Selecting A life Plan Community in Baltimore for A Parkinson’s Patient

On Thursday, November 9 at 7:00 pm, I presented a webcast for Baltimore’s Parkinson’s community on selecting a Life Plan community. While most Parkinson’s patients are cared for at home and through community-based programs sponsored by MAPS, some Parkinson’s patients will move to a senior housing community as their disease progresses, usually to relieve demands on a spouse or family caregiver.

The slide deck from the webcast is below. It contains reference material that may be helpful if you are considering moving a Parkinson’s patient to a senior housing community. I believe Life Plan communities, which are 300 to 500 units or mega-Life Plan communities with over 1,800 unitse, offer a full range of care options, and are starting to provide PD support groups and exercise programs specifically for PD are the best option for a Parkinson’s patient and healthy spouse for the reasons discussed below. There are also smaller rental only communities that offer Independent Living, Assisted Living and Memory Care, such we those by Baltimore-based Brightview and Springwell that may meet the needs of some Parkinson’s patients.

In the two prior posts, published earlier today, I provide supplemental material that explains senior housing and home care options and terminology and a separate slide deck with photos of some life care communities in MD to help you see the options available.

I would like to thank Judy Friedman at MAPS for the opportunity to provide information to Parkinson’s community and for the help they have provided me in management my illness. Please post questions and comments and I will try my best to respond.

Photos of Life Plan Communities in Baltimore

In my November 9, 2023 webcast for the Maryland Association for Parkinson’s Support (MAPS) I discuss Life Plan Communities (LPCs) as a housing option for Parkinson’s patients. LPCs were preciously called continuing care retirement communities (CCRCs). The industry changed the terminology used to describe these communities to emphasize the lifestyle they offer, rather than their ability to provide different levels of care over time as residents age.

There are 17 LPCs in the Baltimore metro area, with two additional communities under development or seeking pre-sales. We focused on Broadmead, Charlestown, Edenwald, Roland Park Place and Vantage Point in Columbia to understand pricing, contract options, etc. and to determine if the community offers PD care on site or in close proximity to the community. The photos below provide additional a feel for our focus communities.

LPCs offer a full range of senior housing options on a single campus. These communities are typically 300 to 500 units in size, offer very attractive common areas, programs and a wide variety of activities and programs. Two Baltimore area LPCs, developed by Erickson, have 1,850 units and I call them mega LPCs. LPCs typically charge an entrance fee and a month service fee. We believe these communities are well-designed to accommodate a PD patient and a healthy spouse because of the broad range of activities they offer, and a number of Baltimore LPCs now provide PD support groups and exercise programs on campus.

Building A Parkinson’s Care Team

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

The American Parkinson Disease Association

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.

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.

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.

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.

Out of the Closet on Parkinson’s

I was first diagnosed with Parkinson’s disease in October 2018. My family and close friends have long known of my condition. But I have been reluctant to discuss Parkinson’s on my blog. I was concerned that potential consulting clients and board recruiters might be less willing to use my services if they knew I had a condition that could limit my mobility and potentially impair my cognitive abilities.

Parkinson’s disease is a progressive nervous system disorder that affects movement. Symptoms start gradually, sometimes starting with a barely noticeable tremor in just one hand. Tremors are common, but the disorder also commonly causes stiffness or slowing of movement.

Mayo Clinic

As Parkinson’s disease progresses patients may experience impaired posture and balance, their speech may become slurred and it may impact their cognitive abilities. There is no cure for Parkinson’s. Medication can control symptoms but are not able to slow the progression of the disease. Exercise to improve flexibility, balance, strength and speech appear to slow disease progression.

In Parkinson’s disease, certain nerve cells (neurons) in the brain gradually break down or die. Many of the symptoms are due to a loss of neurons that produce a chemical messenger in your brain called dopamine. When dopamine levels decrease, it causes abnormal brain activity, leading to impaired movement and other symptoms of Parkinson’s disease.

Mayo Clinic

Parkinson’s disease is very difficult to diagnose because symptoms develop slowly and are different for different individuals. For example, I have been formally diagnosed for about three and a half years but have never developed a tremor in a limb, which is widely seen as a key characteristic of Parkinson’s. For more than two-years before my Parkinson’s was diagnosed I was assessed and treated for back pain by my primary care doctor, an excellent Hopkins’ trained physician, an orthopedic surgeon and a chiropractor for stiffness in my back. None of these professionals recognized that I had Parkinson’s, even though the orthopedist and chiropractor specialize in back and muscle treatment and my primary care doctor has observe me for more than 10 years.

My first Parkinson’s diagnosis came at my 50th high school reunion when a former classmate, Mitchell Clionsky, PhD and his wife Dr. Emily Clionsky immediately saw my posture and gate as telltale signs of Parkinson’s. Emily wanted to write me a script for carbidopa/ levodopa on the spot so I could better enjoy my highschool reunion weekend. But I elected to wait and see my personal physician when I returned home. He found the diagnosis credible, referred me to a general neurologist who confirmed the diagnosis, provided a basic initial drug regimen and referred me to a motor disease specialist.

In the three and a half years since my Parkinson’s diagnosis my motor disease specialist (Dr. Stephen Reich) has prescribed and adapted a medication regimen that keeps my symptoms well under control most of the time, using four different medications at present. I have used a physical therapist and a speech therapist, both with lots of experience with Parkinson’s patients, and I have joined the Rock Steady Boxing Program. Rock Steady is specifically designed for Parkinson’s patients and offered without charge in Maryland by the Maryland Alliance for Parkinson’s Support (MAPS). I also took a battery of cognitions tests shortly after my formal diagnosis, at Mitch’s recommendation, so my care givers and I would have a base line from wish to measure changes in cognition as my disease progresses.

During a typical week I do three or four hour-long boxing/intense cardio workouts, an hour of yoga, and walk 1 -2 miles or play 9 holes of golf one or two times per week, weather permitting. Since beginning my exercise regimen I have lost 0ver 30 pounds, dropped six inches from my waist and am much stronger and more fit than I have been in many years. The boxing program, in particular, and associated Parkinson’s targeted exercise has improved my posture and my balance and is important for keeping my Parkinson’s symptoms under control. We continued boxing on line during COVID and course are now split two days per week in the gym and two on line. We are in temporary gym space now but hope to have improve long term gym space later this year.

My symptoms are largely unchanged since I have been diagnosed. But, as anyone with Parkinson’s knows, can occasionally flare up between medication dosages or if you eat something (usually protein) that interferes with your medication being absorbed or experience some stress that may aggravate your symptoms. After living with your illness and working with your motor disease specialist, you can develop tools to manage these situations.

Next – Building A Parkinson’s Care Team