Parkinson's and the Police

Periodically, stories surface about Parkinson's symptoms arousing the suspicions of police, leading to harassment and humiliation for someone whose sole offense is being unable to be still or walk a straight line.

Such an incident occurred recently in Ashland, OH, where Bob Kendall went out for a late night walk. Officers stopped him, believing he was intoxicated, and then took issue with his constant moving. The episode ended with Mr. Kendall on the ground and handcuffed. He was released only when another officer recognized him and explained that he has Parkinson’s.

People with Parkinson’s (and everyone else) deserve to be treated with understanding and respect. Realistically, though, there will always be ignorant people and bullies in the world, and some of them will wear badges. So, what to do?

A Google search led me to Flex Your Rights, a not-for-profit whose mission is "teaching people to understand, appreciate, and assert their constitutional rights during police encounters." I asked Associate Director Scott Morgan if he had any advice for those of us whose movement disorders make us noticeable and vulnerable to police. He wrote:

There's nothing worse than being hassled due to a medical condition. I would hope that informing police of one's condition would usually diffuse most situations.

The gentleman was walking around late at night, which is fine, but may have contributed to the perception that he was intoxicated. Folks that are out and about after dark should be mindful of the potential for misunderstandings and be prepared to explain their situation if necessary in as calm a manner as possible.

It's easy to become frustrated with officers, but it doesn't help, even when it's totally justified. Police approach you with the assumption that you're a troublemaker and, unfortunately, it's up to the suspect to demonstrate otherwise.

If anyone is treated disrespectfully, I would recommend filing a complaint and publicizing any mistreatment that occurs. These types of incidents may help to educate police about dealing professionally with Parkinson's sufferers.

Given Scott's advice and Bob Kendall's experience, I plan to make up a Parkinson’s ID—a simple card that states my name, says I have Parkinson’s, and lists my contact person, physician, meds, and allergies. (I've found vistaprint.com to be a good source for cards.)

I'll keep a card or two in my wallet with my license and stash some by the driver's seat in my car. Then I can just hand an officer a card without speaking, a good thing because a) I might be too nervous to speak, and b) the less said the better, as you will see if you spend some time at Flex Your Rights. Check out their Street Stop Scenarios, as well as their video, which I found to be eye-opening. The examples in the video are mainly geared for young people, but the principles apply to all. Everyone should spend some time with these resources. Pass them on.

If I do have the misfortune to be mistreated by police, I'll turn to the internet to get the letters, calls, and e-mails flowing. Bob Kendall did, and police, city officials, and the local paper were flooded with letters and emails protesting his treatment. He performed a valuable public service and got a bit of his own back, too.

photo from dwightsghost on flickr.com

Balancing Acts

On August 7, 1974, Philippe Petit stepped onto a wire between the towers of the World Trade Center and enthralled New Yorkers with a breathtaking, impossibly daring performance—a singular mélange of focus, nonchalance, courage, beauty, and joy.

This week we mark the anniversary of the loss of the towers: seven years since that mild, clear morning gave way to ashes, flames, and dust. Up the Hudson River, where I live, you could smell the smoke for days.

As we all turned for comfort to family, friends, and neighbors, I felt fortunate to have recently found a virtual community on the Parkinson's Information Exchange Network Online (founded by Barb Patterson and John Cottingham, now going into its tenth year). On the email listserv of this site, PwPs of varying ages, stages, and nationalities exchanged information, stories, support, and humor. There were occasional scuffles and sulks, too, which only heightened feelings of being accepted, real, alive.

In the days following September 11th, many of us felt so alive it hurt. Like crabs who had shed their shells, we existed in a state of intense vulnerability and awareness that was almost too much to bear.

It is said that every loss stirs memories of other losses. For those who live with a degenerative illness, the consciousness of loss is never entirely absent, and each day is an emotional tightrope. We people with Parkinson's develop great skill on the wire. But when some extra, unexpected disaster comes at us, it's easy to fall off.

With normal reserve and defenses cast eroded, listserv discussions in the aftermath of 9/11 became increasingly vehement and political. The list began to fall into factions. One insisted that discussion be limited to topics directly related to PD, while the other declared that by excluding broader topics we artificially cordoned ourselves off and denied our role in the larger world. Remembering that discussion, I searched the list archives and found that around this time, well before Stephen Colbert and The Word, someone had posted the following:

Today's Word: Solidarity (Noun)
Pronunciation: [sah-lê-'dæ-rê-tee]
Definition 1: A unity of interests, objectives, standards and sympathy that results in community.

I can't think of a better word to honor this anniversary, as we struggle in arenas large and small to find unity and community.

Remembering Murray Charters and Camilla Flintermann, guiding lights of the list and extraordinary human beings. They are missed.

The exploits of Phillippe Petit and his band of co-conspirators are the subject of a remarkable documentary, Man on Wire.

photo by Tony Hoffman from flickr.com

Reason to Hope

A week ago I and millions of others watched Michelle Obama's speech at the Democratic convention. About three minutes into it, she spoke of her father, who was diagnosed with multiple sclerosis when he was in his early 30s. As she described how he got up early because he needed so much longer to get dressed, how he managed to laugh even as he struggled with his shirt buttons, I felt a rush of gratitude. It was me she was describing, and countless others with neuromuscular disorders. She really understood.

In 1998, my neurologist expressed the view, then widely held, that in ten years research would have yielded innovative new treatments and maybe even a cure.

Well, it's been ten years--years in which promising research was squashed by a misguided policy that limited access to stem cell lines, placed crushing burdens on scientists, and cast such a pall that an alarming number of researchers either switched fields or left the United States to work in countries supportive of their work.

So what? Research hasn't stopped altogether. If it's going on elsewhere, at least it's going on. Why should we care?

We should care because when a country as resource-rich and influential as the United States all but outlaws an area of research, it hurts that field. We should care because scientific breakthroughs arise from the collective energy of highly trained, knowledgeable, intelligent minds working on the same problem.

A New Yorker article (7/28/08) entitled "The Eureka Hunt," by Jonah Lehrer, sheds light on how we seek and generate insight. We focus on a problem for a while and then relax, allowing our brains to roam freely and seek associations that lead to insight. Achieving insight is described as "an act of cognitive deliberation transformed by accidental, serendipitous connections."

The limitations on stem cell research imposed by the current administration have created an environment that curtails serendipity and sabotages insight. The cramped condition of stem cell research in the USA mirrors the condition of Parkinson's patients: slow, stiff, wobbly. The 2008 Republican Party platform promises to be even more restrictive, calling for a ban on all embryonic stem cell research, public and private, including research using frozen cells stored in In-Vitro Fertilization facilities.

Is it too much to hope that one day, we people with Parkinson's will be able to button our shirts without getting up early to do it? I think it could happen, even in my lifetime. But not in the current stifling climate.

We need light and air. We need allies who understand our struggles and believe that our actual, realized lives have meaning and value. Embryonic stem cell research uses undifferentiated clusters of cells, never implanted in a uterus. These cells never had and never will have shirts to button, jobs to go to, kids to raise. We do.

The Disclosure Question

My doctor is great about putting patients in touch who she thinks may be helpful to each other. So the other day I got a call from a young, early stage woman named Lauren, and we ended up discussing whether, when, and how to tell people that you have Parkinson's.

It is not a comfortable or easy decision. Editor Michael Kinsley stayed in the closet for years, as did Michael J. Fox, and not without reason. Disability is viewed by many as deficiency, and a premium is placed upon presenting a can-do, up-and-at-‘em, high energy image. So what’s best? Try to squeak by on the right combination and timing of meds and fly under the radar? Or be out and proud?

Most HR people I have talked to will advise you that if you are interviewing for a job, it is best, if possible, to keep your condition to yourself. You are not required to disclose it and your prospective employer is expressly prohibited by the Americans with Disabilities Act (ADA) from asking about it. When there is a lot on the line—like health benefits—and you can “pass,” it is probably in your interest to save disclosure for after you’re hired. On the other hand, if your interviewer suspects that something is wrong but doesn’t know what it is, that could be the kiss of death.

If you're in a job when you are diagnosed, you have protections under the ADA. Yet many employees are reluctant to disclose, fearing that colleagues will doubt their abilities and lose sight of their individuality, seeing only the disease. And, legislation notwithstanding, bosses may exert pressure, subtle or overt, to quit.

Sooner or later, with this disease, we all reach the point where the question of passing is moot. Anyone who meets us will get that something is going on. We can no longer control that. We can, however, choose what information to share as well as how to share it. For everyone, those choices will be different.

Here is what I have chosen. I do consulting work, and I often find myself at a meeting or workshop with a group of people I’m meeting for the first time. What I don’t want is to feel self-conscious and scrutinized. Are people looking at me and thinking that something is wrong with me? Is my tremor kicking up? Do I look weird? All of these questions produce anxiety, which in turn guarantees a flare-up of the symptoms I am trying so hard to suppress. So I make a pre-emptive strike at the outset, along these lines:

Something I want you to know about me: I have Parkinson's. So if you notice my hand or my leg shaking, that’s what’s going on. It is not that I am overcaffeinated, though I always welcome a jolt of caffeine.

This little speech, even with the lame caffeine joke, makes people visibly relax. I get smiles coming back at me, and almost invariably someone tells me at break or at the end of the day about someone in their life with Parkinson's. Most important, I can relax and get on with the day.

So that’s what works for me. You?

Good Scents

Shared laundry facilities can be a wonderful thing. Without our laundry room, I wouldn't have met Michelle, with whom I began by commiserating about a malfunctioning dryer and ended up in an ongoing smellfest.

Let me explain. Michelle, it turns out, is a breezy but serious sensualist, deeply immersed in all things olfactory, who writes professionally for and about the fragrance industry. She also writes a delightful and wide-ranging blog called Glass Petal Smoke. I told her that I have Parkinson's and that people with Parkinson's sometimes lose their sense of smell. Knowing this, I had been thinking of how I might be able to exercise my smelling apparatus, just as I exercise my muscles, in the hope of keeping my scent-sense alive.

Instant karma. Fast forward a few days and there we are, Michelle and I, at my dining room table. Before us sits a plastic tray containing some 70-odd vials of essential oils. They are grouped and ordered according to a system designed by a French parfumier to train the "noses" of his industry to discern scents, much as vintners learn to savor and analyze wine.

Michelle lays out small strips of blotting paper around the tray, like a white picket fence. She labels two strips with the name of the oil in the upper left corner of the tray (it's lemon), and dips the tiny wands into the oil. We each sniff a blotter and describe what we smell, writing down the words that come to mind: lemony (duh), bright, sweet, citrus. We repeat the process for the first 8 oils or so, all in the citrus group, with names like mandarin, grapefruit, and bitter orange. Then we move to the next group, oils with a citrus foundation and grassy tones. These smells seem more complex. We find notes of licorice, hints of cucumber, whiffs of hay.

Somewhere in the vicinity of 18 scents, we reach smell saturation and call it a day. My head is full of fragrances. I can't wait to do more. There is something relaxing, almost meditative, about focusing on smells in this way. This kind of concentration has to be good for people with Parkinsons, I think—it's a great settler of anxious tension, which I sometimes experience in tandem with the disease's hallmark rigidity and slowness. (The combination is like wanting to jump out of your skin while you are up to your neck in river silt.) I imagine doing yoga breathing to the sounds of R. Carlos Nakai's flute in a room suffused with sachets of lavender, peppermint, or lemon verbena.

It seems unlikely that any of this will hurt, and who knows how it might help? Our smelling apparatus is concentrated in a postage-stamp sized area in our nasal passages where neurons with globular heads are densely clustered, eager to make direct contact with the molecules that comprise various smells. This is the one and only place where the brain is in contact with the atmosphere, which is why inhaling drugs is the fastest way to get them to the brain. (You do have to be discriminating about what you inhale!) The idea that there could be a therapeutic effect from certain fragrances doesn’t seem to me to be far-fetched.

So thanks to Michelle and a crummy dryer, I'm now a dedicated aromaphile. My message to anyone lucky enough to have a functional olfactory system: Wake up and smell the coffee, the lemons, and the lavender.