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.
After learning Jane’s story, it occurred to me that because multiple system atrophy (MSA) often shares symptoms with Parkinson’s, it was very likely that there were others besides Hadley in our Facebook group who might face Jane’s prognosis. And, yikes — what about me? For the next few days after reading Jane’s letter, the offhand comment made by the neurologist who’d diagnosed me kept popping into my head: “We’ll want you to have a tremor soon so we know it’s not something worse than Parkinson’s.” I sent an email to my MDS, Dr. Bright: “Should I be worried that I still don’t have a tremor? Could this indicate something worse than garden-variety Parkinson’s?” Dr. Bright responded within an hour: “About 25% of patients with PD do not have tremor. I am certain you have garden-variety PD.” I remember how powerful his confident answer was. I trusted his every word — I needed to, to keep my anxiety in check.
But then there was Hadley. Could MSA be her fate? If so, judging by the course of Jane’s illness, there were good reasons for Hadley to get a clear diagnosis as soon as possible so that she wouldn’t be subjected to unnecessary or potentially harmful tests, procedures or medications. Because Jane had been misdiagnosed, she endured DBS brain surgery — enormously helpful for many with Parkinson’s, but typically resulting in poor outcomes for people with MSA.
Hadley had a vacation planned for that June of 2012 with John, Sarah, her mother, Jana, and her stepfather, Charlie, at the Russian River in California, a little over an hour from where I live in San Francisco. I suggested she have a consultation with my Dr. Bright, and she agreed it was a good idea. I wrote to Dr. Bright explaining that Hadley had been diagnosed with Parkinson’s, but there was some concern about MSA that was initially raised by her MDS. I told him she had orthostatic hypotension, some autonomic symptoms as well as a positive Babinski reflex and hyperreflexia, signs not typical in Parkinson’s but typical of MSA. Dr. Bright generously agreed to fit Hadley into his schedule when she was in California, as I knew he would.
From our first meeting in 2010, I trusted Dr. Bright almost blindly. Two and a half years later when I asked him to meet with Hadley, I felt certain he would see her illness clearly and wouldn’t dismiss her concerns the way her MDS, Dr. Youngman, had. I admit to having had fantasies that he would swoop in on the proverbial white horse and rescue her from a terrible fate, that fate being either MSA or continuing to live with uncertainty.
On the day of her appointment with Dr. Bright, Hadley drove to San Francisco from the Russian River vacation rental with her whole family. We ate lunch at my neighborhood sushi restaurant — Sarah’s request, and a very adventurous one for a five-year-old from a land-locked state, I thought. Hadley was quiet and barely ate, instead helping Sarah to navigate her lunch. Jana, a lively and inquisitive 71-year-old, was a delightful conversationalist. Charlie, mild-mannered and in late-stage Parkinson’s, was suffering from the cognitive effects of PD that slowed his speech and made retrieval of words difficult. He sat quietly as Jana occasionally helped him eat. John, always sweet, sat in the middle, dividing his attention between us. Not exactly the carefree mood of a family on vacation, I thought a little sadly, but how could it be? After lunch, we dropped Jana, Charlie and Sarah in Golden Gate Park and I drove Hadley and John to Dr. Bright’s office. Once in the waiting room, Hadley filled out forms and we chatted aimlessly, nervously until Dr. Bright came to get her.
A little over an hour later, Dr. Bright, Hadley and John returned to where I was in the waiting room. After Dr. Bright left us, I asked Hadley, “What did he say?”
“He says I don’t have MSA.”
Startled by the decisiveness of this news, I shivered and gave Hadley a big hug.
When I stepped back, she smiled. “I know — it’s amazing!” she said.
But she was more reserved than I expected her to be as we rode the elevator and left the hospital. In the car, trying to cloak my skepticism, I asked her, “So what did he say were the reasons you don’t have MSA?”
“You know, I wish I had had the presence of mind to ask him. That’s the thing about me. I get so nervous and distracted…and he was busy checking out everything. I should have asked him that. Darn.”
With me, Hadley was always on top of her game, forthright and articulate about her health situation. I knew she would want to know exactly what Dr. Bright saw or didn’t see that made him rule out MSA. But I also knew how flustering a doctor’s appointment could be; I’ve often kicked myself afterward for not asking more pointed questions. I told Hadley Dr. Bright was great about emailing and suggested she write to him. That night, when I was home and she was back with her family at their vacation rental, she and I came up with the questions she wanted answered and she emailed him.
A couple of days later, my husband, Lewis, and I drove to the Russian River to spend the afternoon with Hadley and her family. The cottage they’d rented had a lovely patio and a lawn with large trees overhanging the Russian River. But I was so preoccupied with wanting to know how Dr. Bright had responded to Hadley’s email that the pastoral setting couldn’t work its magic. Everyone seemed tense as we put lunch together, and Hadley didn’t seem at all celebratory, like someone who’d just been released from a death sentence. I couldn’t help noticing how much effort she was putting into making everyone happy — Lewis and me, Sarah, her mother and Charlie, who was entirely undemanding but with his limited ability to speak, required special attention. I could see how tough Jana’s role was, caring for Charlie with his advanced Parkinson’s. The scene in the kitchen was a sobering view of what lay ahead for Hadley, me and our families.
Finally, after lunch, Hadley had a chance to show me the email she’d received from Dr. Bright. In it, he explained that Parkinson’s can have many presentations and that he’s had many patients who’ve had one atypical symptom and have “obsessed” as to whether this meant they had atypical Parkinson’s. He warned her that this mindset could be “very destructive.” Then he went on to say that her symptoms were typical of PD, that MSA was rare, and that to his knowledge there have been no cases of MSA diagnosed before the age of 40.
I was shocked. There was that insulting word again — “obsess” — that Dr. Youngman had also used with Hadley. I looked up at Hadley and she smiled. “I don’t know, Catherine,” she said. “I really liked him and I feel better knowing he doesn’t think it would be possible for me to have MSA, but…” she trailed off.
“I can’t believe this,” I said. “Those are his reasons — ‘MSA is rare?’ And, not knowing of anyone under 40 who has been diagnosed with MSA? And…” I stopped. It was the wrong place to vent.
“There sure are cases of people with MSA in their 30’s,” Hadley said calmly. “All you have to do is look on the Internet. I want to believe him, but I wish he had a better reason for saying I don’t have MSA.” She put her hand on my shoulder. “I don’t want you to feel like this was a waste of my time,” she said. “I’m really glad I went to see him. This shouldn’t come between you and Dr. Bright because you’ve really liked him.”
In her usual way, despite this upsetting chapter in her search for a diagnosis, Hadley was taking care of my feelings. Suddenly, I felt embarrassed about how I’d put Dr. Bright on a pedestal. “I just don’t understand,” I said, “why he would say such a confident ‘no’ when he could’ve said, ‘I can’t say that it’s MSA for sure, especially since I’ve only seen you once, but it’s possible.’”
“I know,” Hadley said, sounding far away. “I guess the reality is, time will tell.”
I hated those words, time will tell — maddening words of resignation!
Hadley, her family, Lewis and I piled into our cars and drove to a nearby vineyard where we sat outside at a picnic table and had chocolate and champagne in the soft, early June air. It was my birthday, and Hadley wanted to celebrate. I tried to soak in the wine country afternoon: the warm sun and rippling green vineyard, the rose-covered pergola, the delicate sweetness on my tongue. But they would barely penetrate. I could think only of how fleeting such pleasures could be for Hadley.