funny things to say. She deals with an awful lot: accepting that she has to use walking sticks to help her get around; accepting that she has to give up driving (although before this happens, she does have a few run-ins with the police); accepting that she falls out of the chair at her desk a lot and ends up under the table, which makes it difficult to answer the phone.
Each chapter focuses on a crucial issue that all of us Parkies need to work on: finding the right doctor to diagnose your PD and manage your care going forward; fighting the disease with exercise; dealing with falls; getting involved with local Parkinson’s support groups; dealing with sleep issues (both insomnia and daytime drowsiness); dealing with all the non-motor symptoms (including accepting the fact that you may need adult diapers); dealing with eating out in restaurants.
Dealing. The book deals with dealing. But Sheryl finds joy and/or humor in almost everything, and she leads an active life with friends, family, doctors, and police officers. Perhaps the greatest joy for her is the birth of her grandchild, and the opportunity to babysit her (with the help of Sheryl’s husband, Tony).
The book also delves into the background of the two websites Sheryl started:
- www.pdplan4life.com, which she co-ran with fellow WPC blogger Jean Burns
- www.livingwellwithparkinsonsdisease.com, which she manages on her own
The first website, the one she co-ran with Jean Burns, attracted more than 100,000 visitors from around the globe during the seven years they worked on it. It’s still up on the Interwebs for anyone who wants to read it.
2. What’s your reaction to the story / article?
I like the way Sheryl dives deeply into key, exasperating details of her life, even when they’re highly personal. For example, she goes on for page after page about getting fitted for compression stockings, and later getting fitted for a girdle with a special fly in the crotch so she doesn’t have to remove the girdle to use the toilet. You’re right there in the dressing room with her and the store’s assistant who is helping her squeeze into her girdle. That’s so up-close-and-personal.
I felt the same way when she describes her experience buying adult diapers for the first time.
And then there are lots of funny lines. For example, here are some section headings:
- A walker doesn’t project my desired image.
- I swim minus the drowning part. Film at 11.
- Mall walking may be my Olympic sport.
- We don’t do trays anymore.
3. What does the story make you think about from your own life?
Why do so many Parkies have to deal with doctors who misdiagnose them when the Parkie first starts to show symptoms? Here are the opening paragraphs of Sheryl’s book, in italics:
The first indication I had that something was wrong was when I noticed my left pinky tap dancing on the kitchen table without my permission. That finger had not even taken lessons.
My internist, at the time, wasn’t the least bit concerned when I reported that my pinky was moving around like a Radio City Music Hall Rockette on steroids. He attributed this to my being a middle-aged woman anxious about becoming an empty nester, as my sons were of college age.
“Why then,” I asked, in the immortal words of rocker Jerry Lee Lewis, “don’t I see ‘a whole lot more shakin’ goin’ on’ among my friends?”
Insulted by my commentary, the doctor turned and left the room without so much as a wave. I made a mental note to find a new internist, less sensitive to his own feelings, and more sensitive to mine – someone able to distinguish between a dancing pinky and a possible neurological disorder.
Months later, with my tremor more pronounced, a general neurologist told me I had a condition called essential tremor – based not on my symptoms, but on his belief that I was “too young” to have Parkinson’s disease. Obviously, he hadn’t read the issue of People magazine in his waiting room – the one featuring Michael J. Fox’s ‘coming out’ story on the cover.
I had a similar disastrous experience when I was diagnosed with PD. It started when I told my regular doctor, during my annual physical examination, that my right arm shook at the gym when I was lying on my back doing bench presses. My left arm could shoot straight up with the barbell, but my right arm lagged and trembled.
My doctor referred me to a neurologist, which I thought was strange because I believed I had a muscle problem, not a nerve problem. The neurologist observed me for about a year, watching me walk in his hallway, sending me out for some MRIs, doing a spinal tap. At the end of the year, he told me he had narrowed down the diagnosis to two possible diseases: ALS (Lou Gehrig’s disease) and multiple sclerosis. He said he’d tell me his final decision at my next appointment with him, a month later. He said this objectively, not softening the blow in any way.
Living with a potential ALS diagnosis for a month was a nightmare, which I later wrote about in a piece that starts out purely factual and then veers into fiction (How to Die – Oh Really?). At the month’s end, the doctor said I had multiple sclerosis. This was a relief – a cause to celebrate. However, when I returned to my primary care physician and gave him the news, he said to visit some other doctors and get a second opinion. So I visited three doctors who specialized in MS – and they all said I didn’t have MS. The third doctor, in fact, suggested I had Parkinson’s, so I visited three more specialists who worked with PD, and they said, yes, I had PD.
Needless to say, I stopped seeing the original neurologist who misdiagnosed me, and have been very happy with the upbeat, supportive, professional movement disorder specialist I now see, who makes me feel I’m one of her star patients. (“Amazing,” she often says as she examines me. “There’s been no progression.”)
4. Copy a sentence from the story / article that you find especially interesting or unusual. Use quotation marks and write the page number:
I’d like to copy Sheryl’s guidelines for living with Parkinson’s (pages 16-18). This is a rather long list, and you may have heard parts of it elsewhere before, but it bears reading again.
- Do not allow Parkinson’s, nor other people, to define you. You are the same person you have always been. You are not a victim. You are not powerless. You are a seasoned fighter for whom giving up is not an option.
- Keep looking ahead and making plans for living, remaining flexible and open to new opportunities, directions, and purposes for your life.
- Connect with your local Parkinson’s community through advocacy and support groups, exercise classes, and awareness and fundraising activities, etc.
- Grow your own support network of family and friends.
- Concentrate your energies on relationships and goings-on that make you happy.
- Keep up with your normal daily activities for as long as you can. Focus on what you can do, not on what you can’t do.
- Make physical and mental exercises (e.g., crossword puzzles, Sudoku) part of your daily routine.
- Maintain a positive attitude.
- Reduce stress and anxiety through complementary and alternative medical therapies, including acupuncture, massage, yoga and Tai Chi.
- Keep laughing.
- Gain strength and courage with every obstacle you overcome.
- Live in the moment. The fear that comes from projecting worse case scenarios is paralyzing, zapping us of the energy we need to do what we must to live well today.
- Ask for and accept help when needed.
- Be open to participating in clinical trials. Your chances of being accepted into trials testing potentially neuroprotective treatments are best prior to starting on Parkinson’s medications.
5. What makes this sentence interesting for you?
I think this is a good “to do” list to print out and hang with colorful magnets on your refrigerator. Refer to it often.
6. What questions does the story / article raise in you? What questions are you left with?
I would have liked to read more about how Sheryl coped with cancer at the same time she was dealing with PD. How did she manage physically? How did she manage psychologically? How did it alter her life? (Note: according to her website, she is now cancer free. Hooray!)
I really like your blog. Thx for doing it.