As I posted earlier, I’m now reviewing books and articles about PD, using a reader response format that I created for students at my school, the Bronx Charter School for Better Learning. At school we use it with staff, too, during some of our summer reading and writing workshops for faculty.
Here are the instructions that we ask teachers and students to follow when they’ve finished reading an article or a chapter in a book:
Reader Response Form
When you’ve finished reading, put the book or article away.
Keep the book / article out of your sight for Questions 1, 2 and 3.
Look at the book / article for Questions 4, 5 and 6.
- Describe in your own words what happened in the pages you just read. What are the main points? Do not look at the book or story as you do this.
- What’s your reaction to the story / article?
- What does the story / article make you think about from your own life?
- Copy a sentence from the story / article that you find especially interesting or unusual. Use quotation marks and write the page number:
- What makes this sentence interesting for you?
- What questions does the story / article raise in you? What questions are you left with?
Today I’ll review Shadow Over My Brain, by Cecil Todes. Here goes!
- Describe in your own words what happened in the pages you just read. What are the main points? Do not look at the book or story as you do this.
This book is probably the first ever written by a doctor who also had PD. Shadow Over My Brain: A Battle Against Parkinson’s Disease documents the author’s attempts to try one possible remedy after another during the 1970s and 1980s, all pretty much for naught. Here’s what I remember of the story:
Cecil Todes was born in South Africa in the 1930s to Russian Jewish immigrant parents. When he was seven years old, his mother died suddenly from an illness, an event that left a lasting depression on him. When he graduated from secondary school, he started studying for a career in medicine, soon moving away from South Africa to study in England and the United States. First he became a dentist; then he went back to school to become an oral surgeon. Then he developed an interest in psychiatry and psychotherapy, so he studied for that. He worked for a time in the clinic run by Anna Freud, then established himself as psychiatrist at a hospital in England.
He was 39 years old when he learned he had Parkinson’s. He discovered this when his self-winding watch stopped working. (Self-winding watches! Remember those?) Twice he sent the watch back to the manufacturer, who twice returned it to him saying nothing was wrong. A friend advised him to wear the watch on his other arm, and lo! No more problems!
Well, no more problems with the watch! It turned out that the problem was with his arm: His left arm no longer swung naturally when he walked, hence the watch never wound itself.
On the day of his son’s 4th birthday party, Todes realized that his left arm was also tremoring slightly. He snuck out of the house and visited a doctor friend, who diagnosed Todes’ Parkinson’s disease. Todes was 39 at the time; the year was 1970.
Most of the book recounts Todes gallivanting around Europe, seeking one experimental treatment after another. He also took L-dopa and later Sinemet, but he regulated the doses himself and often took huge amounts, way more than what Parkies take today.
For me, three main themes are woven throughout the book. First, there are the experimental drugs and procedures, including transplanting fetal brain cells directly into part of his own brain. None of them worked. Second, Todes strongly believed that many people get Parkinson’s because they experienced unresolved, psychologically traumatic events earlier in their lives. (In Todes’ case, it was his mother dying when he was a child.) Todes visits his own shrink through most of the book; he (Todes) hoped that by clearing up previous depressive damages to his psyche, he could cure himself of PD.
Third, although the book is clearly written and often upbeat, there are moments when, in the midst of describing with humorous clarity some situation he’s in, he mentions that in fact he was in great physical pain or psychological distress.
- What’s your reaction to the story / article?
I found it very strange to read this book. It was a kind of stereophonic experience for me, because as Todes discusses his life I kept seeing myself in the same or similar situations. So in my hand I was holding the book, in which all sorts of hopes, dreams, and frustrations play out in anecdote after anecdote, while at the same time in my mind I was recalling similar things happening to me. This was bizarre. In addition, the PD drugs L-dopa and Sinemet keep being the only things that help him. Isn’t that the case today?
- What does the story / article make you think about from your own life?
When I finished the book, I tried to read more about Todes online. Wikipedia has no entry for him, but I read a few articles from the British press. Most of them were obits (e.g., click!) which reviewed not only his book but what happened to him post-publication. The Guardian’s obit notes that at age 54, Todes rode a bicycle from London to Brighton – a remarkable feat and, the Guardian points out, probably the best PD therapy for Todes – way better than all the snake oil remedies he tried.
Where’s my bicycle again? What time does my gym close tonight?
- Copy a sentence from the story / article that you find especially interesting or unusual. Use quotation marks and write the page number:
I’m going to insert a few quotes here, not just one.
- “I was so relieved at not having a terminal brain tumour that anything less was welcome, especially as, in time and space, the end point seemed so far removed for the newly diagnosed sufferer. For me, Parkinson’s disease recalled the shuffling, drooling and speech-affected old men and women in the outpatients’ departments at hospitals where I had worked. I couldn’t imagine myself in this role. From the viewpoint of a healthy thirty-nine year-old there remained a vast distance to cover.” – page 3, when he is diagnosed with PD at age 39
- “My intention in writing this book is to record the first twenty years of a protracted course of Parkinson’s disease.” – page 7
- “We had agreed that as an outpatient, I would attend his clinic at ten o’clock each morning. On most mornings, the nurse was busily applying herself between three beds. She had great experience in intravenous work and went about it with effective gusto. I mounted the bed by means of a two-step cream painted wooden block. She then twisted a rubber tourniquet round my arm and inserted an inverted bottle, with its needle attached, into my vein over the elbow. She never had difficulty in finding a vein, and showed skill and speed that was masterly. The professor told us she was a former ice-skating champion; I should suspect that she would excel equally well at darts.” – page 96
- “I watched the development of the illness from a minor disability to one which now effectively prevents me from carrying on my profession and threatens me with increased immobility. Far from being a linear progression that one might suppose from reading about the illness, it is more of an emotional rollercoaster that one learns to negotiate or rather, one takes the ride knowing there is no alternative. The variation in behavior is more usefully compared with the development of a musical composition with its highs and lows, repetition and development of themes.” – page 153
- What makes this sentence interesting for you?
The first quote, from page 3, mirrors my own response to learning I had PD. The first neurologist whom I visited initially diagnosed me with either ALS or Multiple Sclerosis. Learning that I “only” had Parkinson’s was a joyous relief.
The quote from page 7 is awesome: someone documenting two decades of dealing with Parkinson’s and trying myriad potential cures, none of which really helped.
The third quote shows how Todes writes clearly and with humour. Yet a few paragraphs after this you learn the experimental treatment he received was a howling fiasco.
The final quote, to my mind, accurately describes what you go through as a person with PD. It’s an emotional as well as physical rollercoaster ride, with highs and lows, and not much you can do to stop it.
- What questions does the story / article raise in you? What questions are you left with?
What happened in Todes’ life after he published the book? Did he write anything else?
Why, when he was so keen on the idea that psychotherapy might help him get to the bottom of Parkinson’s, does he not describe what he talked about with his shrink during their sessions?
What’s up with the bicycle trip from London to Brighton? After he published the book, did he become keen on physical exercise? Are his notes on this published elsewhere?
