“This disease can be a hard disease, but there’s a whole lot of hope right now, too, because of a growing understanding of how it manifests,” said Sarah Jones, chief executive of the Parkinson & Movement Disorder Alliance, and a member of the initiative’s steering committee. “This group balances truth-telling with power. Information is power, along with knowing what to do with it.”
Others are invited to join the conversation by signing up for initiative updates and news.
Parkinson’s is a progressive neurodegenerative disorder that predominately affects dopamine-producing nerve cells in an area of the brain called substantia nigra. Experts estimate that it affects a million people in the U.S. and 10 million worldwide.
Because of the variety of symptoms, patients usually see a number of specialists over the course of their disease, including neurologists and movement-disorder experts.
Too often, physicians focus on visible symptoms such as tremors, slow or jerky movements, limb rigidity, and walking and balance problems, said Matthew Stern, a professor emeritus of neurology at the University of Pennsylvania’s Perelman School of Medicine. Meanwhile, doctors often focus on depression and constipation in judging quality of life. Stern was chair of the Live Well. Do Tell steering committee.
“It’s no longer about just walking into an exam room. It’s about you taking control of your own health care,” said Stern, former director of the Penn Parkinson’s Disease and Movement Disorders Center. “But a byproduct will be increased doctor awareness as well. There’s a disconnect between what a patient is saying and what the doctor is hearing.”
Although off times can cause movement problems and complications such as difficulty swallowing, they also can lead to bouts of anxiety and sadness — less-evident symptoms that often go undiagnosed. Up to 80 percent of Parkinson’s patients experience off times daily, Jones said.
Because movement and other difficulties return during off times, patients can find it hard or embarrassing to discuss these periods. Often, they aren’t sure how to explain what they feel about them.
“The complications of off times really lend themselves to misunderstandings, and can also really overwhelm people dealing with the disease,” Jones said. “This organization raises a voice in terms of understanding what off time is, and the fact that it varies.”
These periods can also leave patients with feelings of inadequacy or failure. “They feel like they aren’t managing as well as they want to,” Jones said. “It can be tied to stress or not sleeping well. So, normalizing it is very helpful. If there’s no way to talk about it, it can be seen as a criticism or can create challenges, as opposed to being a part of living.”
Options for managing off times include diet and medication adjustments and, for some, surgical approaches such as implanting deep brain stimulation devices.
Acorda has asked the U.S. Food and Drug Administration to approve a treatment it developed for off times. Inbrija is an inhaled powder formulation of levodopa designed to act quickly when the effects of oral levodopa and carbidopa wear off.
The FDA is expected to decide whether to approve inbrija by Oct. 5. Acorda’s application for approval was based partly on the benefits seen in a Phase 3 clinical trial (NCT02240030).
“Off periods greatly disrupt the lives of people living with Parkinson’s, and there is significant need for new treatments in this community,” Dr. Burkhard Blank, Acorda’s chief medical officer, said in a press release.
Most Parkinson’s patients are diagnosed between the ages of 55 and 60 while still employed, leading to panic and fear. That’s when doctors need to reassure them, Stern said.
“Patients think they’ll be in a wheelchair in five years,” he said. “So, step one is educating a diagnosis. When I was in clinical practice, I spent a lot of time undoing what they’re told and what they’ve learned on the internet.”
Steve DeWitte was 48 and a Special Olympics regional director when he received his diagnosis. Two years earlier, his symptoms had begun with a shaky left pinky finger. The tremors spread to more fingers and then his entire left arm. He eventually also had bouts of fatigue, sleeping difficulties and constipation.
“I didn’t know what Parkinson’s was, so I didn’t know how to react or not react,” said DeWitte, a resident of New Preston, Connecticut, who founded Connecticut Advocates for Parkinson’s. “Then I said, ‘OK, I’ll accept it.’ After that, I did my own research and joined support groups to find out what steps I had to take to live a quality life.”
Now 61, DeWitte said how he feels about his situation can change hourly. Overall, he said, he is able to manage his disease, including off times, with medicine, diet and exercise. He’s been involved with the Live Well. Do Tell effort from the beginning.
“It’s a great program for individuals as they start examining how to live with Parkinson’s, and how doctors can better communicate with you,” said DeWitte, who is married and has an adult child. “I give my interpretation of how we’re living with this condition, how we talk to physicians and how they listen, and how they can be more clear with us.”
He thinks the initiative has helped create a more honest dialogue between patients and physicians. “Patients feel more comfortable coming out with what they experience,” he said. “We’ve had wonderful sessions leading us through how to prepare for our visits, and getting helpful hints about how to make each visit more impactful. It makes it easier on the physicians, too.”
Insights into these sessions are available for downloading.
Jones said the bottom line with Live Well. Do Tell is that it challenges everyone in the Parkinson’s community to do a better job at explaining the disease and its symptoms, and it challenges patients to advocate for themselves.
“It feels like this is the first time that a large organization has pulled together a really diverse multidisciplinary team of people to have a conversation about more than motor symptoms,” she said.