Shakin' Street — A Parkinson's Blog

Several years ago, my friend Marilyn* was diagnosed with breast cancer. One of the rare bright spots in the experience was her interaction with the Providence Oncology Nurse Navigator program.

”Within a day of being diagnosed with cancer,” she said, “a navigator called me. She checked in on me frequently.”

According to the Providence Oncology Nurse Navigator web page, the program can:

• Be a point of contact for patients, families, and care partners from diagnosis through the end of treatment
• Help clarify details of patient’s diagnosis and medical information
• Help identify and remove challenges to care
• Help patients understand the roles of members of their care team and assist in communicating with them
• Help to review patient’s questions and concerns before doctor appointments
• Connect patients with research clinical trial resources
• Refer patients to Providence Cancer Support Services (social work, resource specialists, support groups, nutrition, integrative medicine, financial support) and community resources (transportation, childcare) as needed
• Assist with transition from cancer treatment to cancer survivorship with information, support, and referrals to resources

Marilyn told me she had her own Nurse Navigator, with a direct phone line.

In the early days while she was dealing with the shock of her diagnosis, the Navigator offered help connecting with a support group, gave her nutrition assistance, referred her to a store at Providence with supplies, and alerted her to naturopathic options such as accupuncture.

“I felt like I was wrapped in a warm blanket,” she said.

Support? Neurology’s a Little Different

A couple of weeks ago, Marilyn learned she has Parkinson’s disease. Although her neurologist is in the same health system as her oncologist — Providence — the treatment she has received from Neurology is very different.

”When I got the PD diagnosis I was sent home with a brochure and left to figure it out on my own…” she says. “I’m still struggling to figure out if I should start the medication. Any conversation with [the office] is a one line answer. It’s a shame that our clinic doesn’t have someone who we can have a real conversation with.”

Marilyn and I work with the same Neurology staff at Providence, and my experience has been similar. Although my movement disorder specialist and nurse practitioner are thorough, knowlegable and engaged at appointments, communication is much more difficult once we leave the office. The online communication portal can get us short basic answers to occasional questions.

The waiting list for a neurologist appointment in Portland — a city with several big hospital systems — can stretch six months or longer. And unlike Oncology, Providence’s Neurology department doesn’t have a Navigator program to talk to.

My friend and fellow PWP Steve, who also goes to Providence, thinks it comes down to dollars and urgency:

Not to be cynical, but as Jerry Maguire said “Show me the money”.  There’s big money in cancer treatment, with expensive surgeries, chemo, and radiation, which all have to be done soon after diagnosis.  

He’s got a point. A single cancer patient can generate hundreds of thousands of dollars in revenue to a hospital. Oncology can be a profit center, so it makes economic sense to use some of that revenue to build a support infrastructure.

Parkinson’s? Not so much. Without a cure or even an effective drug for slowing the advance of the disease, there isn’t much urgency to get someone in right away. And the most common medication is a 50-year-old generic. Not much money there.

Exercise can make a significant difference, but many hospitals let others run the exercise programs. Kimberly Berg, who runs the Rebel Fit Club gym for Parkinson’s patients, thinks she knows why:

Exercise is the only thing we have to date to change the brain (not discounting meditation) [but] doctors send you on your way to PT and me to do the education. We spend more time with the “patient” and can usually keep them moving and upbeat. 

Hospital systems don’t really want to do a whole exercise program. It’s a ton of work and really expensive.

Searching online, I did find a few medical systems in the US with Neurology Navigator programs — Valley Health in New Jersey and Pickup Family Neurosciences Institute in California have them. But they’re comparatively rare.

An informal, unscientific survey of folks at my Parkinson’s gym tells me that the other systems in my hometown don’t have Navigators for neurological diseases, either.

When I described the Navigator concept to my friend Lars, a patient at Kaiser for several years, he said, “If Kaiser has anything like this, they’ve never told me about it.”

My gym buddy Eddie, who has seen several neurologists at Oregon Health & Science University, says they don’t have anything like a Navigator program. He expressed his exasperation with the system:

The more I become educated about this disease, the more infuriating it is.  PD requires an evaluation of everything about a person: what they put in their bodies (food, drugs, supplements); what exercise they have been/are doing, their psychosocial situation, and what they’ve been exposed to, e.g. heavy metals, pesticides, etc.. Almost none of that happens with neurologists in a meaningful way. Additionally, there is zero education on supplements, meditation or other complementary therapies, how much and what kind of exercise to do, or anything else.

Portland is lucky to have organizations like the Brian Grant Foundation and Parkinson’s Resources of Oregon to provide education, support groups, events and exercise programs to PWP’s and caregivers. In smaller markets, patients may find themselves adrift.

Part 2 Next Week: Addressing the Problem

An Idaho activist and entrepreneur is working to launch a service that may help fill in the gap between the support Parkinson’s patients need and what we’re getting now. Stay tuned for an article on that next week.

*Some names in this post have been changed to protect patient privacy.

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BONUS FOR THOSE WHO READ TO THE BOTTOM — BLUEGRASS EDITION

Yonder Mountain String Band covers Ozzy Osbourne’s “Crazy Train.” According to some YouTube comments from people who say they were there for this performance, it happened at approximately 4:30am. Given the late (or early) hour, the band and audience are quite frisky.

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Palmyra delivers their take of Talking Heads’ “Psycho Killer,” with mandolin and banjo.

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