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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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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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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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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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.


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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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.


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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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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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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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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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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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Come Dance With MeCome Dance With MeCome Dance With Me

Movement

For

Healthy Aging

Tumay Tunur

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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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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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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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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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ManagingManagingManaging

thethethe

Emotional ChallengesEmotional ChallengesEmotional Challenges

ofofof

Chronic IllnessChronic IllnessChronic Illness

Isabel Kliss

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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,


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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/



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



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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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The Patient

Common “Negative”

Emotions

• Shock

• Numbness

• Anger

• Fear

• Hopelessness

• Depression

• Denial

• Others


Reactions

• Withdrawal

• Crying

• Changes in appetite

• Changes in sleep

patterns

• “Why me” conversation

• Not acknowledging the

facts

• Lashing out

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Family/Friends


Emotions

• Shock

• Numbness

• Anger

• Fear

• Hopelessness

• Depression

• Denial

• Others


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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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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• 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


• 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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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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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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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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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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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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EXERCISES -Lying on

Back/Lying on Belly

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39


40


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EXERCISES-On All 4's

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45


46


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Exercises on Abdomen

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THANK YOU FOR YOUR TIME AND

FOR YOUR COURAGE

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TreatmentTreatmentTreatment

AdvancesAdvancesAdvances

Dr. Dragos Mihaila

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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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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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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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Levodopa

• The good:

– THE MOST EFFECTIVE MEDICATION

• The bad:

– MOTOR FLUCTUATIONS AND DYSKINESIA

Long Term Motor Complications of Levodopa

55


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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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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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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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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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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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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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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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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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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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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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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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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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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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


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

71


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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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!

73


InnovativeInnovativeInnovative

DevicesDevicesDevices

andandand

EquipmentEquipmentEquipment

Anthony Joseph

74


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:



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Specialty Care Residences in Long Term Care:Parkinson Disease and Telemedicine

Disclosure

Speaker:



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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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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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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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

83


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

84


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?

85


New MedicationsNew MedicationsNew Medications

Kelly Braham

86


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).

87


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.

89


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.


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


90


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


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


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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


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


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.


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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


Treatment

New Treatments

Duopa

Rytary


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



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.



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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

101


FinancialFinancialFinancial

andandand

Legal IssuesLegal IssuesLegal Issues

Tim Crisafulli

102


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

© Copyright Crisafulli Gorman, PC

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Advance Directives

- Durable Power of Attorney

- Gifts Rider

- Health Care Proxy

- Living Will

- Medical Orders for Life Sustaining Treatment (MOLST)


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


104



-What happens if Agents misbehave?

-Accounting Proceeding

-May have to return Assets improperly withdrawn.



Alternative: Guardianship Proceeding

◦ Time-consuming

◦ Expensive

◦ contested


105


Health Care Proxy

- Medical decision making

- Effective during incapacity, only

- HIPAA language is important

- Generally appoint a proxy and a successor


Living Will

- Guidance for Health Care Proxy

- Out-of-State: demonstration of intent


106


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.


Three Part Approach





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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



Goal: transfer assets out of one’s own name so that assets are at or below $14,850


108



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.



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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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


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


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Asset Preservation Trust Overview

Irrevocable

Grantor(s) Asset Preservation

Trust

Income Principal

Grantor(s) Beneficiaries


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.


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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


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


112


Strategies for Asset Protection: Crisis Mode

- Spend down on qualified items

- Permitted transfers

- Prepayment of burial/legal expenses

- Promissory note planning


Strategies for Asset Protection: Crisis Mode: Promissory Note Planning

gift

Applicant

loan


113



gift

Applicant

loan- Penalty period due to the gift made within the 5 year

look-back period



gift

Applicant

loan

- Loan repayments cover the penalty period


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- 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


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


115


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


Probate: Typical Will Considerations

Husband TestamentaryTrust

Kids (of first marriage?)Grandkids


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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


Three Part Approach





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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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For My InformationFor My InformationFor My Information

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living an active life with parkinson's disease

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