An Alert, Well-Hydrated Artist in No Acute Distress
Episode Thirty: On and Off, Up and Down
The story of two artists with incurable neurological disease sharing fear, frustration and friendship as they push to complete the most rewarding work of their careers.
People in the Parkinson’s community often talk about the “honeymoon period” of the disease. It’s generally agreed that this phase is the first few years following diagnosis, when symptoms are still mild and medications are working well. It’s hard to fathom why anyone would come up with such an expression. For one thing, drawing a parallel between the course of a disease and a marriage proposes a cynical view of married life — as if it’s all downhill after the honeymoon. I can only imagine that the person who came up with it either didn’t have Parkinson’s or had had it for decades and was looking back nostalgically on how relatively vigorous he’d been at the beginning of his illness. Gosh—what a shame that so many newly diagnosed people don’t realize they’re on a honeymoon!
Running with the idea of a honeymoon phase, though, I will say that when I was finally diagnosed with PD, the cheer I felt knowing that I wouldn’t be subjected to more dismissive doctors was not unlike the relief I experienced when I married and could finally stop dating. Even more exciting was to discover I wasn’t dying of a neurological disease worse than PD. I thought, “OK, everyone has their thing to deal with; this is mine.”(Sparing you the marriage metaphor here.) And I felt good, not sick; so what if I walked a little like Frankenstein? Just as the early years of blissful wedlock can create the illusion of a protective bubble, getting a big diagnosis made me feel exempt from all the other diseases that affect people my age. This, of course, was ridiculous. Seven years and a few funerals later, I’ve lurched out of my honeymoon denial and realized that one bad marriage to an illness won’t protect me from another. Diseases are often (sorry) polygamous.
If by now I haven’t totally depressed you, I hope you will stick with me. This being Episode Thirty, it seems high time to describe the day-to-day reality of living with Parkinson’s. In the previous episode I discussed how people with PD think about our disease in the big picture, how we strive to be positive and pro-active. But there are many days when we aren’t striving for anything more than getting through the day, picking off challenges hour-by-hour and sometimes, minute-by-minute.
Everyone’s Parkinson’s is different and our subjective experiences of it are just as varied. For me, days are often like a piano piece in which the right hand is playing a rich and lively melody while the left is playing the insistent chords of a dirge. Tuning out my left hand is easier on some days and during some hours than others. The low dose of antidepressant I’ve been taking for many years predating my diagnosis has helped enormously with insomnia, usually keeping me asleep through those particularly haunted hours between two and five a.m. Getting enough sleep is essential for anyone’s emotional well-being, and with PD it’s hard to achieve. I wake up every time I have to shake out an excruciating leg or foot cramp or roll over, which is difficult for Parkies to do. Since I’m frequently visited by nightmares, in the morning I wake up thinking, “Thank goodness that was only a dream.” My second thought is, “Oh yeah — I have Parkinson’s.” I’m groggy, thickheaded; it’s been too many years to count since I last woke up feeling refreshed.
This is where I start my day: in a hollow that I must find a way to climb out of. Feeling low is one of the major non-motor symptoms of Parkinson’s; about 50% of people with the disease experience depression, and 40% have anxiety at some time. The percentage is higher among those with a family history of these disorders. Depression and anxiety are attributable to neurochemical changes that occur as part of the disease process: Neural pathways in the brain that transmit dopamine and are affected by PD also transmit the neurotransmitter serotonin, which is known to regulate mood. In PET scans, changes show up in the same areas of the brain in people with PD and those with depression and anxiety.
Antidepressants have been found to be very helpful for people with PD, but about two thirds of those suffering from depression aren’t being treated for it. In part, this might be because it can be difficult with a degenerative disease to get to the root causes of depression, which lie in not only neurochemical changes and our daily struggles, but also living with the grim prospect of an ever-roughening road ahead. With other chronic illnesses that aren’t always progressive, hope can be generated by unpredictability and variability — one could go into remission or even fully recover. Until there’s a medical breakthrough, there will be no remission or recovery from PD; those with younger onset Parkinson’s are guaranteed to have the life of an old person before we’re old in years. The medications I take to sleep, my low-dopamine state and restless night are all in play on my melancholy mornings, but I will venture that the biggest killjoy is the simple knowledge that despite how well I take care of myself, I will be measurably more disabled with every passing year.
It’s slow work to get my body out of bed and make the stiff trip to the bathroom, toes on both feet painfully curled from the dystonia of PD. Then, I return to bed with my laptop and reading materials. As much as I can, I structure my day so that I don’t have to leave the house or be physically active first thing in the morning. This way, I can delay taking my first dose of levodopa and the later I start medicating, the fewer doses I’ll need to get through the day. I spend the first couple of hours I’m awake perusing the New York Times, reading some of a novel, or working on my laptop connecting with the people in my life and the world of information and ideas. I check in with Facebook to see what provocations, hilarity and activism my friends have cooked up during the night. A little after eight o’clock, I take my levodopa, which will kick in 45 minutes later. I sign a couple of petitions and post an opinion or two. I allow the planet’s woes to trouble me enough to diminish my personal plight, but not so much that they sink me. Gradually, the isolation I felt upon waking recedes and I feel I belong to the world. I have not yet left my bed, but I am participating, therefore I am.
And, now, flush with dopamine, I can move comfortably, so I can also do. By nine-thirty I am further rejuvenated by my delicious breakfast — yogurt and berries mounded on top of my homemade granola, and coffee. Then it’s off to the shower. Showers are scary places for people with Parkinson’s, especially if you get caught in one when you’re “off” — the term for when the effect of levodopa has worn off, which for me is about 2–3 hours after it has kicked in. If I find myself “off” in that small, hard rectangle of space, I have to find a way to wash my hair with my eyes open because if I close them, I’ll lose my balance. I struggle to make my sluggish arms perform the back-and-forth motion required to apply shampoo. Toweling off is laborious, combing out wet hair tedious and slow. Suffice it to say, these days I rarely let myself get caught in the shower when I’m “off.” It doesn’t seem safe and also, it can be an intensely disheartening confrontation with my impaired body.
Showered, “on” and ready, I sit at my desk where I lose myself in thought and the arrangement of words, happily leaving my body behind. But not for long — 2 1/2 hours after I felt my first relief from levodopa, my thoughts begin to scatter. I’m squirmy in my chair. My energy flags and then my mood slumps, too, in an everything-I’m-writing-is-crap-and-what am-I-doing-this-for-anyway? kind of way. My hand is slow with the mouse and my typing, which already is a barely respectable hunt-and-peck, is pathetic. When selecting, cutting and pasting make me want to scream with frustration, I lift my 100-year-old body out of the chair and take a second dose of levodopa.
Forty-five minutes later, I’m medicated and it’s lunchtime. The combo infusion of food and dopamine turns back the clock and I am sixty again, maybe even younger. Yay! All things seem possible. Lunch must be carefully timed and considered, however; too much protein will block the effects of my third, 3:30 dose. Eating a hard-boiled egg or chicken breast, for example, almost always guarantees that a walk, even two hours later, will feel like a trudge through three feet of snow.
My couple of hours of “on” time right after lunch are generally when I schedule meetings, social activities or errands — anything requiring physical or social activity. One chore that must be squeezed into the hours when I’m fully “on” is food shopping. A busy market is probably one of a Parkie’s biggest nightmares because it requires so much of what we are deficient in: motor control, dexterity, proprioception, focus. A supermarket that’s over-stimulating and crowded with impatient people is tricky to navigate with a cart and also requires that you pry open those uncooperative plastic bags to stuff in, say, a huge bunch of kale. Bagging groceries at the checkout is also very awkward, especially because I use unstructured cloth bags. Something about the sequence of moves — reaching into the bag with an item, positioning it in the bottom and retracting my hand, all the while trying to keep the bag from collapsing — taxes my dwindling motor neurons. Another everyday task that becomes especially difficult with PD is cooking. Like brushing hair and teeth, chopping, slicing and stirring are sometimes impossible when medication has worn off. Until recently, unless I had plans in the evening, I was taking three doses of levodopa per day, which gave me six hours of “on” time. When I realized I was making dinner in slower and slower slow-mo, I added a fourth dose on most days. The added medication has made it possible for me to revive one of my favorite dishes, risotto, with its 40 or so minutes of continuous stirring. I fantasize that I’ll not only be able to hand-whip cream, but also will have a whole new life after dinner — time now spent talking, reading, writing or watching movies- — that could include who knows what? Dancing, perhaps?
Most everyone with Parkinson’s rides the daily rollercoaster created by the on and off effects of levodopa. I’m lucky that my PD is relatively mild and levodopa is still as effective as it was when I started it five years ago. What has changed is that when it wears off between doses, I’m more debilitated than I was, because my Parkinson’s is progressing. The trough created by “off” periods gets deeper and tougher to pull oneself out of, both physically and emotionally. So taking enough medication to minimize “off” time during the course of the day is critical for mitigating depression and anxiety. There are downsides to taking levodopa more frequently to get more “on” time, however; it’s tricky to schedule meals so they don’t interfere with its absorption and also, more frequent dosing can cause dyskinesia, or involuntary movement. Scientists are developing new levodopa delivery systems that will administer the drug more continuously to reduce “off” time. For example, a pump that’s worn at the waist can infuse levodopa directly into the small intestine so that the drug bypasses the stomach and gets to the brain more efficiently. Also in the works is a “pump patch,” a device smaller than a credit card containing painless microneedles that will deliver levodopa subcutaneously.
While brilliant scientists whack away in their labs at better treatments for Parkinson’s, those of us living with the disease must develop everyday strategies for not letting our condition get the better of us. For some that means carefully managing medications. Psychotherapy can help by providing a place to unpack fears and complaints that we don’t want to subject our families and friends to. And, one of the best tools we have is exercise. I know, I know — we’ve all been nagged relentlessly about the importance of exercise. And I confess, while I love being active outdoors, I’ve pretty much always resented exercise for exercise’s sake. Since my diagnosis, though, I’ve made sure to schedule it into every single day, typically taking a three-mile walk in the afternoon. In San Francisco, a walk has the added benefit of lending beauty to my day with extraordinary hilltop views and sunsets that paint the clouds behind the Golden Gate Bridge. I do Pilates once a week and on days I don’t walk, I hop on an elliptical or exercise bike. OK, not “hop,” exactly, because I still resist. It took some very persuasive science to lure me from my quiet hours of writing into the dreaded sweat zone.
That science is this: So far, exercise is the only intervention we know of that might slow the progression of Parkinson’s. Pretty compelling, right?
We’ve known for a while that exercise can improve cardiovascular health, reduce osteoporosis, alleviate depression and anxiety, and have an anti-inflammatory effect. Now there’s increasing evidence that aerobic exercise might be neuroprotective. Several studies in the last few years have demonstrated that vigorous exercise can reduce PD symptoms like tremor; it has also been shown to improve cognition in people with PD and Alzheimer’s. “Vigorous” exercise is loosely defined as aerobic activity that raises a person’s heart rate and need for oxygen for a sustained period of time — at least 20 -30 minutes, ideally five days a week. The goal of such a regimen is to stimulate the production of BDNF (brain –derived neurotrophic factor), a protein found throughout the brain that promotes growth, survival and plasticity (the ability to change) of neurons. BDNF is powerful stuff; when it’s applied to dopamine-producing neurons in a test tube, the neurons are protected not only from spontaneous death, but also from specific, known neurotoxins. Since BDNF is significantly diminished in the brains of people with PD, the discovery that exercise can double or triple the release of BDNF in the brain is very exciting.
If you know someone recently diagnosed with Parkinson’s who suddenly wants to ride their bicycle across Iowa or climb Mt. Whitney, it’s because they know BDNF increases in proportion to the intensity of a workout. Recently, I decided that if I really wanted to make an impact on my disease progression, I needed to step up my game and do a morning workout in addition to my afternoon walk. The exercise bike and elliptical, relentlessly boring torture-masters that they are, have become my new investment counselors. Every morning that I don’t get on one of them and keep up my heart rate, I picture the stores in my brain going out of business.
Where there’s strong incentive, there’s productivity and its reward: feeling — even if only intermittently — like you’re winning. But maybe it’s not so much about winning as it is about feeling like you’re not losing. Just as levodopa addresses the ebb of dopamine that makes people with PD feel greatly diminished, so too can exercise and staying engaged with the world help to prevent fear and depression from sapping our vitality.
Of course, this strategy is relevant for all of us as we age. Everyone, healthy or not, harbors fear about what the last decades of their life will bring. Sometimes this comes out in indirect ways. A few years ago, an older friend, 86 at the time and in excellent health, visited his friend who was dying. “He’s remarkable,” my friend told me. “He’s had terrible cancer for three years and he’s never made any of us feel bad about it. He’s a great example of going out gracefully.” His words revealed his wish for how his own death would go: not messy with emotion, not scary or demanding of others. My friend didn’t fight in a war and even by age 86, had had little exposure to the intimate details of illness and dying. His own parents’ deaths were sudden and without warning: His father died in a plane crash and his mother slipped away at 94, napping in her own bed after balancing her checkbook and eating a grilled cheese sandwich and a Haagen Dazs ice cream bar.
We are drawn to death’s neatness in such scenarios. When we find ourselves making gloomy predictions about our health, someone will often throw out, “Or, we could get hit by a bus tomorrow.” It’s a violent suggestion, but we must find it soothing both because it reminds us we can’t fully control what will ultimately kill us, and because a fatal accident would relieve us from a more likely descent into decrepitude involving such indignities as memory loss, bodily functions gone awry and hospital gowns that gap in the back.
Most of us will avoid getting hit by a bus. And, unless we’re living with a progressive disease, we can imagine that death-by-grilled-cheese-and-Haagen Dazs at age 94 is possible. Anyone with the good health to entertain this fantasy should never, ever take it for granted. The rest of us will be working hard not to imagine a life too truncated — walking, running, cycling, swimming, dancing and boxing our fear into the margins of our story.