Background – Parkinson’s is a progressive, degenerative condition that requires a comprehensive approach to care. But the fragmented U.S. system of health care reimbursement, multiple managed care networks and referrals is not designed to guide patients toward an integrated, top quality care team to meet your individualized needs. A Parkinson’s patient must take on this responsibility, with help from family, friends, other patients and support organizations.
In building a Parkinson’s care team, it is important to remember that medications prescribed for Parkinson’s care generally do a good job controlling symptoms (stooped posture, temporary freezing of limbs, shuffling gate, tremors, back pain, etc.) but do not slow the progression of the disease. Research studies going back to the 1980s have shown exercise may improve Parkinson’s symptoms. More recent studies, focus on the concept of intense “forced” exercise suggest that certain kinds of exercise may be neuro-protective, i.e., actually slowing disease progression. So it is important your personal Parkinson’s care plan include both medical and non-medical components.
I am a great proponent of an intense exercise program, specifically Rock Steady Boxing, as an integral part of your care plan. When I retired from a career in equity research and investment banking in 2017, I weighed 212 pounds, wore a size 44 waist pants and a 46 or 48 suit or sport coat. After 3.5 years of being diagnosed with Parkinson’s and adopting the exercise routine outlined below, I weigh 174 pounds (38 pounds less), wear a 38 waist slim pants and a 44 suit or sport coat.
My personal Parkinson’s exercise program includes Rock Steady Boxing (4x per week online during the pandemic) now 2x per week in the gym and 2x per week online, 1x per week yoga class still online, walking 1 to 2 miles 2x to 3x per week and golf 2x per week – 18 to 27 holes. Rock Steady Boxing provides my most intense exercise, usually leaving me dripping with sweat and a bit sore after an hour. But, with the weather improving, I will shift my routine more toward golf and walking and do less Rock Steady Boxing on line. When the weather turns cold, I will rotate back to more Rock Steady sessions per week.
Building Your Team – I was fortunate when I started building a care team in that I had the advice of two old friends, one a clinical psychologist and and one a psychiatrist specializing in geriatric care who first diagnosed my Parkinson’s (see prior post), from my daughter-in-law who had recently completed her master’s degree in Speech Pathology, from a business associate who developed the disease at a young age, and from the wife and principal caregiver of another friend who was a long-term Parkinson’s patient, now confined to a wheel chair and whose speech is very difficult to understand.
To assemble my care team, I researched Parkinson’s and Parkinson’s care. But actual patients and caregiver’s were the most helpful. I was also fortunate to live in a major metropolitan area, Baltimore, with some of the best medical institutions in the world. So I had a choice of multiple motor disorder’s specialist physicians and numerous options for all types of Parkinson’s care and therapy.
Resources – Sources of information on Parkinson’s that we consulted include:
Parkinson’s Disease – A Complete Guide for Patients and Families, Third Edition, William J. Weiner, M.D., Lisa M. Shulman, M.D., Anthony E Lang, M.D., F.R.C.P., Johns Hopkins University Press, 2013). This is the best patient/layman’s guide to Parkinson’s I have found and Lisa Shulman now directs the motor disorders center at the University of Maryland Medical Center.
The Michael J. Fox Foundation for Parkinson’s Research https://www.michaeljfox.org
The American Parkinson Disease Association https://www.apdaparkinson.org
The Maryland Association for Parkinson Support, Inc. which fully funds Rock Steady Boxing and other programs for Parkinson’s patients
Motor Disorder’s Specialist – The first step in assembling a Parkinson Disease care team is to find a neurologist who specializes in motor disorders. This person can best diagnose if you have Parkinson’s or some other condition, get you started on a medication regimen that works for you and help you understand your illness and how it is likely to progress. The Parkinson’s patients and care givers we consulted, as well of my primary care doctor and a general neurologist, all recommended the same motor disorders specialist – Dr. Stephen Reich, MD at the University of Maryland Medical System. https://www.umms.org/find-a-doctor/profiles/dr-stephen-reich-md-1023125507
University of Maryland Medical Center is located in downtown Baltimore, with a number of affiliated hospitals throughout the state. It has a large ambulatory neurological center, with considerable expertise and active research underway on Parkinson’s. It took several months to get an appointment with Dr. Reich, which I believe is typical for well-regarded motor disease specialists. So I first saw a general neurologist for an initial assessment and a basic and relatively low dose set of Parkinson’s medication.
Other components of my Parkinson’s care team:
Physical therapist – I chose Patty Wessel, who is a physical therapist with Mind Body Physical Therapy & Wellness Center and a Parkinson’s specialist. Patty is LSVT certified and also runs Rock Steady Boxing Charm City, one of a number of Rock Steady Boxing programs in the Baltimore area designed specifically for Parkinson’s patients. Like Dr. Reich, Patty was recommended by multiple sources and has been great to work with.
LSVT (Lee Silverman Voice Treatment) Programs for individuals with PD have been developed and researched over the past 20 years beginning with a focus on the speech motor system (LSVT LOUD) and more recently have been extended to address limb motor systems (LSVT BIG). Both the LSVT LOUD exercises for voice and LSVT BIG exercises for movement have been clinically tested and are widely used for Parkinson’s patients. Therapists are specifically trained and certified to use the LSVT programs. https://www.lsvtglobal.com/Patients_Family
Rock Steady Boxing is the first gym in the country dedicated to the fight against Parkinson’s. In the Rock Steady Boxing program exercises are largely adapted from boxing drills. Boxers condition for optimal agility, speed, muscular endurance, accuracy, hand-eye coordination, footwork and overall strength to defend against and overcome opponents. At RSB, Parkinson’s disease is the opponent. Exercises vary in purpose and form but share one common trait: they are rigorous and intended to extend the perceived capabilities of the participant. https://www.rocksteadyboxing.org/about/
Speech therapist – I used the Outpatient Rehabilitation Institute at St. Joseph’s University of Maryland Medical Center for speech therapy. St, Joseph’s is close to my home, LSVT LOUD certified and one of my Boxing class members recommended them. The speech therapist I work work with is Angela Ferrara, MS, CCC/SLP, LEAD. After working for several months with a therapist, you go home with speech exercises design to spur Parkinson’s patents to speak loudly and clearly. The disease causes patients, without realizing it, to speak very quietly and slur their words, making them difficult to understand. To add some fun to the exercises, my therapist included Shel Silverstein poems. Ideally, a Parkinson’s patient will do these exercises once or twice day, every day. There is an Iphone app called Voice Analyst that allows you to measure your pitch and volume, just as a therapist would. I am seldom diligent enough to do my speech exercises every day, but quickly notice the difference in my speech if I don’t keep up my practice. I schedule periodic tune-ups with my therapist to check on my progress and due for one of these.
Psychiatrist or psychologist able to do neurological/psychological testing – This is not part of every Parkinson’s patient’s initial care team, but my friend Mitch Clionsky encouraged me to get a comprehensive baseline cognitive evaluation soon after my diagnosis, so my care team could better assess how my cognitive abilities change overtime. Mitch recommended Jason Brandt, Ph.D., ABPP(CN) Professor and Director at the Johns Hopkins Cortical Function Laboratory & Medical Psychology Clinic. I could have had this same type of testing done elsewhere but decided to follow Mitch’s suggestion. My motor disorders physician previously worked at Hopkins and was very comfortable with having Dr. Brandt do baseline testing.
I also continue to see my personal physician who monitors my overall health and have recently encountered some dental issues, which may be exacerbated by Parkinson’s – specifically grinding my teeth and clenching my draw. As Parkinson’s progresses, it can impact your cognitive abilities and sometimes prompt impulsive and compulsive behaviours, possibly as a result of Parkinson’s medications. While this has not been a significant issue for me so far, I would like to add a therapist to my care team to explore these issues if they arise.