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.
Make a follow-up appointment in six months,” my movement disorders specialist, Dr. Bright, told me at my first appointment with him. I walked out of his office with a life-changing diagnosis, relieved that I didn’t need tests, medication or other interventions, but in a kind of stupor, wondering how I was supposed to fold this new knowledge about myself into the fabric of my everyday life — for the next six months!
It reminded me of leaving the hospital with a new baby: Where were the operating instructions? What would happen tomorrow when I wouldn’t be surrounded by health providers? Next week? Ten years from now? Fortunately, with a baby, a few weeks after the birth there is that much-anticipated newborn checkup with the pediatrician who smiles reassuringly when you stumble to her, cradling the mysterious creature who will be your responsibility for the foreseeable future.
The six-month Parkinson’s follow-up is standard. Patients typically see their MDS twice a year during the first five to ten years after diagnosis. At least after my diagnosis, I was confident I’d left the hospital with the right baby. Hadley couldn’t be sure what she was carrying around now, and months would pass before she’d learn more. When fear is involved, too much time becomes the enemy.
Except for the hour or hour and a half per year we spend with our MDSs, Parkinson’s patients are left on our own to develop coping strategies. Over one million people in the U.S are afflicted with PD and about 60,000 new cases are diagnosed each year, yet we are only just beginning to see the kinds of resources for Parkinson’s patients that are available at cancer centers, where a team approach promotes a cancer patient’s physical and emotional wellbeing from the time of diagnosis. Comprehensive PD resource centers that do exist largely have been created not by medical teams or hospitals, but by ambitious physical therapists or Parkinson’s patients themselves. Three that were established by our Facebook group’s members are Cleveland’s InMotion, co-founded by Karen Jaffe, Atlanta’s PD Gladiators, founded by Larry Kahn, and ParkinGo, founded in Victoria, Canada by physical therapist Jillian Carson. Young onset PD (YOPD) patients especially are not content to sit back and wait to see what another six months or six years will bring; they are determined and proactive about their disease. Centers that offer a range of exercise and movement classes tailored to people with PD, informational sessions and a supportive place to come together with others with PD are springing up around the world.
In addition to resource centers, three of the U.S.’s most prominent Parkinson’s Foundations, The Michael J. Fox Foundation, The Brian Grant Foundation and The Davis Phinney Foundation, were also started by people—in these cases, celebrities—with YOPD. The Fox Foundation is a leader in funding drug trials, research into biomarkers, and the search for a cure, having raised $450 million since 2000. Davis Phinney, an Olympic medal-winning cyclist who was diagnosed with YOPD at age forty, started his foundation in 2004 with the mission to improve quality of life for people living with PD. Diagnosed with YOPD at age 36, NBA athlete Brian Grant founded his Portland, Oregon organization in 2008. Many in our Facebook group are involved with these foundations, as well as with several other national Parkinson’s organizations including the National Parkinson Foundation, Parkinson’s Action Network and the Parkinson’s Disease Foundation.
Traditionally, patients have participated in clinical trials and haven’t studied and managed their own health care. The paradigm has shifted as patients become better informed. Sara Riggare, a Swedish engineer in our group who was diagnosed with PD at 32 in 2003, is dedicated to creating technology that will change how people live with PD. A smartphone app she’s developing will allow patients to track movement symptoms and response to medications. “My mission,” Sara says, “is to give individual patients the tools to improve their own healthcare experience. I need to show that my research can change things for me and for the world, and that it can make an immediate benefit, not in 10 or 20 years.”
Entrepreneurs have jumped into the self-care movement. Last year, I was a tester for an app being developed by a local startup that streams a personalized cycling protocol to my phone, then stores my workout data so I can track my progress, and eventually, any benefits of the exercise. The workouts, which I do on a stationary bike, are based on the results of studies like the one done by Dr. Jay Alberts at the Cleveland Clinic that demonstrated that cycling, when performed at a certain level of intensity, might be neuroprotective. Using a tool like the cycling app not only benefits my health, but also can provide data for researchers.
Much of the education Parkinson’s patients seek to fill the large gaps between appointments with our MDSs can be received without leaving our laptops. The benefits of an online support group cannot be overstated. Ours offers advice about all aspects of our disease — feedback that will be corroborated or debated among members with rigor and intelligence. There are no boundaries to the issues people will raise, whether it’s how to talk about PD with their children, sexual dysfunction, or if they should accept a job offer. An exchange might look like this:
Q: I’m wondering if anyone can offer some advice on what to do when you freeze in public. That happened to me tonight. My husband and I had gone out for dinner and when we were leaving I couldn’t go out the door. I just stood there for the longest time. It was so embarrassing!
A: I have freezing episodes that can last a half hour. It is my most disabling symptom. Parkies have many different tips and gadgets, like laser pens or a sort of visual cue. You might find that if your husband taps you on the shoulder or otherwise distracts you, it may break the freeze. I find that if I see myself (minds eye) as walking fluidly through the doorway, bam- no freezing.
Q: Going through the procedure of trying to collect disability insurance. After review of my application and additional third party questionnaire, they said they need even more medical evidence of my condition. (Records from 2 prestigious neurologists from highly regarded hospitals were sent). I have had PD 8 years. Give me a break. But they have scheduled a bone and back examination. Not neurological. Is this common?
There were ten responses to this post about disability; each was packed with useful information and encouragement.
Another important way in which our online group picks up where our health providers leave off is comparing notes about our symptoms, histories and response to medications. Sometimes, we discover something together that might not have seemed significant to us individually. For example, a member in her late 30’s posted that she experienced her first PD symptoms immediately after she stopped taking The Pill, which she’d been on for seven years. Several years after diagnosis, she realized that during the week before her period, the efficacy of her PD medications was cut in half. She resumed taking The Pill and discovered that with the added hormones, she could cut way down on her PD medications. Within a few hours, thirteen women in our group had responded to her post, some reporting that immediately after going through menopause — especially in cases of early menopause — their PD symptoms began. Others wrote that they experienced big fluctuations in their PD symptoms that corresponded with their menstrual cycles. Scientists know that estrogen is to some degree neuroprotective and that this might explain why more men than women get PD. But our posts might suggest something more: that a precipitous drop in estrogen could trigger Parkinson’s in people who might be genetically susceptible to the disease. Most neurologists are not yet addressing the effects of hormone fluctuations with their women YOPD patients, but some in our group have already pressed their doctors to prescribe hormonal treatment, with good results. This information sharing could be an important contribution to PD research; it seems inevitable that the effects of estrogen, progesterone and testosterone on dopamine will be in PD news.
One recurring topic in the Facebook group is deep brain stimulation surgery (DBS), which a fair number of members have undergone. In time, when levodopa and other medications become less effective and if living with uncontrolled movements becomes unmanageable, DBS can be an option. In 2014, Alim Louis Benabid, MD, PhD, and Mahlon R. DeLong, MD, won the Lasker-DeBakey Clinical Medical Research Award — regarded as the Nobel Prize of medical research — for this breakthrough procedure. Since the 1990’s, tens of thousands worldwide have undergone DBS, which involves implanting an electrode into the brain that targets motor circuits that are not functioning properly. An impulse generator similar to a cardiac pacemaker is implanted under the collarbone and sends electrical pulses to block the signals that cause some PD symptoms. With a controller, the patient can turn the device on and off and check its battery, which lasts about five years before needing replacement. DBS is not suitable for all PD patients, and it can’t stop Parkinson’s progression, but it has dramatically reduced symptoms, improving the lives of many. For those considering it, having access to many others who’ve gone through the procedure is vitally important. Whether or not to have brain surgery is not your run-of-the-mill decision!
Q: To DBS or not to DBS? This is driving me crazy! Do the benefits outweigh the risks?
A: For me the answer is yes! I had DBS two years ago and it has given me my life back. In addition to controlling my tremors, I have drastically reduced my meds.
Q: When you say, “got my life back,” how bad were things? Just asking because I’m considering DBS but don’t want to do it until I have no other options.
The responder explained that he’d had DBS because he was having trouble with his medications. He was taking a lot of levodopa, which made him nauseated. Only Mirapex controlled his symptoms but it caused compulsive eating, shopping and sex. He gained sixty pounds and his house was full of things he’d bought and didn’t need. He was unhappy, his wife was unhappy, he said, and his kids were driving him crazy. After DBS, he got off the Mirapex, only purchased things he needed, lost 40 pounds in one year and started enjoying his family again.
Any of us with Parkinson’s imagines the possibility of needing DBS surgery some day and hearing firsthand the specifics of how it’s helped others is very reassuring. But we’re not always preoccupied with scary-as-hell decisions and drama; sometimes, members give us wonderful reasons to celebrate. I remember exactly where I was—in a parking lot—when I read this joyful post on my phone:
Hi All!!! I’m a mama! 6lbs 4oz and perfect! It has been a rough 5 days but we are going home TODAY!!! We couldn’t be happier!
Perhaps the most important role our online support group plays is as a full-time community of empathizers. No concern is ever ignored and there are no holidays or closing times. Occasionally, group members have the opportunity to meet in person, often at a Parkinson’s event. When there’s a group of us, a kind of team-spirit, light-heartedness prevails. It’s different meeting one-on-one. The first two times I got together with someone in our group , we arrived at our meeting place as we would for any date with a stranger: smiling, exchanging polite greetings, slipping into chairs opposite each other, doing our best, as we do every day, to appear as the “okay” youngish people we still are. Within minutes of starting our conversation, our eyes welled with tears. Because it was okay to not be okay. Because even though we didn’t really know each other, we knew.
Of course, being connected with so many people with Parkinson’s can be frightening and painful, too. Occasionally, someone will post alarming news that will sock me in the gut if I’m having a particularly bad day: their husband is leaving them, they can no longer hold the job they love, they had a dangerous reaction to a medication. Feeling their pain can trigger my blackest fears: Will I lose my mental capacity? Will I end up alone? This is not a surprise; when I joined the group, I understood that I would be face-to-face with every version of the beast that is Parkinson’s.
What I wasn’t prepared for was that there would be even beastlier beasts at the Parkinson’s Halloween jamboree: although all of us had been given a PD diagnosis, not everyone would turn out to have Parkinson’s.