An interview with Martha Nance, MD Medical Director at Struthers Parkinson’s Center on April 14, 2024.
Biography
I graduated from Yale University and got my MD from Virginia Commonwealth University, then went to the University of Minnesota for Neurology residency and a fellowship in Clinical Genetics, then worked at the Minneapolis VA Hospital for a few years before joining Park Nicollet Clinic, which is now part of Health Partners, in 1997. I became the Medical Director of Struthers Parkinson’s Center (a longstanding Parkinson Foundation Center of Excellence) in 2000, and wow! now it is 2024!
Can you tell me more about your organization?
Health Partners, Wikipedia says concisely, “is an integrated nonprofit health care provider and health insurance company…” Park Nicollet Clinic includes a number of primary care clinics, specialists, and Methodist Hospital. The concept of Struthers Parkinson’s Center was the brainchild of Dr. Paul Silverstein and Ruth Hagestuen RN, in the late 1970s, built around the idea that it was of value to do rehabilitation therapy for people with Parkinson’s disease, which at the time was thought to be a silly idea. The clinic was based in the Rehab Department at Methodist Hospital for many years, until in the mid 1990s, the Struthers family provided the philanthropic support to turn a free-standing same-day surgery center in Golden Valley MN (a suburb of Minneapolis) into a Parkinson’s Center. We became a NPF (now PF) Center of Excellence in 1997 or thereabouts, reflecting our comprehensive and multidisciplinary approach to care, social work services with strong outreach (supporting something like 80 support groups in the Upper Midwest), educational and support programs for patients and families, and clinical research. And we still do all those things today. We have 5, soon to be 6, neurologists on staff, and PT, OT, speech and music therapy, social work, nursing support, a neuropsychologist, and a research team, all working side-by-side in a building where all we do is see people with PD and related disorders.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
I was trained in Neurology and in Genetics and first became interested in Huntington’s disease, a genetic neurodegenerative movement disorder, but when I came to Park Nicollet, it was very easy to include Parkinson’s disease, which is now what I spend 90% of my time working on. Clinical research, which is of interest to me, is asking similar questions and using similar approaches in the two disorders.
What type of goals do individuals with Parkinson’s have when working with you?
My goal for them is for them to become the masters of their own lives (eg, understand how medications work and take charge of how to use them, do the exercise that best preserves brain cells and improves general health, and flip negative thoughts [gee this is a bad disease and it is only going to get worse] into positive ones [well, given that they tell me this will get worse, I guess today is going to be the best day of the rest of my life, so I had better get out there and enjoy it]. In the later stages of the disease, I think I am known for being honest about what is happening and what is likely to happen in the next year, two years, five years.
What type of training and how long are the programs?
Our signature program is a “Team Assessment Clinic”, where patients spend the better part of the day with us and see PT, OT, speech, and music therapy, nurse, social worker, and doctor all on one day (or sometimes split into two half-days). It is exhausting but gives the person a more complete view of their disease and what to do about it. And over the course of the disease, we revisit whoever on the team needs a revisit. Our newest doctor has a background in Palliative Care as well as movement disorders and is helping us to build a more structured approach to the later stages of the disease. We follow people for the entire course of their disease.
What effect can it have on an individual with Parkinson’s?
The best thing is when people get bit by the exercise bug. So many folks with PD are healthier people 3 years AFTER a diagnosis than for the 5 years BEFORE the diagnosis if they get on the right medications, start exercising, quit whatever bad habits they might have fallen into during times of stress, and have a renewed emphasis on LIVING.
What would you like to see as a future goal for your programs?
Later this year, we are adding a doctor with expertise in dementia, which is a challenging symptom to manage. I think that there will be more high-tech approaches to PD as we move through the 21st century (computer-brain interface kinds of treatments, more devices to monitor symptoms, “smart” stimulators, possibly infusion therapies), so making sure that our center is equipped to keep up with those kinds of things will be a challenge.
What events do you participate in?
I/we participate in the many programs that we do ourselves (a seminar series for Parkinson’s Awareness month, a fall conference, classes of various kinds for patients and caregivers, exercise classes, support groups). We participate in local PF Chapter events, such as their annual walk. I speak when asked at local or regional or national events of various kinds. We are a Parkinson Study Group site, and I co-chair that group’s Genetics and Environment Working Group. PF has an annual meeting for its COEs, which we attend. The local APDA chapter hosts kind of a city-wide patient event which I am sometimes invited to speak at. And so on…
How does this also assist the caregivers?
We have an on-line caregiver support group, and also a monthly “caregiver skills-building” class that cycles through the year. November is Caregiver Awareness month, and we host a caregiver luncheon for…caregivers.
How can someone get in touch? What is your website?
I don’t have a personal website, and the Struthers Parkinson Center website is buried within the Health Partners and Park Nicollet websites. But it is pretty easy to find the center through the Parkinson Foundation COE listing. I am on LinkedIn.
How can others also become advocates for awareness?
My mantra is that if you give people a firm piece of ground to stand on, they will go off and do whatever it is they are good at. If that is Advocacy, terrific. Some people write books (including me, see below). I had one patient who wanted to do a fundraising concert (she was a concert violinist) and roped me into playing with her and her Minnesota Orchestra colleagues for an annual event for several years. Another patient organized a Pedal and Roll event, and they still have an active patient-led biking group. Another one put on a neighborhood Christmas light show that got to include 42,000 some-odd lights, one for each person with PD; this was written up in the local newspaper and included on Christmas light tours (do they do such things in other parts of the country?) Another one worked as a ski instructor until she was 80, 15 years after her diagnosis (I would suggest that she spent much of her time NOT on firm ground!). So, different people, different things. But the more that you do things, the happier you are, and the more inspirational to other people.
Have you done anything new or different or interesting for Parkinson’s disease recently?
Why, yes! I just published a book with co-author Steve Witebsky, entitled “Grandpa Used to Drive Big Trucks”, which attempts to explain Parkinson’s disease to young children. The book just came out on Amazon! I am quite pleased with how it turned out, and hope that people will a) buy a copy, b) find it useful, and c) if you like it, it’s like Uber. You are supposed to write a review saying how great it was, and then it moves up in the Amazon rankings. All this is a new thing for me, and I am more interested in a) and b) than c), except it is helpful to have some idea if what we wrote connects well with others.
In your opinion what is the key to effective advocacy?
Do something you are good at, and then you will succeed, and that will in turn shine a brighter light on Parkinson’s disease.
How can we better fundraise to support a cure for Parkinson’s?
For me, and my center, the challenge is to get through to the younger generation, the George Ackerman’s, the children of the people who have PD, as they are likely to have more disposable income than the parents who have to pay for residential care and medications and so on. But that is my concern about local fundraising at the hundred thousand or million-ish dollar level to support a center. I think short of being a celebrity like MJFox, it is not possible to raise the kind of money needed to support a cure, from lay people with PD. That level of research requires huge investments from the government and from pharma/device/tech companies, and years of work. MJFox has been able to raise enough money to kick-start programs, and to incentivize companies to get engaged. The other thing that could help is to stand alongside bigger diseases (the only relevant bigger disease is Alzheimer’s disease), to make the case that you may get insight about Alzheimer’s by studying Lewy body disease, and vice versa. Patients, families, and researchers tend to be rather siloed in their thinking (‘do research on MY disease”), but it is possible that the critical novel insight will come from someone on the side rather than someone who has been trudging along the beaten path for years.
However, my other mantra is that you cannot do clinical research without FIRST providing state of the art care for patients and families. So improving the care, or access to care, or both, in communities around the country might indirectly support research.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
Me personally…I exercise insufficiently, eat reasonably well, and garden and write and have an obsession about photographing the almost 40 types of dragonflies and damselflies I have seen in my front yard…
Why should people who don’t have Parkinson’s care about this?
I think in many communities this team-based model of care is eroded by time and money constraints, corporate goals etc. Parkinson’s is not the only disease for which optimal care includes more than going to the doctor once a year for medication refills (how about…any chronic disease….how about aging in general?)
Have you had any family members or relatives affected by Parkinson’s disease?
No
If you had one song that would tell us more about you or represent your life which song would it be?
one song…really? Something people could relate to would be one line from a song…speaking words of wisdom—let it be.
on a more obscure, and perhaps people would find it depressing, note–since my daily journey with any given patient only ends with their death, I am particularly moved by pieces that illustrate death beautifully, and two come to mind–Beethoven’s last piano sonata (#32), and even more, the last movement of Olivier Messaien’s Quattor pour la Fin du Temps, which I played at a concert with my patient a few years back. I have never heard a piece that so eloquently describes the last moment of life as it recedes into… space …. and the infinite….
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Here’s what you can do that will get you 90% of the way there: eat right, drink enough fluids, exercise, rest when you need to, and do things that you LIKE to do (as long as they are legal) with someone you care about/who cares about you. If you are doing all those things, you will definitely influence your disease in a positive way!