Living An Active Life with Parkinson's Disease
Transcript of Living An Active Life with Parkinson's Disease
Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Third AnnualThird AnnualThird Annual
Onondaga County ConferenceOnondaga County ConferenceOnondaga County Conference
Living An Active Life with Living An Active Life with Living An Active Life with
Parkinson's DiseaseParkinson's DiseaseParkinson's Disease
Thursday, October 8, 2015Thursday, October 8, 2015Thursday, October 8, 2015
American Legion Post 787
5575 Legionnaire Drive (off Route 31)
Cicero, New York 13039
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Marlene Reinmann Conference Chair
PROGRAMPROGRAMPROGRAM
8:15 to 8:45 Check In & Community Resource Preview
9:00 to 9:10 Welcome Susan M. Kennedy, Host WCNY-TV PBS “Cycle of Life”
Lisa D. Alford, Commissioner, Onondaga County Department of Adult & Long Term Care Services
Cynthia Cary Woods, Program Coordinator for Upstate University’s HealthLink
9:10 to 9:45 Come Dance With Me
Movement for Healthy Aging
Tumay Tunur, PhD
9:45 to 10:30 Managing the Emotional Challenges of Chronic Illness
Isabel Kliss, DNP
10:30 to 11:00 Community Resources Education
11:00 to 11:45 Improving and Maintaining Strength & Balance
Susan Jarmel, PT
11:45 to 12:30 Lunch & Community Resources Education
12:30 to 2:15 Treatment Advances
Dragos Mihaila, MD
Innovative Devices & Equipment
Anthony Joseph, MPA
New Medications
Kelly Braham, PharmD
Financial & Legal Issues
Tim Crisafulli, Esq.
2:15 to 2:30 Questions & Answers
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Host Host Host --- Susan M. KennedySusan M. KennedySusan M. Kennedy
Susan M. Kennedy is the Host and award winning producer of the WCNY-TV PBS
program, “Cycle of Health.” She is responsible for researching topics, scheduling
interviews, assisting in field reporting and anchoring programs featuring stories of
compassion and hope from people seeking to improve their health. She has been with the
program since 2013.
From 2008 through 2010, Ms. Kennedy was the founding producer and on-air host for
the “Tempo Public Square” series on WLVT-TV PBS in Bethlehem, PA. She was
responsible for researching current events, scheduling on-set interviews, guiding field
reporting and anchoring smart and lively programs devoted to a single public policy
subject. Susan was the host of 32 weekly shows on topics including social security,
health care, state budget challenges, consumer spending, teen troubles and social media.
Ms. Kennedy worked previously as an anchor, producer, reporter, news writer and media
strategist for WPBN-WTOM-TV NBC in Traverse City, MI, WWTV-WWUP-TV CBS
in Cadillac, MI, WQAD-TV CBS in Moline, IL and WMAQ-TV NBC in Chicago, IL.
Susan received her Bachelor of Journalism from the University of Missouri, Columbia,
School of Journalism.
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Speakers of the DaySpeakers of the DaySpeakers of the Day
Kelly Braham, PharmD is a geriatric emergency medicine (GEM) and transitional
care unit (TCU) pharmacist at Upstate's Community Campus. She received her
doctorate of pharmacy degree from Albany College of Pharmacy and Health Sciences
in 2012. Kelly completed her PGY-1 residency at the Syracuse VA Medical Center and
joined the Upstate team when the Geriatric Emergency Medicine Department opened
in July of 2013. Kelly is currently pursuing her board certification in geriatric
pharmacy and is a member of the American Society of Consultant Pharmacists and the
New York State Council of Health-Systems Pharmacists. As a pharmacist devoted to
geriatric care, her focus is centered on addressing the pharmaco-therapeutic
management of elderly patients, with an emphasis on ensuring the appropriateness of
each drug therapy regimen and patient education for optimal patient outcomes.
Timothy P. Crisafulli, Esq. practices in the areas of elder law, trusts and estates, and
tax law. Mr. Crisafulli’s elder law practice is dedicated to assisting clients with long-term
care planning. He also represents clients in Medicaid fair hearings and in guardianship
proceedings. Through his trusts and estates practice, Mr. Crisafulli helps families protect,
preserve, and effectively transfer wealth. He utilizes his extensive knowledge of tax law to
minimize capital gains, income, gift and estate taxes. He administers estates through all
stages of probate, representing both fiduciaries and beneficiaries in
litigation.
His tax practice focuses on assisting businesses, not-for-profit organizations, and
individuals with tax planning, compliance, audits, and disputes. Mr. Crisafulli holds an
LL.M. in Taxation from the New York University School of Law; a J.D., magna cum laude,
from the Syracuse University College of Law; a Master’s degree from the Maxwell
School of Citizenship and Public Affairs at Syracuse University; and a B.A., summa cum
laude, from Le Moyne College. Prior to becoming an attorney, Mr. Crisafulli was a middle
school and high school social studies teacher in the Fayetteville-Manlius Central School
District, where he is now a member of its Board of Education.
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Susan Jarmel has been a physical therapist for over 35 years. She attended Syracuse
University where she received her BS. She completed her Certification in Physical
Therapy at New York University. In her early years as a physical therapist, Susan worked
extensively in neuro-rehabilitation where she developed her love for working with these
patients. She worked in many cities in the USA including NYC, LA, Philadelphia and
Syracuse. She was the Director of Rehabilitation Therapies for several years at Menorah
Park. She also has a great love for working with the elderly population. Susan studied
the Myofascial Release Technique and utilizes this very effective treatment as well. She
also has been a student of Yoga, and is certified as a Pilates instructor. She has a strong
commitment to her own physical wellbeing as well as to her patients. After many years
working in many settings, Susan opened Jarmel Physical Therapy, a private PT clinic, in
December 2012.
Her goal has been to offer the best quality care for those with neurological conditions as
well as those with other physical difficulties who often do not have the option, knowledge
or opportunity to receive the specialized care they need and deserve. This includes the
specialized area of Amputee Rehabilitation. She says that those with diseases such as
PD and MS can definitely benefit as well as improve their physical function, thus their
quality of life which is so important. Jarmel Physical Therapy is centrally located in the
Hill Medical Center, 1000 East Genesee Street, close to 3 major Syracuse hospitals and
Syracuse University.
Speakers of the DaySpeakers of the DaySpeakers of the Day
Isabel Kliss is a board certified Adult Nurse Practitioner specializing in geriatrics.
She graduated in May, 2011 with the MSN in Adult Health from SUNY Stony Brook. In
May, 2015 she graduated from Loyola University New Orleans with the Doctorate in
Nursing Practice; her capstone was about informal caregivers of dementia patients.
From September 2011 to May 2013 she worked at Arnot Ogden Medical Center as a
hospitalist. From May 2013 to July 2015 Isabel worked at University Geriatricians.
Currently, Isabel works for Optum managing complex geriatric issues in nursing homes.
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Anthony E. Joseph, is the Vice President of Long Term Care Services. The VP LTC
provides leadership and direction for all aspects of long term care and ensures the
attainment of the highest quality of resident care for Samaritan Keep Home (SKH) and
Samaritan Summit Village (SSV). The VP of Long Term Care serves as Administrator for
Samaritan Keep Home and is responsible for providing leadership, staff development,
budgeting, and management of key services. Mr. Joseph formally served as
Administrator of Presbyterian Home for Central New York from 1999 to 2012.
Mr. Joseph’s accomplishments include opening the first residence for those with
Parkinson’s disease in a skilled nursing facility and the first Telemedicine Program for
those with Parkinson’s disease in the country. This was done in collaboration with the
University of Rochester and Johns Hopkins University’s Neurology Departments. He
also has started the first Telemedicine Program in a nursing facility for those with
Diabetes in collaboration with the Joslin Center for Diabetes. Mr. Joseph received the
James W. Sanderson Memorial Award for Leadership from LeadingAge NY.
Mr. Joseph served on the Advisory Council for the Oneida County Office for the
Aging and formally the President of the Board of Advisory Directors for the Elder
Wellness Council of Oneida County. Mr. Joseph served on the New York Association of
Homes & Services for the Aging’s Center for Aging Services Technologies (CAST)
Committee. He previously served on the Board of Directors of the New York State
Association of Area Agencies on Aging.
Mr. Joseph is currently an adjunct professor at SUNY Oswego and Utica College. He
prepares students for the Nursing Home Licensure Examination administered by the
National Association of the Boards of Examiners of Long-Term Care Administrators. He
served as an adjunct professor at SUNY Institute of Technology at Utica-Rome from
1989-2013. A graduate of Utica College, receiving Masters’ Degrees from Syracuse
University (Maxwell School), in both Public Administration and Social Work, Mr. Joseph
has been a licensed Nursing Home Administrator for over 30 years.
Speakers of the DaySpeakers of the DaySpeakers of the Day
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Speakers of the DaySpeakers of the DaySpeakers of the Day
Tumay Tunur, Ph.D. has a fascinating record as a researcher, dancer and instructor.
Tunur has published several articles and has numerous manuscripts in preparation. As a
researcher, her experience started in 2003 as an undergraduate research assistant in
Turkey. Tunur was awarded a postdoctoral teaching position in the Department of
Exercise Science following her Ph.D. in Cell and Molecular Biology at Tulane
University, LA, and her postdoctoral research fellowships at University of Illinois
(Psychology Department) and at Syracuse University (Biology Department). Tunur has
taught numerous courses in biology, neuroscience and kinesiology and is also an
accomplished dancer, using her skills to teach the young, the elderly and people with
Parkinson’s disease. Tunur won numerous dance competitions, and traveled the world
with her dance company to teach and to perform. Tunur loves channeling her passion for
dance to education and outreach.
Most recently, Tunur taught a course at Syracuse University titled "Dance, Exercise, and
Brain Function," which brought the disciplines of dance and neuroscience together. She
also attended Mark Morris Dance Group's (MMDG) Teacher Training workshop for
Dance for PD and brought one of the founding instructors of Dance for PD, Misty Owens
to Syracuse for a workshop series in April 2014. Since then Tunur has been teaching
dance classes for people with Parkinson's, their friends and families. She directs
“Parkinson's Dance - Moving Through Possibilities” a free dance class that meets
every Thursday afternoon at 1:45 pm at the Dance Theater of Syracuse.
Dragos L Mihaila, MD directs the Parkinson's Disease and Movement Disorders
Program at University Hospital. He consults on patients with a variety of movement
disorders: Parkinsonism, dystonia, chorea, tics, myoclonus, gait disorders and restless legs
syndrome. Dr. Mihaila evaluates possible candidates for surgical treatment of movement
disorders and manages the stimulators in patients that have Deep Brain Stimulation.
Fellowship: Henry Ford Hospital, 2002, Movement Disorders. Residency: University of
Pennsylvania Health System, 2000, Neurology MD: Institutul De Medicina Si Farmacie,
Bucuresti, Romania, 1990.
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Madison County
Parkinson’s/MSA Support Group of Madison County
Fourth Tuesday of each month from 12:30 - 3:00 p.m.
Jim Marshall Farms Foundation, Inc.,
1978 New Boston Road, Chittenango, NY
For information contact: 315-655-3796 or 315-687-9014
Jefferson County
Chaumont Group
Every Tuesday at 11:00 a.m.
All Saints Church, Chaumont, NY
Exercise, pot luck lunch, speaker or activity, art class
Thursdays - T’ai Chi in Watertown
For information contact: Richard Guga at 315-771-6606
Sister Ann Hogan at 315-649-2717
North Country Coalition for Parkinson Disease and Movement Disorders
“Success Is Touching One Person’s Life Today - Improving It For Tomorrow”
Fourth Tuesday each month at 6:00 p.m.
Samaritan Summit Village, 22691 Campus Drive, Watertown, NY
For information contact:
Norman Hunneyman at 315-646-3446
North Country Coalition for Parkinson Disease
and Movement Disorders
PO Box 572, Sackets Harbor, NY 13685
www.northcountryparkinson.org
Parkinson’s Support and Education GroupsParkinson’s Support and Education GroupsParkinson’s Support and Education Groups
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Oneida County
Central New York Parkinson Support Group, Inc.
Third Tuesday of each month at 12:30 p.m. - meet and greet
1 - 3:00 p.m. - program/speaker
Presbyterian Home
4290 Middlesettlement Road, New Hartford, NY 13413
For information contact: Presbyterian Home at 315-797-7500
Monroe County
National Parkinson Foundation Greater Rochester
PO Box 23204, Rochester, NY 14692
For information contact: 585-234-5455, 800-327-4545
800-437-4636 Helpline
www.npfgreaterrochester.org
National Parkinson’s Disease FoundationsNational Parkinson’s Disease FoundationsNational Parkinson’s Disease Foundations
Davis Phinney Foundation
www.davisphinneyfoundation.org
866-358-0285
Michael J. Fox Foundation for
Parkinson Research
www.michaelfox.org
800-708-7644
National Parkinson Foundation
www.parkinson.org 800-327-4545
Parkinson’s Support and Education GroupsParkinson’s Support and Education GroupsParkinson’s Support and Education Groups
Onondaga County - See inside back cover.
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
A Gracious Thank You to Our A Gracious Thank You to Our A Gracious Thank You to Our
2015 Conference Community Supporters2015 Conference Community Supporters2015 Conference Community Supporters
At Home Independent Living
Non-Medical Companion, Homemaking
Service & Escorted Transportation to
Medical Appointments.
315-579-4663 Ext. 103
Joe Sullivan
Brookdale Managed Senior Living
Communities
Brookdale Summerfield
Independent Living
(315) 492-404
Lauren Mastriano
Brookdale Manlius
Enhanced Assisted Living
(315) 682-9261
Cherry Stonecipher
Brookdale Fayetteville
Memory Care
(315) 637-2000
Deena Dombroske
The Centers at St. Camillus
Home & Community based care
including home care, social & medical
model day programs. Inpatient or
Outpatient Rehabilitation and Skilled
Nursing Community.
315-703-0731
Joanna Jewitt
The Cottages at Garden Grove
Skilled Nursing and Short-Term
Rehabilitation Community. 12 Residences
providing a home for 13 elders each.
315-699-1619
Michelle Townsend
Brewerton Pharmacy
Prescription services, specialized
compounding and a complete line of
home medical equipment
Brewerton Pharmacy
315-676-4441
Village Pharmacy Central Square
315-668-2659
Village Pharmacy North Syracuse
315-458-0500
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
A Gracious Thank You to Our A Gracious Thank You to Our A Gracious Thank You to Our
2015 Conference Community Supporters2015 Conference Community Supporters2015 Conference Community Supporters
Inspire Care of CNY
Home Physical Therapy and Care
Management Company inspiring your
independence and helping you
maintain your quality of life.
315-447-3164
Becky Auyer
Loretto
Home & Community based programs
including the PACE Program and
medical day programs. Independent
& Assisted Living and Skilled
Nursing Communities located in
Syracuse and Auburn.
315-251-2662 ext. 3100
Katy Nappi
OASIS Upstate Medical University
CDSMP Program
Chronic Disease Self Management Program
The purpose of the Chronic Disease
Self-Management Program Workshop is
to enhance one’s skills and ability to manage
his or health and maintain an active and
fulfilling lifestyle. Participants are invited to
bring a family member, friend and/or caretaker.
The program is FREE and available for anyone
living in Onondaga County.
315-464-1746
Sally Terek
Senior Home Care Solutions &
Alzheimer’s Solutions
Specializing in Non-Medical home care
for seniors.
315-247-6741
Sheila Ohstrom
Franciscan Companies
Home & Community based care
including Lifeline, licensed home care,
medication dispensers and durable
medical equipment.
315-458-3600
Stacey Gingrich
Hearth Managed Senior Living
Communities
The Hearth on James
Independent & Enriched Living
315-422-2173
Alescia Porceng
The Hearth at Greenpoint
Independent & Enriched Living
315-453-7911
Nate Nosel & Lisa Jackson
Keepsake Village at Greenpoint
Memory Care
315-451-4567
Lisa Merrill
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Come Dance With MeCome Dance With MeCome Dance With Me
Movement
For
Healthy Aging
Tumay Tunur
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
T U M A Y T U N U R , P H D .
Why Dance for Parkinson’s Disease ??
Information and media by Dance for PD® by Mark Morris Dance Company
Movement disorder of middle & old age. Progressive disease It is about 2.5 times more prevalent in males
than females Symptoms:
Resting tremor (reduces during movement) Muscular rigidity Difficulty initiating movement Mask-like face Pain & depression Posture and balance problems Cognitive deficits
irritable, short-tempered, low sexual desire, unmotivated..
In most cases, no family history of the disease
PARKINSON’S DISEASE (PD)
Muhammad
Ali, pro boxer
Michael J. Fox,
Actor and PD
spokesperson
and founder of
MJFF
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Causes of PD
Signals that control body movements travel along neurons that project from the substantia nigra to the striatum.
These neurons release dopamine at their targets in the striatum.
Dopaminergic pathway is involved in motor control, reward, mood and memory. Under-activity Decrease in striatal-cortical
activation Over-activity schizophrenia-like symptoms
In Parkinson's patients, dopamine neurons in the nigro-striatal pathway degenerate.
Rare genetic form of the disease have been linked to gene mutations that disrupt the function of mitochondria, energy factories of cells.
http://www.methodisthealth.org/static/methodist/sites/adam/Seniors%20Center/10/000002.shtml
http://stemcells.nih.gov/info/scireport/chapter8.asp
Common Symptoms of PD
Postural instability and balance problems
Slowness of movement - bradykinesia
Inability to initiate movement
Rigidity
Resting tremor
Apathy
Facial masking
Inability to emote
Cognitive impairments
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Anecdotal Problems - Physical
Dyskinesia
Stares and reactions of other people
Freezing in the middle of movement
Internal tremor
Losing the arm swings and evenness of steps
Getting stuck at doorways or narrow isles
Adjusting the speed of speech and projection of voice
Anecdotal Problems - Psychological
Lack of confidence
Being treated or talked to like a child
Anger, agitation, anxiety, depression, and frustration
Losing sense of “self”
Need for connection and expressing emotions
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Movement and Creative Therapies
Forced exercise – cardio, endurance
Tandem cycling
Strenuous exercise therapy
Tai chi, yoga, meditation– balance,
posture, flexibility, being centered
Rock steady boxing – power,
strength, speed
Music therapy – controlling anxiety,
communication, sense of well being,
rhythm
Why Dance for PD?
Dance develops strength, flexibility,
and coordination skills
Improvisation and story telling
stimulate creativity, communication,
and expression
Dance increases the awareness of
body parts in space
• Choreography helps participants to develop cognitive strategies
• Circle and line dances foster social interaction, create a sense of connection
and community.
• Dance allows for meditation
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Why Dance for PD?
Musicality improves their sense
of rhythm and allows for
emotional exploration
Dance focuses attention on eyes,
ears, and touch as tools to assist
in movement and balance
• Dance is FUN! – they want to come back
• Dance is aesthetic, helps them feel graceful and beautiful
• Dance helps build confidence and provide them with an opportunity to give
back to the community
Dance for PD is NOT a Treatment
Dance for PD emphasizes…
Dancing for dancing’s sake
Aesthetic objectives
Use of live music
Using forms and techniques that inspire movement in entire body
Choreography, improvisation, story telling
Learning to think like a dancer to move (and solve challenges) with grace and joy
Rather than…
Focusing on movement as a way to reduce symptoms
Mechanical, clinical, or practical goals
Dancing to recorded music
Using generic movement that aims to exercise specific parts of the body
Rote repetition of movement for the sake of exercise
Thinking like a patient and thinking movement as a prescription or dosage
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
ManagingManagingManaging
thethethe
Emotional ChallengesEmotional ChallengesEmotional Challenges
ofofof
Chronic IllnessChronic IllnessChronic Illness
Isabel Kliss
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Managing the
Emotional Challenges
of Chronic Illness
Isabel J. Kliss, DNP, APRN, ANP-BC
October 8, 2015
Family
and
friends
Health
Care
Finances
Caregivers
The
Future
Chronic
versus
acute
Emotions
Decision-
Making
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Theories of Loss and Grief
• Freud’s Model of Bereavement
• Kübler-Ross 5 Stages of Grief
• Bowlby’s Attachment Theory
• Lindemann’s Grief Work
• Rando’s Six “R” Model
• Le Poiedevin’s Multidimensional Model
• Strobe’s Dual Process ModelPedro (2012). Theories of loss and grief. CE_tuesday. Retrieved September 28,
2015 from http://www.cetuesday.com/theories-of-loss-and-grief/
Attachment Theories
• Freud’s Model of Bereavement– Searching for attachment that has been lost
– Depression occurs when mourning goes wrong
– Search for new attachments/rebuild world
• Bowlby’s Attachment Theory– Attachments offer security/survival
– Distress and emotional disturbance with loss
– Numbing, yearning and searching, disorganization,
reorganization
Pedro (2012). Theories of loss and grief. CE_tuesday. Retrieved September 28,
2015 from http://www.cetuesday.com/theories-of-loss-and-grief/
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Grief Models
• Kübler-Ross’ 5 Stages of Grief– Denial
– Anger
– Bargaining
– Depression
– Acceptance
• Lindemann’s Grief Work– Emancipation from the deceased
– Readjustment to the environment
– Formation of new relationships
Axelrod, J. (2014). The 5 Stages of Loss and Grief. Psych Central. Retrieved
September 28, 2015 from http://psychcentral.com/lib/the-5-stages-of-loss-and-grief/
Pedro (2012). Theories of loss and grief. CE_tuesday. Retrieved September 28,
2015 from http://www.cetuesday.com/theories-of-loss-and-grief/
Other Models
• Rando’s Six “R” Model– Recognize, react, recollect, relinquish, readjust, reinvent
• Le Poidevin’s Multidimensional Model– Emotional, social, physical, lifestyle, practical, spiritual,
identity
• Strobe’s Dual Process Model
– Loss of orientation
– Restoration orientation
Pedro (2012). Theories of loss and grief. CE_tuesday. Retrieved September 28,
2015 from http://www.cetuesday.com/theories-of-loss-and-grief/
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So What Does All This Mean?
Frankly…
• People grieve and mourn
• It’s normal to have “good days” and
“bad days”
• It’s normal to have “good moments” and
“bad moments”
• Emotions don’t follow models
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
The Patient
Common “Negative”
Emotions
• Shock
• Numbness
• Anger
• Fear
• Hopelessness
• Depression
• Denial
• Others
Common “Negative”
Reactions
• Withdrawal
• Crying
• Changes in appetite
• Changes in sleep
patterns
• “Why me” conversation
• Not acknowledging the
facts
• Lashing out
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Family/Friends
Common “Negative”
Emotions
• Shock
• Numbness
• Anger
• Fear
• Hopelessness
• Depression
• Denial
• Others
Common “Negative”
Reactions
• Withdrawal
• Crying
• Changes in appetite
• Changes in sleep
patterns
• “Why me” conversation
• Not acknowledging the
facts
• Lashing out
Talk to the Providers
• For the patient: take
someone with you
• For the family/friends:
Allow the patient to take
the lead
• Ask questions
• Ask for a second opinion
if desired
• Ask for clarification when
something isn’t clear
• Most of the time: You
have time to think about it
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
So What Next?
• Make Plans
– http://theconversationproject.org
– https://www.health.ny.gov/professionals/pa
tients/patient_rights/molst/
– https://www.health.ny.gov/forms/doh-
1430.pdf
– http://www.sharingyourwishes.org
Tips for Emotional Health
• Stay active
– Physical exercise, social connections, and
intellectual challenges help maintain
balance
• Get some rest
– It’s ok to nap
– Try to get 8 hours of uninterrupted sleep
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Tips for Emotional Health
• Eat right
– It’s tempting to eat a gallon of ice cream;
it’s ok on occasion
– Down and dirty way to figure out balanced
meals
Vegetables
(non-starchy)
Meat Starch
Dairy
Tips for Emotional Health
• Be kind to yourself– Take time for yourself: read, get a haircut, watch a
movie, etc…
– Do something you’ve wanted to do but haven’t
– Allow yourself time to process what’s happening
– Recognize that you can’t change your emotions,
only your reactions
– Ask for help
• Keep a journal
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Ask for Help
• Asking for help is not shameful
• Community resources
– http://www.aging.ny.gov
– http://www.ongov.net/aging/
– Support groups
– Local and national organizations
• http://www.parkinson.org
– Religious organizations
Ask for Help
• Health care resources
– http://www.upstate.edu/hospital/providers/l
ocations/?clinicID=512
– http://www.ongov.net/ocdmh/
– http://namisyracuse.org
– http://www.cnyservices.org
– http://www.cayugacounseling.org
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Ask for Help
• Treatment Options
– It can take awhile to find the right approach
– Medication
– Counseling
– Combination of the above
REMEMBER: YOU DON’T
HAVE TO GO IT ALONE
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ImprovingImprovingImproving
andandand
MaintainingMaintainingMaintaining
Strength and BalanceStrength and BalanceStrength and Balance
Susan Jarmel
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Improving and Maintaining Strength & Balance
For The Parkinson's Disease Patient
By Susan Jarmel, Physical Therapist
Jarmel Physical Therapy
Live a Full Active Life With PD
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Parkinson's Disease is a Movement Disorder
• KEY word is MOVEMENT
• Learn SPECIFIC MOVEMENT Exercises designed for each individual
• WHY? To maintain and improve your ability to MOVE and NOT allow PD-related symptoms to stop you from a Life of Quality
• WHEN should you start in your Exercise Therapy Program? NOW!
• HOW do I start? Ask your neurologist for a prescription requesting Physical Therapy evaluation and treatment for PD - Seek a physical therapist who specializes in working with PD/Neurorehabilitation
MOVEMENT PROBLEMS COMMON in
PD
• Type 1 = Inability to Move Common example= FREEZING
• Type 2 = SLOWNESS of Movement
•
• Type 3 = Abnormal motion - ie. PILL-ROLLING TREMOR of hands
• Type 4 = Muscle Tone STIFFNESS - Rigidity
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PD-Related Physical/Functional Issues
• SPEECH Changes - ie. quiet voice/low volume
• WRITING Changes- handwriting becomes small
• FACIAL EXPRESSION Changes - Mask Face
• DECREASING FLEXIBILITY/ROM - including Neck and Trunk
• DECREASING MUSCLE STRENGTH including Core Strength
• IMPAIRMENT of WALKING AND BALANCE - ie. Festinating Gait/Propulsion/Difficulty with "transitional" steps/Decrease of Reciprocal Armswing
• ADL Limitations and Limitations in Everyday Tasks in Home and Out
Benefits of PD Exercise Program
• Brain's ability to COMPENSATE for damage (from injury / disease) by REORGANIZING and FORMING NEW neural connections through stimulation via SPECIFIC exercises!
• Improved joint ROM and muscular Flexibility
• Improved muscle strength/Postural and Core muscle strength
• Improved Equilibrium and Balance
• Improved ability to Walk with greater safety and decreased risk of falls
• Improved ability to perform ADLs and other daily tasks
• Improved ability to Relax with needed benefits
• Improved ATTITUDE
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
PD EXERCISE PROGRAM
• Aerobic exercise - Frequency = 3-4 times a week /as tolerated
• Relaxation Exercises
• Flexibility Exercises - Frequency = DAILY
• Muscle Strengthening Exercises - including CORE strengthening -
Frequency = 3-4 x per week
• Balance Exercises - Frequency = DAILY
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
EXERCISE POSITIONS
• LYING ON YOUR BACK
• LYING ON YOUR BELLY
• SIDELYING - especially if uncomfortable in prior positions
• ON ALL 4'S
• SITTING on CHAIR with or without Back -
• SITTING on GYM BALL / Lying on Belly on Ball/Lying with Back on Ball/Legs on Ball
• STANDING - With Support such as Holding on to Kitchen Sink/Back of Chair
• MOVING - Walk/Dance/Tai Chi with or without use of Assistance/ Assistive Device
• Modified YOGA / PILATES Positions
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
EXERCISES -Lying on
Back/Lying on Belly
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EXERCISES-On All 4's
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Exercises on Abdomen
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THANK YOU FOR YOUR TIME AND
FOR YOUR COURAGE
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
TreatmentTreatmentTreatment
AdvancesAdvancesAdvances
Dr. Dragos Mihaila
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
PARKINSON’S DISEASETreatment Update 2015
Dragos Mihaila, MDDirector, Parkinson’s Disease & Movement Disorders Clinic
Associate Professor, Department of NeurologySUNY Upstate Medical University
Syracuse VA Medical Center
Outline
• Refresher of the “old”, “established” treatments in Parkinson’s disease
• Discuss the “newest” treatments recently approved to use in Parkinson’s disease
• Updates on current research and opportunities for participation in research studies
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Parkinson’s disease
• Progressing neurological disease of unknown cause
• ManifestationsA. Motor: TRAP (tremor, rigidity, akinesia, postural
instability)
B. Non-motor: A. Autonomic: orthostatic hypotension, constipation, heat/cold
intolerance
B. Neuropsychiatric: anxiety, depression, cognitive decline-dementia, hallucinations, other
C. Sleep-related: restless legs, dream-enacting behaviors (RBD), sleep apnea, insomnia, frequent awakenings, excessive sleepiness
D. Other: diminished/absent sense of smell, pain, other
Treatment on Parkinson’s disease
• Treatments to restore normal neurological function or to prevent further neurological deterioration: NONE AVAILABLE AT THIS TIME!
• Treatments of motor manifestations
– Medications
– Surgery
• Treatments of non-motor manifestations
– Medications
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Physical exercise!
“Established” Treatments of Motor Dysfunction
• carbidopa/levodopa (C/L)– Standard formulation
– Extended-release formulation
– Oral disintegrating (Parcopa)
– C/L + entacapone (Stalevo)
• Dopamine agonists– Tablets (including ER)
• Pramipexole, ropinirole
– Patch• Rotigotine (Neupro)
– Subcutaneous injectiions• apomorphine
• MAOB inhibitors– Selegiline
– Rasagiline (Azilect)
• COMT inhibitors– Entacapone (Comtan)
– Tolcapone (Tasmar)
• Other– Anticholinergic
• Benztropine
• Trihexyphenidyl
– Amantadine
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Levodopa
• The good:
– THE MOST EFFECTIVE MEDICATION
• The bad:
– MOTOR FLUCTUATIONS AND DYSKINESIA
Long Term Motor Complications of Levodopa
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Medication Management of Motor Complications
• Motor fluctuations
– Add dopamine agonists and/or MAOB inh/COMT inhibitors to levodopa
– Increase the frequency of doses of levodopa
• Dyskinesia
– Amantadine reduces severity of dyskinesia
– Reduce individual doses of levodopa and other dopaminergic medications
DBS Surgery for Parkinson’s disease
• Significant reduction of disabling OFFs and dyskinesia
• Potential for side effects of stimulation and complications of surgery and hardware
• Contraindicated in patients with more than mild cognitive impairment and uncontrolled psychiatric problems
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
New therapies motor symptoms in Parkinson’s disease
Rytary: FDA approved January 2015
• extended-release formulation of carbidopa/levodopa in 1:4 ratio
• capsules that contain beads of carbidopa and levodopa that dissolve and are absorbed at different rates
• Therapeutic levodopa levels are rapidly achieved and maintained for 4-5 hours
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Rytary: Clinical Trials
• Study 1 (APEX-PD)
• enrolled and randomized 381 levodopa-naive patients.
• The study met its primary efficacy endpoint and showed significantly statistic improvement of the UPDRS 2 (ADL’s) and UPDRS 3 (motor) compared to placebo
Rytary: Clinical Trials
• Study 2 (ADVANCE-PD)
• enrolled 393 patients with advanced Parkinson's disease having "off" time.
• treatment with Rytary reduced the percentage of "off" time (36.9% to 23.8%) from baseline versus immediate-release carbidopa-levodopa (36.0% to 29.8%) during waking hours
• increased "on" time without troublesome dyskinesia during waking hours by 1.8 hours
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Rytary Titration
• dosages of Rytary are not interchangeable with other carbidopa/levodopa products
• Table for conversion from carbidopa/levodopa to Rytary (~ 2:1 conversion ratio)
Issues with Conversion
• Conversion from Sinemet IR to Rytary– 60% of patients required higher daily doses than suggested
by the table and 16% required lower daily dosages
• Conversion from Sinemet CR to Rytary– Start a dose 30% lower than a similar dosage conversion
from carbidopa/levodopa IR
• Conversion in patients taking entacapone to Rytary– entacapone facilitates access of more levodopa to brain
– use a 2.5 conversion
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Rytary in levodopa-naïve patients
• Start the smallest dose 23.75 mg /95 mg three times daily for 3 days then increase to 36.25 mg / 145 mg three times daily
Rytary Administration
• should be swallowed whole with or without food
• A high-fat, high-calorie meal may delay the absorption of levodopa by about 2 hours
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
DUOPA™ (carbidopa and levodopa) Enteral Suspension
Approved by FDA in January 2015 Approved in Europe for 15 years The infusion provides very stable levodopa
plasma levels Monotherapy (no other medications
needed) Pump is turned off at night and bolus is
given in the morning, followed by continuous rate
Duopa: Indications
• Patients with advanced Parkinson’s disease who have disabling motor fluctuations and dyskinesia that have failed other medical treatments
– Same indications that apply for DBS surgery, but less contraindications (i.e. cognitive impairment, unstable mood)
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Duopa: Studies Results
• decrease in daily “off” time
• Improvement of gait dysfunction and freezing
• improvements in non-motor symptoms
• Improved quality of life
• Improved dyskinesia severity
• Increased “on” time without disabling dyskinesia
• Duopa decreased “off” time and increased “on” time without dyskinesia by an average of four hours per day each
Potential Issues with use of Duopa
• Technical issues related to device/system malfunctioning
• infection and intestinal complications (ileus, ischemia, hemorrhage, obstruction and perforation)
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
New therapies for non-motor issues in Parkinson’s disease
Orthostatic hypotension
• Significant drop in blood pressure upon standing (>20 mmHg systolic blood pressure)
• Symptoms brought on by standing: lightheadedness, dimming of vision, neck and shoulders ache; fainting
• Common in Parkinson’s disease; more severe in advanced PD
• Factors that can exacerbate OH: medications (antihypertensive, most of medications for PD, other), dehydration, infections, co-existing conditions (diabetic neuropathy), other
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Treatment
• Non-pharmacological:
– High-thigh elastic stockings and abdominal binders
– Increase water intake and salt intake
• Pharmacological:
– Fludrocortisone
– Midodrine
– other: pyridostigmine (small case series reports)
Droxidopa (Northera)
• FDA approved in 2014 to treat OH in:
– Parkinson’s disease
– Multiple system atrophy
– Pure autonomic failure
• In clinical trials droxidopa has been shown to improve symptoms of hypotension, and increased standing BP
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Psychosis in PD
• Hallucinations, delusions, paranoia are very disabling manifestations of advanced Parkinson’s disease
• Herald onset of dementia and more common in patients with PD dementia
• Associated with poor quality of life, significant caregiver distress, increased nursing home placement
• Current drug treatment: – Quetiapine and clozapine: not FDA approved to treat PDP
• Effective without worsening of motor symptoms
• Increase mortality in elderly
• Not specifically designed to treat PD psychosis
Upcoming Treatment for PD psychosis
• Pimvanserin (Nuplazid): no dopamine blocking activity• In a Phase III clinical trial, pimvanserin showed highly
significant benefits:– reduced psychosis scores– reduce caregiver burden– improved night-time sleep quality and daytime wakefulness
• open-label extension study has further demonstrated that pimavanserin is safe and well-tolerated with long-term use
• FDA granted “breakthrough therapy” designation late 2014, but company still needs to submit new drug application for FDA approval
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Emerging TherapiesCurrent Clinical TrialsNeuroprotection & Restoration
• Isradipine– Approved antihypertensive, Ca channel blocker
• Overactive calcium channels may play a role in the death of the dopamine producing cells in the brain
• Prior epidemiological studies have shown that people taking isradipine for high blood pressure have a lower incidence of PD
– study will enroll 336 participants in a multi-center study at approximately 56 sites across the US and Canada
– Actively enrolling (closest centers Strong and AMC)• Early PD
• NOT receiving dopaminergic therapy
Neuroprotection & Restoration• Inosine
– risk of PD has been consistently shown to be lower and the speed of disease progression slower in patients with higher urate levels
– Urate is a potent endogenous antioxidant and metal chelator
– Inosine increases the levels of urate• high urate levels are also responsible for the development
of gout and uric acid kidney stones
– NIH funding recently approved. Study to start enrolling in the next 6 months
• SUNY Upstate on the list of potential sites for the study
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Neuroprotection & Restoration
• PD01A, a vaccine targeting alpha-synuclein
• Promising Phase 1 clinical trial results– Safe
– Presence of antibodies identified in 50% of patients
• New Phase 1 trial planned to start in Austria
• Future studies to determine if reducing the alpha-synuclein results in stopping or progression of the motor and non-motor symptoms
Emerging TherapiesNew Levodopa Delivery Systems
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Inhaled carbidopa/levodopa
• CVT-301 – inhaled formulation of levodopa
• Intrapulmonary absorption of levodopa
• Phase 2 studies showed rapid improvement in PD symptoms when administered as needed in patients with wearing off
• Multicenter Phase 3 study currently enrolling at SUNY Upstate Neurology
• Contact: Jennifer Moore, Clinical Research Associate 315 464- 4619
Pump-Patch Levodopa
• Continuous subcutaneous delivery of an adjustable, high dose, LD/CD formulation
• “Liquid levodopa”
• reduce on/off fluctuations in moderate-advanced PD
• Trials currently underway
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Accordion pill• multi-layer structure folded to
resemble an accordion, and placed in a capsule.
• The capsule dissolves in the stomach and the layers of levodopa release the drug over time, straight to the area where the drug is absorbed
Gastro-retentive carbidopa/levodopa, DM-1992(Depomed)
• Extended-release carbidopa/levodopa
• Tablet dissolves into a gel that moves more slowly through intestinal tract
• Phase 2 study: Compared with IR-CD/LD 3-8x/day, DM-1992 2x/day achieved significantly smoother plasma concentrations associated with improved motor performance
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Apomorphine Pump
• strong dopamine agonist• As effective as levodopa• Only available as subcutaneous
injection or infusion• Indicated for management of
advanced Parkinson’s disease with significant motor fluctuations and dyskinesia
• Continuous infusion leads to significant reduction of OFF time and improvement of severity/frequency of dyskinesia
• Side effects: nausea/vomiting, infusion-site infection/nodules, compulsive behaviors
Advances in Deep Brain Stimulation
Interleaved stimulation; technology implemented in the latest generation of stimulators
• Two pulses with different combinations of active electrodes, amplitudes, and pulse widths can be programmed for each lead
• The pulses are delivered in an alternating interleaved fashion
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Advances in Deep Brain Stimulation
Closed loop adaptive DBS
Conventional DBS (cDBS) is delivered with constant parameters, regardless of the individual patient’s clinical state
Adaptive DBS (aDBS), is based on closed-loop systems using a control signal captured through a sensor. The signal is then fed into a controller circuit, which in turn adapt stimulation parameters moment-by-moment to the patient’s clinical state
Advances in Deep Brain Stimulation
Directional steeringexperimental
fine control the size and shape of stimulation
multi-directional stimulation which increases target efficiency and reduces risk of stimulation of unwanted structures
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
MR-Guided Focused UltrasoundExperimental; non-invasive surgery
high intense focused ultrasound which heats and non-invasively destroys the targeted tissue
MRI used for visualization of anatomical structures and treatment control
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Summary
• Biotechnological advances provide hope for better delivery of old but effective treatments
• New ideas have emerged about progression of Parkinson’s disease and means to halt its progression
• No progress is possible without coordinated efforts of patients and doctors in advancing these ideas through clinical research
THANK YOU!
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InnovativeInnovativeInnovative
DevicesDevicesDevices
andandand
EquipmentEquipmentEquipment
Anthony Joseph
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Anthony Joseph, MSW, MPA, LNHAVP, Long Term Care Services
Samaritan Health SystemWatertown, NYOctober 8, 2015
Specialty Care Residences in Long Term Care:Parkinson Disease and Telemedicine
Disclosures: The planner and presenter of this educational activity have no relationship with commercial entities or conflicts of interest to disclose
Planner:
Anthony Joseph, MSW, MPA, LNHA
VP, Long Term Care Services
Presenter:
Anthony Joseph, MSW, MPA, LNHA
VP, Long Term Care Services
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Specialty Care Residences in Long Term Care:Parkinson Disease and Telemedicine
Disclosure
Speaker:
Anthony Joseph, MSW, MPA, LNHA
VP, Long Term Care Services
The speaker has no relevant financial relationships to disclose
The speaker has no relevant nonfinancial relationships to disclose
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Developing Technology for
Residents in
Long-Term Care
Specialty Residences within nursing facilities along with the integration of cost effective technology and specialty education can improve the care nursing facilities provide.
Nursing facilities for too long have been generalist providing services to those with chronic issues rather than focusing in on specific disease.
Although staff would have some training in certain disease the residents received far less than specialized care.
In addition, nursing facilities lagged well behind other healthcare providers in the use of technology to assist them in service delivery.
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As leaders in telehealth and technology in healthcare, the Presbyterian Home of Central New York has launched and maintained an accredited technology based Parkinson program for five years now.
The purpose of this particular “How to” Program is so that other facilities can emulate not only a program beneficial to their community but a program that is beneficial to their facility as well.
Overview
Involvement/Benefits
Key Involvement Administration/CEO/Board
Members Physician/Neurologist Pharmacy Social Services/Admissions Dietary Nursing/Nurse Practitioner Development/Marketing Activities Finance Education Therapy Pastoral Care
Overall Benefits Financial (Private Pay) Increase in Census Quality of care increases due
to specialty trained staff Unique programs designed
specifically for residents Facilitate Support Groups RUGS category for MDS =
increase in reimbursement rate
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Education of Disease process
Knowledge of Symptoms
Communication with interdisciplinary Team
Family Involvement
Resident Involvement
Psychosocial Needs
Utilize Resources to maintain resident independence
Safety needs
Caregivers Evaluation for Technology
Is the resident independent?
What is their personal space like?
Do they have the basic components to start?
Use of technology in resident rooms and physician monitoring through telemedicine
Can they do it from their home or do they need to come to a central location?
Environment for Technology
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Always remember that each person is different
Symptoms may change frequently requiring more staff intervention and more involvement with telemedicine or technology readjustment
Ability to adapt to change important
Individual Needs
Examples of Individual Needs
Decreased strength, coordination and fatigue are common symptoms that can impede ability to complete tasks independently
Implementing hands free appliances or electronics can help with coordination issues
Utilizing voice activation for assistanceTelemedicine visits for convenience, cost savings,
time, energy and health
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Information TechnologyHardware and Software
Specifications for Telemedicine Program
Specifications/Hardware
Sony EVI D100 CCTV camera color - optical zoom: 10 x
Current Price is $839.00
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Specifications/Hardware
Sony EVI D100 CCTV camera color -optical zoom: 10 x Current Price is $839.00
LifeCamCurrent Price $79.95
Software
Polycom software:
Cost around $200.00 per license
The other component needed is a broadband connection.
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Funding and Marketing your
Technology Program
Grants
Fundraising
Community Outreach
Donor Relations
Publicity
Funding/Marketing
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Know your grantors and what they are looking for
Looking into local support for your programs
Government support/lobbying
Don’t be afraid to re-apply
Grants
Fundraising
Utilize fundraisers not only for making money but for public awareness
Keep detailed records of supporters
Hold events that are unique to your cause
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Donor Relations
Keep donors updated with progress of projects
Let people know that you value them and their commitment
Recognize every donor ($1.00 - $1,000.00) with a letter acknowledging their donation
Publicly recognize donors in newsletters
Questions?
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New MedicationsNew MedicationsNew Medications
Kelly Braham
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Kelly R. Braham, PharmD
Geriatric Emergency Medicine (GEM) & Transitional Care Unit Clinical Pharmacist
Upstate Medical University, Community Campus
[email protected] 1October 8th, 2015
Progressive
degeneration of
dopamine-containing
neuron in the
substantia nigra
Dopamine cannot be
used for treatment
Doesn’t cross the
blood brain barrier
2Updated by: A.D.A.M. Health Solutions Editorial Team, Ebix, Inc.: David Zieve, MD, MHA, and David R. Eltz. Previously reviewed by Luc Jasmin, MD, PhD, Department of Neurosurgery
at Cedars-Sinai Medical Center,
Los Angeles, and Department of Anatomy at UCSF, San Francisco, CA. Review provided by VeriMed Healthcare Network (9/26/2011).
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Individualized therapy for each patient
Patient’s symptoms
Age
Stage of disease
Degree of functional disability
Level of physical activity and productivity
3
Treatment
New Treatments
Duopa
Rytary
New medications not yet on the market
4
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FDA approved January 2015
For advanced Parkinson’s patients
Extended release enteral suspension
Administered via a small, portable infusion pump
into the small intestine for 16 continuous hours
via a procedurally-placed tube
5http://images.alfresco.advanstar.com/alfresco_images/HealthCare/2015/02/06/05368791-3210-4313-aecd-f34c99b75dda/NP_Duopa_web.jpg accessed 4/25/2015.
http://www.rxabbvie.com/pdf/duopa_pi.pdf accessed 4/27/2015Product Information: DUOPA enteral suspension, carbidopa levodopa enteral suspension. AbbVie, Inc. (per FDA), North Chicago, IL, 2015.
6http://www.rxabbvie.com/pdf/duopa_pi.pdf accessed 4/27/2015Product Information: DUOPA enteral suspension, carbidopa levodopa enteral suspension. AbbVie, Inc. (per FDA), North Chicago, IL, 2015.
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Living an Active Life with Parkinson’s Disease Conference - October 8, 2015
Treatment initiated in 3 steps:
1. Conversion of patients to oral immediate-
release carbidopa-levodopa tablets in preparation
for DUOPA treatment.
2. Calculation and administration of the DUOPA
starting dose (Morning Dose and Continuous Dose)
for Day 1.
3. Titration of the dose as needed based on
individual clinical response and tolerability.
7http://www.rxabbvie.com/pdf/duopa_pi.pdf accessed 4/27/2015Product Information: DUOPA enteral suspension, carbidopa levodopa enteral suspension. AbbVie, Inc. (per FDA), North Chicago, IL, 2015.
Infusion Interruption
Shower, swim, medical procedure, et al <2 hours:
No supplemental oral medication is needed, but the
patient may need to take and extra-dose of Duopa
before disconnecting
8http://www.rxabbvie.com/pdf/duopa_pi.pdf accessed 4/27/2015Product Information: DUOPA enteral suspension, carbidopa levodopa enteral suspension. AbbVie, Inc. (per FDA), North Chicago, IL, 2015.
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After 16 hour infusion,
disconnect the pump from
the PEG-J tube and give
the nighttime dose of the
oral immediate-release
carbidopa/levodopa tablets
9http://www.rxabbvie.com/pdf/duopa_pi.pdf accessed 4/27/2015Product Information: DUOPA enteral suspension, carbidopa levodopa enteral suspension. AbbVie, Inc. (per FDA), North Chicago, IL, 2015.
Benefits
Greater control in
more advanced
cases of Parkinsons
Side Effects
Lower blood pressure
Dizziness or fainiting
Fast, irregular heart beat
Suddenly falling asleep
May worsen depression
10http://www.rxabbvie.com/pdf/duopa_pi.pdf accessed 4/27/2015Product Information: DUOPA enteral suspension, carbidopa levodopa enteral suspension. AbbVie, Inc. (per FDA), North Chicago, IL, 2015.
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High-Protein Diet
Levodopa competes with certain amino acids for
transport across the gut wall, the absorption of
levodopa may be decreased with a high protein
diet
Iron Salts or Multivitamins
May reduce the bioavailability of the drug
Separate administration
11http://www.rxabbvie.com/pdf/duopa_pi.pdf accessed 4/27/2015Product Information: DUOPA enteral suspension, carbidopa levodopa enteral suspension. AbbVie, Inc. (per FDA), North Chicago, IL, 2015.
Dietary protein may decrease the effectiveness
of levodopa by competing with the drug for
absorption from the intestine and transport
across the blood-brain barrier
12Cartoon credit: https://faculty.washington.edu/chudler/cart.html
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Treatment
New Treatments
Duopa
Rytary
New medications not yet on the market
13
Extended release capsules
Starting dose is 23.75mg/95mg three times daily,
may increase on the fourth day of treatment
14Rytary. (2015, January 1). Retrieved from http://www.accessdata.fda.gov/drugsatfda_docs/label/2015/203312s000lbl.pdfProduct Information: LODOSYN(R) oral tablets, carbidopa oral tablets. Valeant Pharmaceuticals North America LLC (per FDA), Bridgewater, NJ, 2014.
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15Rytary. (2015, January 1). Retrieved from http://www.accessdata.fda.gov/drugsatfda_docs/label/2015/203312s000lbl.pdf
A high-fat, high-calorie meal may delay the absorption of levodopa by about 2 hours
Consideration should be given to taking the first dose of the day about 1 to 2 hours before eating
May be taken with or without food- DO NOT CHEW, DIVIDE or CRUSH capsule
For patients who have difficulty swallowing intact capsules:
Carefully open the capsule, sprinkling the entire contents on a small amount of applesauce (1 to 2 tablespoons), and consuming immediately.
Do not store the drug/food mixture for future use.
16Rytary. (2015, January 1). Retrieved from http://www.accessdata.fda.gov/drugsatfda_docs/label/2015/203312s000lbl.pdf
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Adverse Effects:
Falling asleep during ADL
Confusion
Dizziness
Hallucinations
May increase intraocular pressure, regular eye exams
for glaucoma
Abrupt discontinuation may cause high fever and
confusion
Impulse control/compulsive behavior
17Rytary. (2015, January 1). Retrieved from http://www.accessdata.fda.gov/drugsatfda_docs/label/2015/203312s000lbl.pdf
Treatment
New Treatments
Duopa
Rytary
New medications not yet on the market
18
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19http://www.amethystls.com/biotechpro.shtml
An oral, once daily adjunctive therapy for any
stage of Parkinson’s disease
Improved motor skills compared to placebo and
for those on a stable dose of a dopamine agonist
Studied in patients with Parkinsons for <5 years
Multiple mechanisms of action
MAO-B, dopamine reuptake, & glutamate
20Stocchi F, Borgohain R, Onofrj M, et al. A randomized, double-blind, placebo-controlled trial of safinamide as add-on therapy in early Parkinson's disease patients. Mov Disord 2012; 27:106–112.
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Transdermal patch
Partial dopamine-receptor agonist
Full serotonin-receptor agonist
Still being studied
Early phase studies show statistically significant
response compared to placebo in patients not taking
anti-Parkinson’s disease medications
Most common side effects:
Nausea, dizziness, and somnolence
Most ADE occurred during dose titration
21Sampaio C, Bronzova J, Hauser RA, et al. Pardoprunox in early Parkinson's disease: results from 2 large, randomized double-blind trials. Mov Disord 2011; 26:1464–1476.
New formulation of carbidopa/levodopa Contains both immediate and extended release
components
Studied in Parkinson’s patients not taking levodopa or dopamine agonists with a mean duration of Parkinsons approx 2 years
Significant improvement in mentation, ADL, motor and total scores
Most common side effects include nausea, headache, dizziness, and insomnia
Tended to be more common with higher doses
22Louden K. New Treatment Options for Parkinson's Disease Show Promise. Medscape [homepage on the Internet]. 2008 [cited 2015 Sep 2]. Available from: http://www.medscape.com/viewarticle/576917
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Recent research has begun to focus on anti-malarial compounds and their usefulness in Parkinson’s disease
Nurr1, a protein is important in both development and maintenance of dopamine May prevent dopaminergic neurons from damage and
death
Discovered that chloroquine and amodiaquineact at Nurr1, anti-malarial meds
Research has been successful in rats and is now being shifted to human subjects
23Paddock C. Parkinson's disease may be treatable with antimalaria drugs. Medical News Today [homepage on the Internet]. 2015 [cited 2015 Sep 1]. Available from: http://www.medicalnewstoday.com/articles/296919.php
24McGuire Kuhl, M. (2015). Inosine Trial Secures Phase III Funding to Study Effect on Slowing Parkinson’s. Retrieved 2015, from
https://www.michaeljfox.org/foundation/news-detail.php?inosine-trial-secures-phase-iii-funding-to-study-effect-on-slowing-parkinson
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Phase II study showed that with medical supervision,
can safely raise levels of the antioxidant urate by
taking the urate precursor inosine
Research has shown higher levels of urate were
associated with lower risk of and slower progression of
Parkinson’s disease
“Preliminary data from the study certainly have been
supportive of the potential for slowing down the
disease, but a really definitive engagement of that
hypothesis requires a much larger trial, and that’s
what we’re on the threshold of pursuing here,” said
Michael Schwarzschild, MD, PhD, lead investigator
25McGuire Kuhl, M. (2015). Inosine Trial Secures Phase III Funding to Study Effect on Slowing Parkinson’s. Retrieved 2015, from
https://www.michaeljfox.org/foundation/news-detail.php?inosine-trial-secures-phase-iii-funding-to-study-effect-on-slowing-parkinson
Inosine is already commercially available
Foundation and government funding is essential for testing its efficacy as a Parkinson’s treatment. Pharmaceutical companies are not incentivized to invest in testing of a compound already on the market.
Inosine is available commercially as a dietary supplement, but patients should act with caution
Inosine has not been proven as a therapy for Parkinson’s, and, in the absence of medical supervision, it can cause serious side effects:
Gout, kidney stones and possibly high blood pressure
It is critical to discuss any medications or natural supplements with your physician before taking them.
26McGuire Kuhl, M. (2015). Inosine Trial Secures Phase III Funding to Study Effect on Slowing Parkinson’s. Retrieved 2015, from
https://www.michaeljfox.org/foundation/news-detail.php?inosine-trial-secures-phase-iii-funding-to-study-effect-on-slowing-parkinson
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Nerturin (CERE 120) to
rejuvenate degenerating
nigrostriatal neurons in
moderately advanced PD
3 clinical trials have been completed and the 4th
pivotal trial has completed dosing and continues
to evaluate subjects for efficacy and further
safety
Side effects include incision site pain, headache,
abnormal dreams, procedural pain, nausea, &
dyskinesia27Expert Opin Biol Ther. 2013 Jan;13(1):137-45. doi: 10.1517/14712598.2013.754420.
AADC, aromatic L-amino-acid decarboxylase
Transforms levodopa into the neuronal messenger
dopamine
Being assessed for safety currently in a trial
There is great potential for PD, first being
studied for a pediatric neurotransmitter disease
called AADC deficiency that affects approx 120
kids worldwide
In this disease, children as young as two years old
experience parkinsonian-like symptoms such as
rigidity, stiffness, and limb tremor.
28Herpich, N. (2013). Gene Therapy Approach Targets Both Parkinson's and Pediatric Neurotransmitter Disease. Retrieved 2015.
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Have an email signup for new developments
Davis Phiney Foundation for Parkinson’s
American Parkinson’s Disease Association (APDA)
National Parkinson Foundation (NPF)
Parkinson’s Disease Foundation (PDF)
National Institute of Neurological Disorders and Stroke (NINDS)
29
Questions?
30
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FinancialFinancialFinancial
andandand
Legal IssuesLegal IssuesLegal Issues
Tim Crisafulli
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4500 Pewter Lane, Marketplace Building 10, Manlius, NY 13104www.cg-lawyers.com | (315) 309-8211
Timothy P. Crisafulli, Esq.Crisafulli Gorman, PC
Three Part Approach
Advance Lifetime Asset
Directives Asset Preservation
Preservation After Death
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Advance Directives
- Durable Power of Attorney
- Gifts Rider
- Health Care Proxy
- Living Will
- Medical Orders for Life Sustaining Treatment (MOLST)
© Copyright Crisafulli Gorman, PC
Advance Directives: Durable Power of Attorney
- Limited to financial matters
- Adds Agent(s) with authority to do all things the Principal can do (except new Will)
- Terminates upon:
-Revocation
-Death
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Advance Directives: Durable Power of Attorney
-What happens if Agents misbehave?
-Accounting Proceeding
-May have to return Assets improperly withdrawn.
© Copyright Crisafulli Gorman, PC
Advance Directives: Durable Power of Attorney
Alternative: Guardianship Proceeding
◦ Time-consuming
◦ Expensive
◦ contested
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Health Care Proxy
- Medical decision making
- Effective during incapacity, only
- HIPAA language is important
- Generally appoint a proxy and a successor
© Copyright Crisafulli Gorman, PC
Living Will
- Guidance for Health Care Proxy
- Out-of-State: demonstration of intent
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Medical Orders for Life Sustaining Treatment (MOLST)
- A Medical Order (created by a physician/qualified medical personnel)
- The “Pink Sheet”
- Typically on bed, bedside table, or refrigerator
- “converts” a person’s wishes into a medical order.
© Copyright Crisafulli Gorman, PC
Three Part Approach
Advance Lifetime Asset
Directives Asset Preservation
Preservation After Death
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Overview of Medicaid Spend-Down Requirements
Applicant Community Spouse
Resource $14,850 up to $119,220
Income $50 $2,980.50
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Overview of Medicaid Spend-Down Requirements
Goal: transfer assets out of one’s own name so that assets are at or below $14,850
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Overview of Medicaid Spend-Down Requirements
Example: Unmarried Dad’s health is failing. He anticipates he will soon need long term care and does not want to spend savings on a nursing home.
On January 1, 2015, Dad transfers his house worth $80,000 to his non-disabled son with whom he does not reside.
On May 1, 2015, Dad has $14,850 in resources and needs skilled care.
© Copyright Crisafulli Gorman, PC
Overview of Medicaid Spend-Down Requirements
5 year look back period: if you transfer assets during the look back period, then you do not receive Medicaid benefits as early as you otherwise would.
Penalty Period = amount transferred
average cost of care
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Overview of Medicaid Spend-Down Requirements
Penalty Period = Amount TransferredAverage cost of care
Penalty Period = $80,000approx. $10,000
Penalty Period = 8 months
Result: Dad must privately pay for care until January 1, 2016.
Note: Son can be sued for recovery
© Copyright Crisafulli Gorman, PC
Strategies for Asset-Preservation
- Planning Mode - (at least 5 years in advance of needing
Medicaid)- Give assets away—outright or in Trust
- Crisis Mode- Spend down on qualified items
- Permitted transfers
- Prepayment of burial/legal expenses
- Promissory note planning
© Copyright Crisafulli Gorman, PC
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Asset Preservation Trust Overview
Irrevocable
Grantor(s) Asset Preservation
Trust
Income Principal
Grantor(s) Beneficiaries
© Copyright Crisafulli Gorman, PC
Planning Mode: Asset Preservation Trust- Irrevocable Trust- Grantor typically must receive all income
generated by assets held in trust- Grantor pays all taxes on assets in trust- Grantor and spouse (if any) “CANNOT” access
principal held in trust- Beneficiaries may access principal- Upon Grantor’s death, assets go to
beneficiaries- As long as assets are in trust 5 or more years
before need for Medicaid, then they are not available resources.
© Copyright Crisafulli Gorman, PC
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Strategies for Asset Protection: an Asset Preservation Trust
- Flexibility in Administration
- Replace primary residence
- Not limited to personal residence
- Cash
- Brokerage accounts
- Most types of assets can be placed in an Asset Preservation Trust
© Copyright Crisafulli Gorman, PC
Strategies for Asset Protection: an Asset Preservation Trust
- “Safety Valves”- Conduit theory: even though grantor and spouse
cannot receive principal, other beneficiaries can…and those other beneficiaries might choose to return principal to grantor and spouse
- Revocation
- Grantor + Trustee + All Beneficiaries
- Power to terminate/replace trustee
- Limited Power of Appointment
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Strategies for Asset Protection: Crisis Mode
- Spend down on qualified items
- Permitted transfers
- Prepayment of burial/legal expenses
- Promissory note planning
© Copyright Crisafulli Gorman, PC
Strategies for Asset Protection: Crisis Mode: Promissory Note Planning
gift
Applicant
loan
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Strategies for Asset Protection: Crisis Mode: Promissory Note Planning
gift
Applicant
loan- Penalty period due to the gift made within the 5 year
look-back period
© Copyright Crisafulli Gorman, PC
Strategies for Asset Protection: Crisis Mode: Promissory Note Planning
gift
Applicant
loan
- Loan repayments cover the penalty period
© Copyright Crisafulli Gorman, PC
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Strategies for Asset Protection: Crisis Mode: Promissory Note Planning
- Make a gift of approximately half
- Make a loan of approximately half
- The gift triggers a “penalty period,” during which the individual will have to privately pay for his or her care
- The loan repayments are used to privately pay
© Copyright Crisafulli Gorman, PC
Legacy Planning
Property Passing Property Passing
Through Estate By Operation of Law
- jointly titled
- deeds (often)
Intestacy Probate - beneficiary (no will) (will) designations!!
- assets in lifetime trusts
© Copyright Crisafulli Gorman, PC
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Probate: Typical Will Considerations
Husband Wife
Potential issues:
- Available to Wife’s creditors
- Available to wife’s new relationship
- Vulnerable to wife’s long-term care
- Children could be disinherited
© Copyright Crisafulli Gorman, PC
Probate: Typical Will Considerations
Husband TestamentaryTrust
Kids (of first marriage?)Grandkids
© Copyright Crisafulli Gorman, PC
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Legacy Planning
Property Passing Property Passing
Through Estate By Operation of Law
- jointly titled
- deeds (often)
Intestacy Probate - beneficiary (no will) (will) designations!!
- assets in lifetime trusts
© Copyright Crisafulli Gorman, PC
Three Part Approach
Advance Lifetime Asset
Directives Asset Preservation
Preservation After Death
© Copyright Crisafulli Gorman, PC
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4500 Pewter Lane, Marketplace Building 10, Manlius, NY 13104www.cg-lawyers.com | (315) 309-8211
Timothy P. Crisafulli, Esq.Crisafulli Gorman, PC
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