Clinical Test Reject

vitruvian_man-001Over the past year, I’ve offered myself up as guinea pig to a variety of clinical tests. I have a keen interest in neuroscience in general and Alzheimer’s disease in particular, so most of my inquiries have been brain-related. I have taken the online tests at mindcrowd.org, joined the Brain Health Registry, and evaluated my authentic happiness.   I spent two mornings at the Brandeis Memory and Cognition and Research Lab punching keys to record my facility at replicating lists of words and numbers with speed or accuracy – sometimes both. I scored as a satisfactory human being, except when it came to pattern manipulation. Then my spatial skills rocked me off the chart; a guy who’s been an architect for over thirty years is graphically dexterous. Each of these endeavors were considered baseline activities, helping research groups develop databases of normal functioning from which they can investigate the cool stuff: abnormalities.

images-6My primary source for finding clinical trials is Alzheimer’s Association Trialmatch. I get a list of potential trials every few months and am on a first name basis with Katie, who follows my process of query and rejection as study after study determines me an unfit candidate.

My first rejection was a VA study of physical fitness and cognitive brain function. Who better, I wondered, than an exercise maniac whose brain runs on overdrive? However, I was disqualified in the phone interview round for being color-blind. People say there are actual numbers in those damnable computer circles with red and green dots. I swear they are all the same color.

images-4Then I was rejected from Prospective Evaluation of the Sensitivity and Specificity of Cognitive Tasks for Diagnosis of the Cerebellar Cognitive and Affective Disorder at MGH for being left-handed. That felt like medieval prejudice.

Last month I got excited about Neuroimaging Study of Exercise and Memory Function because it included a regular exercise regimen. But they wanted couch potatoes, so my daily routine tossed me out of contention.

I chose not to pursue a study that required taking injections of an experimental drug. It seemed unwise for a person predisposed to avoiding drugs to start ingesting a substance burdened by a list of potential side effects that spilled onto a second page.

images-2But then I found the egg study: The Effect of Daily Consumption of Eggs on Cognitive Function in the Elderly. I could eat two eggs a day (or four ounces of egg substitute if I wound up in the control group) for six months in the name of science. I filled out the application, passed my phone interview, and headed off to the Jean Mayer USDA Human Nutrition Research Center on Aging at Tufts University for my intake interview.

I didn’t understand any of the science in the abstract, but the study logistics were plausible. There was an initial on-site interview and test, then a follow-up clinical exam to verify suitability. During the study I would visit the center every month to get eggs, and have a series of tests performed when the study commenced, and again after three and six months.

images-3The Tufts Nutrition Center is in a tower designed by my former firm, SBRA, during that period when we really didn’t like cities. The 1970’s concrete behemoth has an insignificant entrance and casts deep shadows over Washington and Stuart Streets near Chinatown. I remembered models and plans from the office, so anticipated the bright, airy three-story atrium that defines the upper floors. But anyone else would be confounded by the difference between the mean-spirited lobby and the sunny clinical areas.

I filled out paperwork, got shuttled from nurse to nurse, and eventually met Elizabeth Johnson, who took me into a small room off the atrium and administered a macular pigment density study. Turns out Elizabeth is the principal investigator, and took time to explain the study’s objectives to me.

Carotenoids are plant pigment found in yellow/orange fruits and vegetables. The more carotenoids we consume, the more we have in our bodies. But these plant pigments also contribute to other aspects of our health, and may contribute to increased cognition. Lutein, a carotenoid common to green leafy vegetables as well as egg yolk, is of particular interest. According to Dr. Johnson, it’s difficult to design a study that can directly measure neural lutein levels and the relationship with cognition.

images-5Fortunately, brain lutein levels are positively correlated to lutein levels in our retina, and we can do simple, quick, non-invasive tests to determine our lutein levels in the retina.

In broad terms, the study plans to measure baseline lutein status and cognition for two subject groups. One group will eat more eggs, whose yolks are high in lutein, while the control group will eat similar amounts of egg whites only. After six months, if the hypothesis proves true, cognition will improve among egg eaters relative to egg white eaters. Improved cognition implies decreased propensity for Alzheimer’s. The scientific path is not always a straight line between two points. In this case measuring lutein levels is a round about way of exploring whether there is a neurological benefit of eating eggs. Never mind that cholesterol business.

imgres-1Dr. Johnson adjusts instrument controls while I stare through a lens in a small box at a fuzzy, blue dot that comes into ever-sharper focus. It’s much like any ophthalmologist’s exam. She tells me the good news – my macular pigment (lutein in the macular area of the retina) is 0.7 on a scale from 0 to 1.0, very high for a person my age. (I have reached that stage in life where every commentary on my physical being is qualified by an age reference.) Unfortunately, Dr. Johnson explains, the bad news is that my eyes are too good to be part of the study. They are looking for people over age 50 in the 0.3 range. “We simply can’t expect to find any measureable change in your lutein levels when starting from such a high baseline.”

My guinea pig cravings have been thwarted once again; first, too much exercise, then color-blindness, left-handedness, and now high lutein levels. I’ll keep looking for a study that wants me. After all, I’m only getting older and eventually my body will deteriorate to a level suitable for research.

_________

Special thanks to Dr. Elizabeth Johnson, who reviewed and edited my science or this article.

 

 

 

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Boston Globe Magazine – Raising Roofs to Sweeping Dirt

haiti-001Architecture by Moonlight has officially launched! Many thanks to Susanne Althoff, Francis Storrs, Hans Schulz, and the Boston Globe Magazine for publishing an excerpt; New England Mobile Book Fair, Book Ends, Harvard Bookstore, and Calamus for hosting readings, Joe McDonough at MIT Alumni Association and BJ Krintzmen at NewTV for their interviews, Felicia Gordon for publishing essays on Medium, and my wonderful friend Globiana for hosting my launch party. There is more to come – find it at www.paulefallon.com.

MAG1116_Haiti95798782The Globe Magazine excerpt features my first trip to Haiti after the earthquake, when my son Andy and I build temporary shelters. I end my readings with a passage from my last trip about the women who sweep dirt. They help me understand that although we embark on foreign travel in search of the exotic, what ultimately imprints is our commonality.

This morning I realized my bond to those who sweep dirt is even closer than I thought. I received this email from my daughter, a Peace Corps volunteer in Cambodia.

imagesKeep spreading knowledge about how most people in the world live. Maybe your book will help open up some eyes. I sweep my yard every morning, and every morning I think about you and the Haitian women sweeping their yards. Small world, lots of dirt.

 

 

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The Virtues of Being Colorblind

vitruvian_man-001Long before the word ‘colorblind’ became a saccharine euphemism for ‘not racist’, it described a person’s inability to see certain colors because the cones in their retinas do not register the complete spectrum of wavelengths entering the eye. It’s a genetic condition that affects up to 5% of all men, but few women. There are several varieties of colorblindness with technical names like protanamoly and deuteranamoly, but most people refer to the three most prevalent types as red/green, green/brown, and blue/purple: the predominant color confusion inferior cones induce.

imgresColorblindness is determined by a simple visual test. A single digit, composed of multiple dots of the same color, floats in a field of differently colored dots. Or so I’m told. I’ve never seen a red ‘3’ or green ‘6” or blue ‘7’ pop out when I study that dizzy array. I think the test folks are pulling my leg; they just chuckle and tell me I’m colorblind, and I’ve got it bad.

“What color is this?” “What color is that?” As soon as people learn I’m colorblind they point to their blouse or a painted wall. If I misname the color, they laugh. If I guess correctly, they doubt my veracity. Colorblindness does not turn the world black and white; it simply renders it in a more limited palette. It cowers in the murky blends of the color spectrum; it thrives in texture and shadow. I can match eight shiny crayons in a Crayola pack with their conventional names, but I cannot articulate the yarns of an autumn sweater.

imagesThere is a semantic element to colorblindness – if I see green and call it green, then its green, at least to me. But when so many other people call the same object red, I must shrug and yield to the majority. Science reveals that colorblind people see a less vibrant world. Anecdotal evidence supports that finding. Often, when I point out a color I like, my companion will recoil, “Its so garish.”

imgres-1My favorite painter is Mark Rothko, whose saturated colors soothe me while Seurat’s pointillism leaves me cold. I love artificial brilliance: carpets in Chinese restaurants, maraschino cherries, The Lego Movie. All those bright yellow heads! No one is colorblind to yellow. We all see the sun with equal radiance.

As a fledging architect, colorblindness was my burden. I passed color theory by actually reading the theory, since I could not trust my eye to discern desired relationships. When a senior partner at my first job demonstrated how he wanted me to render a drawing, I was too insecure to admit that, to my eyes, his subtle earth tones looked like mud. Instead of paying attention to his line weight and hand technique, I resorted to color-by-number. I scribbled down the Prismacolor designation of each pencil he used. No way could I differentiate Burnt Umber from Terra Cotta by looking at the lead.

Over time, as my confidence grew, I developed a distinctive rendering style: all grey tones. I divulged my condition to clients, and got exempted from those pesky discussions of interior finish selection. I could focus on form.

I got used to the inevitable questions when someone discovered my so-called disability. Colorblindness is a conversation starter; people find satisfaction in being more color literate than me. As disabilities go, colorblindness is minor, yet it’s important for each of us to embrace our shortcomings; so integral to our humanity.

FULL_AppleBowlJust last week, when the grocery checkout mentioned the colors of the apples I bought, I told her that, being colorblind, they all looked the same to me. This triggered the usual exchange. Until she said, “Maybe the world is brighter for you in other ways, just not through color.” As transactional conversations go, it was stellar.

I used to consider colorblindness a deficiency. Then I realized it was just a different way of being. Now I see its advantages. It’s a unique perspective I can share with others, one that can lead to a deeper connection. Maybe the politically correct use of the term ‘colorblind’ is not so remote from its genetic origin after all.

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Medium is the New Message – Culture Club is the New Party

usa-001If 140 characters stymie your expression, time to move past Twitter and explore Medium. Medium.com is a longer form collection of essays, rants, humor, and quality writing, started by Twitter co-founders Evan Williams and Biz Stone in 2012 with an eye toward sharing more substantive ideas.

 

Medium is comprised of hundreds of collection’s, each curated by an editor. Some collections have only a few dozen readers and explore specific topics, like Urban Planning, Yoga, or Detroit. Others have hundreds of readers and focus on general interest topics such as travel or politics. The largest collections, with thousands of readers, include essays that span genres and explore the essence of contemporary life. Over the past year I’ve posted over fifty essays to Medium, in a variety of collections. But when I have something really worthwhile, I always start with my preferred curator, Felicia M. Gordon.

02-elle-01-feb-fashion-worbook-parallel-thinking-stripes-0113-xln-mdnHarlem’s 21st century renaissance is encapsulated in this singular talented woman. Felicia is trained in drawing, painting, and photography, and I can attest to her exquisite editing skills. She formed the Sugar Hill Culture Club in 2006 to develop collaborative art projects that reflect a refined, urban ethos. She has been profiled in Elle and New York Times Style Magazine. Felicia’s recent book, Where’s Wendell? is a hand bound photographic journey with avant-garde fashion designer Wendell Headley. I am looking forward to the copy I ordered as a Christmas present to myself.

 

Felicia’s Culture Club collection on Medium proclaims to “get in the cracks and crevices of race, class, culture, and identity. It’s a party. Come as you are.” That slightly irreverent description is spot on. Culture Club is ripe with provocative ideas and excellent writing that is both fresh and relevant.

 finalbook2Over the next few months, Culture Club will feature excerpts from Architecture by Moonlight. True to her discerning taste, Felicia selected only half of what I offered – the best stories and observations of my time in Haiti will be published on Culture Club. Enjoy The Same Moon and Adopted by an Orphan now, and look for others in the weeks ahead.

But don’t log on to Culture Club just to read me. Read the dozens of other thoughtful writers Felicia supports. You will always find something to nourish your mind and your soul.

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Ocean View Restaurant

vitruvian_man-001ocean view signSometimes it’s important to take the long view on the good things in life.

 

 

romanceMy wife and I went to the Ocean View Restaurant on our honeymoon because it was so romantic.

 

 

dancingMy wife and I went to the Ocean View Restaurant on our tenth wedding anniversary because we liked to dance.

 

 

 

 

 

 

imgresMy wife and I went to the Ocean View Restaurant on our twenty-fifth wedding anniversary because it had a heart healthy menu.

 

 

 

early bird specialMy wife and I went to the Ocean View Restaurant on our fortieth anniversary because it offered an early bird special.

 

wheelchair

 

 

My wife and I went to the Ocean View Restaurant on our fiftieth anniversary because it was wheelchair accessible.

 

 

romance

 

My wife and I went to the Ocean View Restaurant on our sixtieth wedding anniversary because we’d never been there before.

 

 

Thanks to Garrison Keillor who featured this story on A Prairie Home Companion.

 

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Brooklyn Street Struts into Wayland

vitruvian_man-001The Boston area has an eclectic collection of small theaters where energetic troupes produce shows on vintage stages. Jamaica Plain’s Footlight Club, Riverside Theater Works in Hyde Park, and Arlington Friends of the Drama are but a few of the venues where emerging talent and seasoned hoofers offer engaging theater at a fraction of the price downtown shows command. On Halloween night I ventured beyond Route 128 to see the Vokes Players Production of Avenue Q. The few extra miles along Route 20 were worth the effort.

imgresBeatrice Herford was an Anglican minister’s daughter turned vaudeville comedic monologist and dowager wife of the well-to-do Wayland gentleman, Sidney Hayward. In 1904 she built a theater to entertain her friends, complete with balcony, side boxes, and a carved proscenium. By the 1930’s the 90 seat Vokes Theater, named after an English comedienne Mrs. Hayward admired, was wilting. Beatrice ceded it to a local group who, with occasional interruptions, has performed there ever since. They’ve made improvements, like adding heat and restrooms and a back stage, but the place retains the Depression era gumption of Judy Garland and Mickey Rooney ‘putting on a show’.

imagesThe lobby of the Vokes Theater’s wood frame Victorian structure has that distinct scent I associate with Cape Cod spring – a bit musty yet ripe with promise. Our third row center seats were perfect – in the double height space with the graceful balcony arcing behind, the whimsical boxes on the sides, and the fanciful proscenium filling our full width of vision.

images-1I never saw Avenue Q on Broadway (Tony Award for Best Musical, 2003) where it played in the 800-seat John Golden Theater. Boston Lyric Stage’s excellent 2012 production adapted the show’s scale to its smaller space, but turns out that, just like toddlers like to watch their Sesame Street up close to the tube, Avenue Q improves with proximity. What the Vokes production lacks in the Lyric’s polish, it makes up for in intimacy. From twenty feet away, the actors and puppets portrayed the alternating humor and pathos that is the core of Avenue Q with both levity and conviction.

The cast is uniformly good; three are worth special mention. Nick LaPete as Nicky and Trekkie Monster is outstanding; his facial expressions and vocal tricks match his puppets with uncanny precision. If Gary Coleman could sing half as well as Lovely Hoffman, who cross-dresses to plaimgres-1y the former child star, he might not have been so broke when he died. Christine Verzosa, as the Japanese social worker Christmas Eve, has impeccable timing. Her lisping, ‘evelyone a little bit lascist’ brought down the house.

 

When Beatrice Herford died in 1952, the Vokes Players hung an oil portrait of a stately dame with a giant boa at the end of the theater’s main corridor. She looks like Ethel Barrymore channeling Brenda Braxton in Smokey Joe’s Cafe. Which pretty much sums up my initial impression of the Vokes Players. Avenue Q seems an appropriately quirky play for this delightful little theater, and it’s easy to see how this winter’s Harvey could be a great fit as well. Harder to imagine how they will tackle their spring production, the Palm Springs faimgres-2mily squabbles of Other Desert Cities, beneath the putty garlands above the proscenium that Beatrice reportedly gilded herself. I may just have to motor out west again to find out if the Vokes Players can bring the desert to Wayland as effectively as they bring Brooklyn.

Avenue Q plays at the Vokes Theater through November 15, 2014.

 

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Yoga for Parkinson’s Disease

awkward_pose_3-001“Inhale. Raise your arms out wide and overhead.” Charles’ right arm lifted 45 degrees off his hips. His left arm lagged, though it pivoted a few inches higher. His left hand bent at an odd angle. “Can you straighten your wrist to create a continuous line from shoulder to fingers?” He flashed a smile that indicated he knew what I requested, but his hand didn’t budge. Charles was oblivious to it being skew.

This large man in gym shorts and a scrub tee sitting on the edge of a straight chair with his arms cocked like a broken-winged bird was striking Tadasana. Mountain Pose, the tallest of yoga poses. For most Tadasana is an arrow of energy reaching proud to the sky. But for an 82-year-old with Parkinson’s Disease, it looks very different. I noticed that Charles’ arms rose higher than the previous day, if only by half an inch. His effort was genuine. It was a good Tadasana.

I focus on teaching yoga to middle-aged and elderly men with compromised mobility. Some suffer from too many sedentary years and too much food; others have tender backs or nagging sciatica. The most severe, like Charles, suffer debilitating conditions that make everyday movements difficult. Regardless how old and infirm a person is, I develop a sequence of breath and asana he can execute with satisfaction, and then we work to extend mobility beyond that benchmark.

My work with Charles, a native of India visiting Boston for an extended period of medical treatment, highlighted the benefits yoga can bring to people with complex medical conditions. It also illustrated how yoga could be integrated into a comprehensive treatment plan. I incorporated Charles’ physical therapy exercises into our sessions, yet remained focused on the specific benefits of asanas: breath; control; and alignment.

Parkinson’s disease is a progressive movement disorder that occurs when our brain doesn’t make adequate amounts of the neurotransmitter dopamine. Dopamine disseminates messages from our brain to our muscles. Without enough dopamine we have uncontrolled movement. Parkinson’s most familiar manifestation is tremors, particularly in the arms and legs, but the disease can also produce stiffness, slowing movement, changes in speech, and erratic gait. There is no cure. Medications help people control Parkinson’s and exercise is effective in alleviating symptoms and extending mobility.

Any type of movement can benefit Parkinson’s patients. However, activities that incorporate pattern and sequence, like Tai Chi, zumba, and dance, are most effective. Yoga, which integrates pattern and sequence along with breath control, is particularly effective.

Parkinson’s Disease has five discrete stages. Tremors are common during Stages One and Two. Charles was in Stage Three, when shaking often gives over to an eerie calm. Charles stood still for moments before he moved, concentrating on his first step. Then he made quick, tentative wobbles. Once underway, he stepped forward at a steady pace and often accelerated until he encountered some obstacle or needed to change direction. Then he stopped, recalibrated, and began the hesitating sequence again. If I set my foot directly in front of his, Charles immediately stepped over me and continued walking, as if the obstacle added urgency to the message from his brain to his leg.

images-1I had outlined a Parkinson’s-based posture sequence derived from Iyengar, Renee Le Verrier, and literature about yoga for Parkinson’s, but anticipated adjusting it according to Charles’ capabilities.

His son Frank shared Charles’ physical therapy exercise diagrams and expressed concern about his father’s lost leg strength. Although I wanted our sessions to complement Charles’ medical treatment, my emphasis was yoga, so I began with breath.

Charles sat on a straight chair with his knees out straight. We inhaled and exhaled to a regular rhythm. I hovered my palm two inches above his thigh and. “Inhale, raise your right thigh to touch my hand. Exhale, release your foot back to the floor.” Charles maintained his breath, but couldn’t correlate movement. His thigh lifted, slowly, then abruptly fell. It rose again and again with increasing speed until I lowered my hand to his knee and steadied his leg to the floor.

UntitledWe spent fifteen minutes doing toe raises; heel raises; hip flexes. He lifted one leg and crossed it over the other. I focused on consistent breath even when his movements were erratic. We stood. He held the back of his chair. More toe and heel raises, full leg flexes, and knee bends. We ended our half hour by marching in place, one of his PT exercises. After four or five steps, either Charles’ knees trembled or his legs rooted in stillness. It was remarkable how the same sequence would dissemble in such contradictory ways.

During our first week we established a warm-up routine, incorporated his PT exercises, and added new poses. Charles couldn’t get up and down from the floor, so we concluded sessions with supine twists and savasana on his bed. I massaged his legs and feet. His muscles were taut despite not being able to move them as he desired.

The second week, we extended our sessions to 45 minutes. Charles’ movements became more controlled; sometimes they even corresponded with his breath. One day, after Savasana, I eased him into a sitting position. “Can we do yoga breathing?” he asked. Before I could answer, he brought two fingers to his nose and initiated Nadi Shodhin, alternate nostril breathing. Then he stiffened his belly and began percussive Uddiyana breath. After twenty or thirty quick exhales he brought his hands over his eyes and let out a trio of Om’s. Charles never explained where he learned these breathing techniques, but we established a new way to end each session.

At the beginning of our third week Charles wanted to move his reclined poses from bed to floor. I was concerned about getting this 190-pound man onto the carpet, and even more concerned about getting him back up. But his initiative was strong, so I tailored our standing series to prep for lying down. I discovered that Charles could raise his hands full overhead if he moved his arms forward rather than laterally. We practiced squats, albeit shallow ones. We moved into Halfway Lift, first with hands on thighs, then hands on shins. Using his chair as an aid, Charles descended to his knees and got into Table Top. He struck Cow/Cat and maintained his balance through gentle forward shifts. Finally, Charles lowered all the way to the floor, rolled on his back and grinned at his success. The firm surface improved his floor exercises. Getting back up took more than a minute as he shifted to a seat, knelt to Table Top, and pressed against his chair to stand.

Every day Charles greeted me with a smile, proclaimed he was stronger, and demonstrated that conviction. I came to expect continuous improvement. Then, in the middle of our fourth week, his smile faltered and his movements were slow. He stumbled moving into Table Top. I broke his fall. He rolled onto his back. Then he laughed.

Untitled“Why do you always laugh?” I asked about his odd reaction to anything that proved difficult.

“What else can I do?” He shrugged his large, awkward body, raised his eyebrows, and chortled some more. After his floor postures Charles took a long savasana and I gave him a gentle massage. I supported his sitting position for our final breathing with my legs. The vibration of his Om’s resonated through my shinbones.

I discussed the change with Frank, who explained the doctor’s had taken Charles off his Parkinson’s medications to test his functioning without them. I was glad to understand the reason for Charles’ sudden dip, and marveled at how close our body chemistry is linked to our abilities.

For the next week, every day was different. One day Charles was strong, executing all his poses and working from the floor. The next day he was so fatigued he remained in his chair. Frank reported improvements in other aspects of Charles’ health attributed to reduced drugs, so we continued to explore how to regain balance and strength with his new regimen. Eventually Charles spent more time standing and, on good days, executed his entire sequence.

Rotational movements were very difficult, which made sense since moving in multiple planes is complex. I introduced seated and standing twists, lateral movement synchronized with breath, and angled steps with a torso shift to open the centerline of his body. Charles turned in a circle by shuffling through dozens of tiny weight shifts rather than taking discrete steps. I slowed his movement down, encouraged him to place one foot with one breath, and he learned how to turn a full circle in only six steps. The number six became our threshold limit. Whether straight or in a circle, Charles could not maintain a steady gait beyond six steps.

We practiced yoga five times a week for six weeks until Charles returned to India. Six weeks is insufficient time to make definitive claims for yoga’s influence on a Parkinson’s patient’s health, movement, or disease progression. Due to Charles’ age and advanced disease stage, much of what we did was a hybrid of yoga, elder fitness, and physical therapy. It is difficult to separate the benefits of our yoga from Charles’ drug regimen and physical therapy. However, Charles, Frank and I can each attest to improved balance and strength. Hopefully, more controlled scientific studies will be done to reinforce and refine the link between yoga and Parkinson’s. In the meantime, the anecdotal evidence is strong that regular yoga can be a powerful adjunct to medical treatment.

 

 

 

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