Author: Jerry Doctrow

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.

Corrected-PP-Hsg-Care-Options-for-Parkingsons-2Download

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.

LINK TO WEBINAR ON UNDERSTANDING SENIOR HOUSING & CARE OPTIONS – SELECTING A LIFE-PLAN COMMUNITY IN BALTIMORE

On January 9, 17 and 23, 2023, Beth Am synagogue sponsored a 3-session webinar on senior housing and care options and selecting a Life-Plan Community in Baltimore. I led the webinar and was assisted in its preparation and presentation by Becky Bees, Marketing Director of Roland Park Place (RPP), the only Life-Plan Community in the City of Baltimore.

RPP is located within walking distance of the Arts and Science (Homewood) campus of Johns Hopkins University, and about 2.5 miles from Beth Am synagogue. RPP has 10 -12 Beth Am members among its residents, and additional Jewish residents to are not members of our synagogue, but most of its residents are not Jewish. Because of its location near the Homewood Campus of Johns Hopkins, RPP attracts a lot of retired professors and physicians. Its residents are known as being intellectually curious with interests across a broad range of topics.

While Becky Bees and I both have ties to RPP, and used pricing and other details from RPP to explain Life-Plan Community pricing and entrance fee options. the webinar provides information to help seniors and their families make an informed choice about the type of senior housing and care that best meets their needs and information on all Life-Plan communities in the Baltimore metropolitan area. The 3rd session features Beth Am members living in four different Life-Plan Communities explaining their own selection process, their satisfaction with their chosen community and their advice to those considering such a move.

Click link below to access video recording and webinar slides

https://bethambaltimore.org/selecting-a-life-plan-community-in-baltimore-webinar-series/

We welcome your questions, comments and suggestions. If you are considering senior housing and care options for yourself or a member of your family, you may also find other posts on this blog of interest. A Life-Plan Community, previously referred to as Continuing Care Retirement Community (CCRC), charges a significant entrance fee, offers a broad range of care for its residents (independent living, assisted living, memory care and skilled nursing) and offers assurance that a senior, or a senior and her or his spouse, will get any type care the need as they age at a predictable cost.

Whether you are interested in a Life-Plan Community, another type of senior housing community, or care at home, we encourage you and your family to consider your options sooner than you believe is necessary, so you are not force by an unexpected health condition to make a decision about your care in a couple of days with very little time to assess your options.

Becky Bees and I appreciate the support we received from the clergy and staff at Beth Am to offer this webinar and make it available via the synagogues web site.

LAI MEETING – APRIL 19, 2023 CHALLENGES AND DEVELOPMENT OPPORTUNITIES FOR MD CONDOS USING HIGHFIELD HOUSE AS CASE STUDY

On June 24, 2021 the 12-story, 136 unit, Champlain Towers South condominium in the Miami, FL suburb of Surfside collapsed. The collapse took only 12 seconds, killed nearly 100 people, and was among the worst structural failures in US history.

Factors being investigated as causes for the collapse: long-term degradation of reinforced concrete structural support in the basement-level parking garage under the pool deck, due to water penetration and corrosion of the reinforcing steel. The problems had been reported in 2018 and noted as “much worse” in April 2021. A $15 million program of remedial works had been approved before the collapse, but the main structural work had not started. Other possible factors include land subsidence, insufficient reinforcing steel, and corruption during construction.

Highfield House Condominiums is one of only two buildings in Baltimore designed by the world renowned modern architect Ludwig Mies van der Rohe. The building was completed in 1964 and is listed on the National Register of Historic Places. It opened as a rental apartment project and was converted to condominiums in 1979.

In 2020, Highfield House owners approve a special assessment of nearly $4.3 million to repair and restore the large plaza that also serves as the roof of the building’s parking garage. The critical items addressed in Highfield House’s plaza repair and restoration project are the same as those identified as postential causes of the Champlain Tower collapse – water leaking into the parking garage leading to deterioration of concrete and steel support for the building. Plaza repair and restoration work at Highfield House was substantially completed in 2020. We believe Highfield Houses’ ability to obtain approval for, finance and complete major structural repairs provides an important case study for other condominium owners, particularly following the Champlain Towers South collapse.

At the LAI Balitimore Chapter meeting on Wednesday April 19, 2023 Highfield House owners and officers who worked for six year to obtain approval for and complete the plaza repair and restoration project will review:

  • The effort and challenges to obtain 2/3rd approval for a $4 million + condo special assessment -Stephen Cleghorn – past president HH Condominium
  • The scope of work and the surprises and challenges encountered – Tom Liebel, – Moseley Architects, led the design team for the HH plaza repair and restoration project.
  • Challenges facing Maryland condominiums as a result of significant changes made in the 2022 session of the General Assembly – David Fishman – Highfield House board member and real estate attorney.
  • Condominium development and redevelopment opportunities expected to appear in 2024 – Jerry Doctrow – former HH board member, and board president who oversaw financing for the plaza repair and restoration project.

An article from Common Ground magazine is attached below for LAI members to review in advance of our meeting followed by a the changes to MD condo law approved in 2022 and links to a few press articles on Champlain Towers South and the impact of changes in FL condo regulations. We encourage LAI members attending on April 19 read the item below before the meeting.

Modernizing Mid-Century – CG March April 2022 – publishedDownload

MD condo law reserve changes with Doctrow comments CH_664_hb0107eDownload
Florida Condo Owners Brace for New Inspection, Reserve Requirements – WSJDownload
Developers Rush to Buy Out Owners in Aging Miami Buildings After Area Condo Collapse – WSJ

Finding Happiness In A Senior Housing Community

This post updates one I originally published in 2015 that uses data from a study of nearly 6,900 seniors mostly living in independent living community or an IL unit within a larger, multi-level Life Plan Community. While the study was designed to guide senior housing developers and operators, I use the study results to guide seniors and the families on factors to evaluate and ease the transfer of a senior to community.

What’s Most Important For Happiness?

How frequently and how strongly a senior housing resident feels at home accounted for nearly half of the overall satisfaction of senior housing residents in a 2012 ASHA study.   The 2014 study explored what caused independent living residents to “Feel at Home”.   ASHA’s “Feel at Home” study was based on a survey of 6,858 predominantly rental independent living residents in 11 metropolitan areas who completed a 55 question survey.  

ProMatura Group, a well-respected survey research firm based in Oxford, MS that specializes in senior housing and care research, conducted the survey, evaluated the survey results and authored the ASHA study.  I want to thank Margaret Wylde Ph.D., CEO of ProMatura Group and her staff since for this blog I have borrowed liberally from the ASHA study, which was the product of their work.​

ASHA Feel At Home Graph

Key factors contributing to “Feel at Home” identified in the 2014 ASHA study include satisfaction with private residence (32%), camaraderie with others (31%), sense of control (14%) and staff know them well (5%).  Other items contributing less that 5% of “Feel at Home” included:

  • Number of friends in the community
  • Decorated residence the way they like
  • Know the things they need to know about the community
  • Quality of daily activities and programs
  • Dining program
  • Dining schedules
  • Frequency of seeing friends outside the community
  • Transportation provided by the community

What To Look For When You Visit?

ASHA’s “Feel at Home” study and this blog focus on satisfaction of independent living residents.   Someone moving to independent living is about 85 years old, is moving from their a private residence they have occupied for an average of 19 years, usually a single family home, and is healthy enough to live with minimum outside help with the activities of daily living.   The prospective resident is typically active in making the decision about whether and where to move.

Private Residence – Most senior housing communities are designed to wow you with their façade, grounds and the common areas you see just inside the front door, what marketers call “curb appeal”. While the ASHA study indicates the quality of common areas contributes to resident satisfaction, the study indicates attributes of the private residence are more important to residents feeling at home and being very satisfied.   Key factors in making a private residence satisfying include:

  • Unit size – Just like with Goldilocks, the most satisfying independent living residence was not too big or too small, with 841 sq. ft. on average being “just the right size”.
  • Decor and Storage Space – Being surrounded by familiar things, having a décor that you liked and the ability to store possessions where you can access them were important for overall satisfaction with one’s private residence.
  • Natural Light – In the ASHA surveys more than half of the “I’m Home” customers strongly agreed with the amount of natural light in their residence, so looking for multiple windows that allow for plenty of natural light is a feature prospective residents and their families should consider.
  • View from the Windows in Private Residence – Along with natural light, “I’m Home” customers were likely to have a nice view from the windows in their private residence.   More than half (54%) of “I’m Home” customers strongly agreed they enjoy the view from the windows of their residence.   A view doesn’t have to include beaches, mountains, parks or rivers; a nice view can be as simple as a tree, a small garden area, a fountain, or a bird feeder.

Camaraderie With Others – Camaraderie with others was nearly tied with “satisfaction with private residence” as the most important factor making senior housing residents feel at home and very satisfied.  Other factors, such as having close friends and the number of friends also contributed to residents’ satisfaction.   Gauging how well you or a loved one will fit in at a senior living residence can be difficult to do during a visit. Things you can ask about or do during a visit for how welcoming a community will be include:

  • Warmth of Greetings – Make it a point to notice if you are greeted warmly by staff and other residents.
  • Cliques – Ask staff specifically about the presence of cliques in the building and the specific measures staff takes to address cliques and the off-putting behavior that may be associated with them.
  • Steps To Help New Residents Fit In – A senior housing community cannot impose friendships on new or existing customers, but staff can and should facilitate that eventuality. According to the ASHA study, staff from the very beginning of association with a new customer need to learn who they are, what they like, identify and help them form links with other customers. Items noted in the ASHA study that might help include staff sponsoring house warming coffees for a small group of residents in a new resident’s unit after they settle in and having a mentor from among the existing residents help acclimate newcomers.  You should ask what specific steps each community takes to help new residents fit in.
  • Cultural Fit – Try to assess how you or your love one’s economic and social background compares with that of other residents and how the future resident’s age and physical and mental capacity match up. New residents that are on the slightly younger side, more mentally alert and better dressed may find it easier to fit in according to the New York Times article.
  • Interests – What are your interests and are there any others at the facility that have similar interests or some other connection that might make it easier for you to make one or two friends.
  • Try It Out – You should definitely try the dining and do it in the residents’ dining room not in a private dining room while meeting with the marketing staff.   This will give you an ideal of the quality of the food and how it is served as well as how receptive existing residents are to newcomers. Many senior housing communities also allow for short-term respite stays or give prospects a chance to try out the community.   This may offer a better way to assess your compatibility with a community than a visit or two of a hour or so.   You may also want to visit in the evening to see what staffing and the activity level is like after prime viewing hours.

Sense of Control – Sense of control was about half as important to resident satisfaction and feeling at home than a resident’s unit and camaraderie with other residents but did matter. Factors affecting a sense of control included:

  • Information – Knowing where things are, how things work and what is going on can be important for residents to feel in control.   The orientation and communication process between the building and its staff with residents is worth asking about. Sales counselors should explore the social preferences of prospects and ensure they understand the communal nature of the community. They should discuss group activities, dining, and the many interactions with others that occur during a typical day.
  • Scheduling Flexibility – New residents moving from a private home where they may have few visitors to a senior housing community with scheduled meals and activities and its own daily routine can experience a loss of control   Flexibility on meal times, when to get up and go to bed and options for transportation and activities can contribute to a resident maintaining a sense of control.
  • Options – Not Requirements – Residents should be encouraged to be out of their residences and participating in activities but should feel that have the option to pass on activities that aren’t of interest.

Staff Knowing Residents – How well the staff knows a resident accounted for about 5% of residents feeling at home and being very satisfied.   You should get a sense of staff interaction with residents during a visit and should explicitly ask existing residents if they believe the staff know them well.

Strategies For A Successful Transition and Finding Happiness

To ease the transition and find happiness in a move to a senior housing community, the studies suggest the following:

  • Recognize The Move Will Be Stressful – It is important for a senior moving into a community and their family to recognize that such a move is a major transition and will be challenging and somewhat stressful under the best of circumstances.
  • It Will Take Time To Adjust – Very satisfied residents who “Feel at Home” have an average tenure of four years, versus three years for those that sometimes feel at home and two years for those who don’t feel at home. So the longer a resident lives in a senior housing community, the more likely they are to “Feel at Home”.   Give yourself some time to adjust and stop missing your former home.
  • Identify Some Positives – Despite the magnitude of the change, there are usually real advantages for a senior previously living on their own.   These include: greater social interaction, better nutrition, more physical activity and potential greater freedom of action if you take advantage of community provided transportation and support services.
  • Incorporate Familiar Items – A resident’s own furniture and other familiar and personal items can help make the new residence “Feel At Home”.
  • Visit Often – The quality of visits by family members is important to overall satisfaction and can help ease the transition and the feelings some new residents may have of being isolated in their new surroundings.
  • Get Out and About – Opportunities to visit places and friends outside the community is also an important factor differentiating very satisfied residents.   Excursions with family members or friends, using transportation offered by the community, or Uber or taxi may all be beneficial in easing a transition to a new senior housing community.

Convert Colleges to Senior Hsg. Enrollment Declines Create New Opportunities

I have written three times before on this blog about augmenting college finances and declining enrollment by introducing senior housing on campus or by fully converting small college campuses into senior housing communities. The first time was February 2, 2019, in response to an opinion piece in the Wall Street Journal about the challenges facing small, private colleges. The author said many of these institutions will need to close or radically change their operations to survive.

I republished my second blog post, with some updated commentary, in September 2019 after Welltower (WELL), the largest publicly traded Healthcare REIT, announced it acquired for$34 million Newbury College’s 7.8-acre campus in the Boston suburb of Brookline to convert the campus into a seniors housing community. Newbury had an enrollment of 600 mostly disadvantaged students, to which it was providing substantial financial aid, and was reportedly operated at a loss for several years before closing. The campus included 142,000 sq. ft of built space. The sales price was sufficient to repay all of the college’s debt, provide severance for staff and provide funds to assist some disadvantaged students obtain a college education elsewhere according to press reports.

Newbury College Campus, Brookline, MA

On April 30, 2020, The Wall Street Journal published an article entitled “Coronavirus Pushes Colleges to the Breaking Point, Forcing ‘Hard Choices’ about Education.” The Journal article leads with the announced closing of MacMurray College in central Illinois after 174 years. The article goes on to indicate 50% of college enrollment managers are very worried about meeting fall targets for enrollment and tuition, which prompted my third blog post.

Before the pandemic, Robert Zemsky, a professor at the University of Pennsylvania graduate school of education in his book The College Stress Test indicated that 100 of the nation’s 1,000 private, liberal arts colleges were likely to close over the next five years. He now says 200 of these colleges could close in the next year, according to the Journal. Cancellation of on-campus classes during the pandemic, growing impediments to overseas students wishing to study in the U.S., and the increased appeal of lower cost, closer to home college alternatives all contribute to the growing financial distress of small, private American colleges.

Another news item last week prompted me to again revise, update and publish a new blog post on converting small colleges to senior housing conversion. On September 12, 2022, The Trustees of the College of Notre Dame of Maryland announced this Catholic women’s college, founded in 1895 with an undergraduate enrollment of about 660, would go Coed. The college already has about 1,750 coed graduate students, most part-time evening or weekends. I am friends with a number of Notre Dame of Maryland graduates, some dating back to my undergraduate days at Johns Hopkins. I live less than a mile from campus and my wife was an adjunct professor of management at the College in the 1980s. It has many great attributes. But it is hard for me to see how going coed will meaningfully improve its competitive or financial position.

The Notre Dame of Maryland is located on a hilly, wooded 60-acre campus in a very attractive wealthy residential part of Baltimore. The campus adjoins and connects with the campus of the coed Loyola College of Maryland, with which it shares a library. Loyola University Maryland is a Jesuit, Catholic University with nearly 4,000 undergraduate and 1,300 graduate students. Land constrained Loyola has long been interested in acquiring the smaller woman’s college to accommodate future growth, something which Notre Dame has long resisted.

College of Notre Dame of Maryland

The seniors housing and care industry has faced its own admissions and operating challenges during the pandemic, including lower occupancy, some overbuilding, restricted admissions to due Coronavirus self-isolation and high levels of COVID infections and deaths at some skilled nursing facilities. But the number of seniors 75+, when many begin seriously considering seniors housing and care options, is expected to grow about 40% between 2020 and 2030, while no growth is expected during that time in the undergraduate U.S. college population, age 18 -24. The lack of growth in the undergraduate age population in U.S., increasing administrative burdens and geopolitical tension, and the high costs of a four-year college education are continuing to reduce college enrollment, particularly for small, private colleges.

Strong population growth in the 75+ senior population, together with the fact that many seniors are looking for more dynamic living environments that include life-long learning, make us optimistic about redeveloping exiting college campuses in whole or in part to seniors housing. At a college like Notre Dame of Maryland, the College could joint venture with a for profit or nonprofit senior housing developer to add a senior housing community on campus, generate some immediate cash, leverage its existing dining and maintenance staff, providing on-campus work-study experience for students in nursing and allied health programs and providing opportunities for the College of Notre Dame of Maryland to expand it’s curriculum to include seniors housing management.

Notre Dame of Maryland should also consider selling its entire campus and fully converting it to a senior housing community because it is one of the few uses (other than an educational institution) that its neighbors and City officials are likely to support on the site. Conventional, higher density housing or commercial development is likely to be opposed by owners of large single- family homes nearby because of increased traffic and congestion. A seniors housing community will generate little if any additional traffic and should generate a substantial number of jobs for city residents. It might be able to accommodate retired nuns at a preferential rate, as well as provide an endowment that could continue the mission of educating woman. If I were the university’s real estate advisor, I would see seniors housing as one of the few real competitors to Loyola to purchase the site.

Earlier in my career, before I began to focus on seniors housing and care and health care real estate as a stock analyst and investment banker, I spent more than five years as a real estate market and feasibility consultant doing a lot of work for colleges and universities including: University of Maryland at its flagship College Park campus, its Baltimore professional schools and UMBC in Baltimore County. Other clients included Johns Hopkins Health System, Penn State Hershey Medical Center and Arizona State University.

Please contact me at jdoc@robustretirement.com with comments and questions.

Are Baby Boomers Now Ready for Seniors Housing?

I am 72. I graduated college 50 years ago and am a quintessential baby boomer. I studied seniors housing and care as a real estate market and stock analyst for more than 20 years. I spent several years raising capital and advising companies in the seniors housing and care space and served on the board of Quality Care Properties, a health care REIT.

The holy grail of seniors housing and care throughout the last 20 to 25 years has been the arrival of baby boomers as senior housing residents. Despite a series of ups and downs driven by overbuilding, varying economic conditions, and a pandemic, the arrival of the baby boomers at the front door of seniors housing properties nationwide continues to be seen as spurring huge investment upside for the seniors housing and care industry.

The problem with this thinking is boomers have not moved in mass to seniors housing in their 60s or so far in their 70s. There is a rethink going on among some in seniors housing considering if boomers may abandon traditional seniors housing offerings altogether and, instead, seek out active adult communities, both large ones like the Villages and Del Webb and smaller scale active adult options. In these scenarios, boomers use home health care to avoid traditional independent, assisted living, memory care and CCRC properties altogether.

A funny thing happened this past week. Two baby boomer couples we have known for many years, who are our age or just a few years older, independently started touring CCRC communities around Baltimore, where I live. These same boomers, until very recently, could not picture themselves ever living in a CCRC. It is too soon to call this a trend, much less a wave of baby boomer demand, but it appears to me that after three years of pandemic, on and off masking, and much reduced social interaction more boomers are ready to consider communities that offer a wide range of education, entertainment and social activities, even if these properties are full of “old people”. Another couple we know is selling their condo near the water in a hip Baltimore neighborhood to rent in a 55 plus community in the suburbs with pickleball courts, educational and social programs.

I am curious if other senior housing industry professionals and other baby boomers are seeing evidence that boomer attitudes toward at least CCRCs are beginning to change and the holy grail of increased boomer demand for seniors housing may yet remake the industry. Please respond with your comments on this post.

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 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

https://www.google.com/search?gs_ssp=eJwNx0ESQCAUANCxNeMObWxs_E9SjuAWX2EaVFOZ4fa83Surdm8R9Zi7k8sLiqmGRyotERc-rIQcDE7wiM0o4KIbaBWj6XFuLorvSc4wSslrS9l6xzYfWaB4WJf-pTsEH_MHcoAfXg&q=maryland+association+for+parkinson+support&rlz=1C5CHFA_enUS820US820&oq=maryland+assocation+for+par&aqs=chrome.1.69i57j46i13i175i199j0i390l3.9399j1j7&sourceid=chrome&ie=UTF-8https://www.apdaparkinson.org/resources-support/living-with-parkinsons-disease/?gclid=Cj0KCQjwn8_mBRCLARIsAKxi0GIyyoaSICbiiZtFzsB33dJzK-O01qslQ7-56ym6xi314UFMP-t4Ll8aArfNEALw_wcB

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.

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. http://www.cns-neuro.com/DrClionsky.html. 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