PARKINSON’S AWARENESS & SUPPORT ASSOCIATION of the TRI ... · DISEASE 101 Parkinson’s was...
Transcript of PARKINSON’S AWARENESS & SUPPORT ASSOCIATION of the TRI ... · DISEASE 101 Parkinson’s was...
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PARKINSON’S AWARENESS & SUPPORT ASSOCIATION of the TRI-STATE (PASATS)
Resource Guide 2018 www.pasats.org
“The Red Tulips” by Nikki Pritchett
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National Parkinson’s Disease Organizations
Michael J Fox Foundation
www.michaeljfox.org
800-708-7644
Parkinson Foundation
www.parkinson.org
800-473-4636 PD Help Line
Davis Phinney Foundation
www.davisphinneyfoundation.org
866-358-0285
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Local SupportGroups
PASATS- Parkinson’s Awareness and Support
Association of the Tri-State
Meets monthly, check website for details
www.pasats.org
Care Partners Support Group-
Meets bi-monthly, check website for details
www.pasasts.org
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PARKINSON’S DISEASE 101
Parkinson’s was originally described in 1817 by James Parkinson’ in his Essay on the Shaking Palsy. What researchers have come to understand is that Parkinson’s Disease is a neurological disorder in which there is a gradual loss of brain cells that make and store dopamine. Dopamine is a chemical in the brain, known as a neurotransmitter, which sends messages that control movement. As PD progresses, more dopamine neurons in the brain are lost.
The primary symptoms of PD are movement related, and include: resting tremor, rigidity and slowness of movement. However, many patients also experience non-movement related symptoms such as cognitive impairment, mood changes, constipation and blood pressure problems.
The causes of PD remain unknown, although researchers believe the disease may be brought on by a combination of environmental and genetic factors. Available treatments help to reduce some of the symptoms but there is currently no treatment that can slow or stop the disease from progressing over time. Much research is ongoing to identify strategies for improving treatment of PD in the future.
Source: Partners in Parkinson’s- Parkinson’s Disease Guide
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PARKINSON’S DISEASE 101
Parkinson’s patients experience a wide range of symptoms and it varies for each person. There is no diagnostic test that determines whether a person has developed PD, rather a thorough examination of one’s medical history and a physical examination helps to detect symptoms synonymous with PD.
Movement/Motor-Related Symptoms
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Bradykinesia slowing down and loss of spontaneous and voluntary movement
Rigidity unusual stiffness in a limb or other body part
Resting Tremor an uncontrollable movement that affects a limb when it is at rest and usually stops for the duration of a voluntary movement
Postural Instability problems with standing or walking, or impaired balance and coordination, which can lead to falls
Dystonia involuntary movement with a muscle contraction, such as a cramp
Reduced facial expression “mask-like” face due to bradykinesia
Speech and swallowing problems
Dyskinesia involuntary twisting/turning, jerky movements that can result from long-term use of medications that treat PD
Impulse Control inability to resist an impulse that is harmful to self or others that can result from use of medications that treat PD
Other Treatment-Related Symptoms
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Non-Motor Related Symptoms• Cognitive Impairment: decline in ability to multi-task and/or concentrate; potential decline in intellectual functioning and onset of psychosis• Mood changes: can include depression, apathy or anxiety• Sleep disorders: REM sleep behavior disorder, for example, where individuals act out their dreams• Hyposmia: loss of sense of smell• Fatigue• Constipation• Bladder problems: a sudden need to urinate or incontinence• Orthostatic Hypotension: low blood pressure upon standing• Central pain: other than pain caused by posture problems or dystonia
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MEDICATION MANAGEMENT
Because many Parkinson’s symptoms are due to the lack of dopamine—the brain
chemical that plays an important role in behavior, coordination and mobility—
patients are commonly prescribed dopamine medications. Dopamine drug side effects
include: nausea, drowsiness, low blood pressure, hallucinations and dyskinesia—
writhing movements.
Choosing the right medication is directly related to the patient’s ability to handle its
side effects. Balancing the ideal medication program and schedule can be easy for
some and very challenging for others. Medication is most effective when taken on a
regular schedule and combined with exercise, good nutrition and rest.
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COMMON PD MEDSThis list was compiled using information from The Parkinson’s Disease Foundation’s
Parkinson’s Disease Q & A, (Sixth Edition, 2012) and its website http://www.pdf.org/meds_treatments.For more information about medicines, contact your physician.
Class Medication (common name) Function Side Effects
Carbidopa/Levodopa(Sinemet®)Carbidopa/Levodopa controlled release (Sinemet CR®)Carbidopa/Levodpa orally disintegrating tablet (Parcopa®)Carbidopa/Levodopa/Entacapone (Stalevo®)
Apomorphine (Apokyn®)Bromocriptine (Parlodel®)Pramipexole (Mirapex®)Pramipexole dihydrochloride extended-release (Mirapex ER®)Ropinirole (Requip®)Ropinirole extended-release tablets (Requip® XL)Rotigotine transdermal system (Neupro®)
Entacapone (Comtan®)Tolcapone (Tasmar®)
Converts intodopamine to manage major symptoms
Low blood pressure, nausea and vomiting, dyskinesia, dry mouth, dizziness
Stimulates brain as if given dopamine; compliments levodopa & helps deter symptoms beween levodopa doses.
Does not cause dyskinesias, but can lead to nausea, hallucinations, sleepiness & lightheadedness
Helps extend effect of levodopa
Abdominal pain, back pain, constipation, nausea, diarrhea, blood in urine, liver failure
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COMMON PD MEDSThis list was compiled using information from The Parkinson’s Disease Foundation’s
Parkinson’s Disease Q & A, (Sixth Edition, 2012) and its website http://www.pdf.org/meds_treatments.For more information about medicines, contact your physician.
Low blood pressure, nausea and vomiting, dyskinesia, dry mouth, dizziness
Does not cause dyskinesias, but can lead to nausea, hallucinations, sleepiness & lightheadedness
Abdominal pain, back pain, constipation, nausea, diarrhea, blood in urine, liver failure
COMMON PD MEDSAs the pharmaceutical industry continues to evolve, PD patients have many options in which to purchase meds. Below is list of PSC supporters who are in the pharmaceutical industry.
Class Medication (common name) Function
Rasagiline (Azilect®)Selegiline or deprenyl (Eldepryl®)Seleginilie HCI orally disintegrating tablet (Zelapar®)
Benztropine mesylate (Cogentin®)Procyclidine (not in US)Trihexyphenidyl (Artane®)
Blocks enzyme in the brain that breaks down levodopa.
Dizziness, nausea, pain, head-ache, insomnia, rhinitis, dyskinesia, back pain, stomatitis, dyspepsia
Helps with tremors and dystonia
Blurred vision, dry mouth, constipation and urinary retention
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EXERCISEAce CAREUniversity of Evansville Physical Therapy Program812-431-4832https://www.evansville.edu/majors/ physicaltherapy/acecare.cfm
Delay the DiseaseClasses offered at several Evansville locations(812) 297-8658Find the locations at www.pasats.org
Parkinson’s Exercise ClassHealthSouth Deaconess Rehab Hospital 4100 Covert AveEvansville IN 47714812-437-6181 https://www.deaconess.com/Calendars/Community-Calendar/Misc/ Healthsouth-Parkinson-s-Exercise-Class/Parkinson-s-Disease-Exercise-Class-(13)
Rock Steady Boxing Evansville INYMCA Downtown222 NW 6th StEvansville, IN 47708812-492-6713https://www.ymcaswin.org/wp-content/uploads/2018/01/RockSteady-flyer-1-5-18.pdfFor other locations https://www.rocksteadyboxing.org/find-a-class/
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EXERCISEAce CAREUniversity of Evansville Physical Therapy Program812-431-4832https://www.evansville.edu/majors/ physicaltherapy/acecare.cfm
Delay the DiseaseClasses offered at several Evansville locations(812) 297-8658Find the locations at www.pasats.org
Parkinson’s Exercise ClassHealthSouth Deaconess Rehab Hospital 4100 Covert AveEvansville IN 47714812-437-6181 https://www.deaconess.com/Calendars/Community-Calendar/Misc/ Healthsouth-Parkinson-s-Exercise-Class/Parkinson-s-Disease-Exercise-Class-(13)
Rock Steady Boxing Evansville INYMCA Downtown222 NW 6th StEvansville, IN 47708812-492-6713https://www.ymcaswin.org/wp-content/uploads/2018/01/RockSteady-flyer-1-5-18.pdfFor other locations https://www.rocksteadyboxing.org/find-a-class/
Deaconess Pelvic Health & Wellness Center4199 Gateway Blvd.Newburgh, IN 47630812-858-5950https://www.deaconess.com/Locations/The-Womens-Hospital/Services/Pelvic-Health-Wellness-Center
HealthSouth Deaconess Rehabilitation Hospital4100 Covert Ave.Evansville, IN 47715812-437-6121http://www.healthsouthdeaconess.com/en/hospital-programs/rehabilitation-programsLSVT Big & LOUD provider
Progressive Health10455 Orthopedic Dr.Newburgh, IN 47630812-858-2121http://phrehab.com/clinical-management.phpLSVT Big provider
ProRehab (east side office)415 Crosslake DriveSuite BEvansville, IN 47715812-476-0409https://www.prorehab-pc.com/Outpatient & In-Home Services availableLSVT Big provider
Rehab for Life 1449 Kimber Lane, Suite 103AEvansville, IN 47715812-401-5210http://www.myrehabforlife.com/Transportation available
St. Vincent Rehabilitation InstituteOutpatient Rehab - Washington Square Mall1144 Washington SquareEvansville, IN 47714812-485-5200http://www.stvincentevansville.org/services/rehabilitation/LSVT Big & LOUD provider
NOTE: Listing of all LSVT Big & LOUD providers go to www.lsvtglobal.com
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Locally Owned Parmacies
Paul’s Pharmacy East Location1225 Washington Square
Evansville, IN 47715
812-962-3500
www.paulsrx.com
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Pharmaceutical Patient Assistant Program
Needy Medswww.needymeds.org
800-503-6897 Help Line
Partnership for Prescription Assistancewww.pparx.org
888-477-2669
Patient Access Network Foundation (PANF)www.panfoundation.org/parkinsons-disease
866-316-7263
RX Assistance www.rxassist.org
800-808-1213
Select Care Benefits Networkwww.scbn.org
888-331-1002
Restorative Therapy
Deep Brain Stimulation (DBS) Educational ClassesSt. Vincent Evansville
Gift Room
3700 Washington Ave
Evansville, IN 47714
Aaron Stults 763-505-7738
https://www.medtronicdbs.com/
Motion Studio3211 Grant Line Rd. #13 (47150)
www.motionstudioonline.com
812-207-4434
Durable Medical Equipment
Advanced Medical Equipment Services1741 Oak Hill Road
Evansville IN 47711
812-454-5588
Deaconess Home Medical Equipment812-450-4673
800-450-4665
Easter Seals Rehabilitation CenterProvides assistive technology services
and driving assessments
U-Step walkers
812-492-0645
HLS Health + Wellness1330 N. Green River Road
Evansville IN 47715
812-759-6158
St. Vincent Evansville Medical Equipment812-485-4000
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CHARITABLE ORGANIZATIONS
Melvin Weinstein’s Parkinson FoundationAssist PD patients with devices and medicationswww.mwpf.orgEmail [email protected]
HOME HEALTH SERVICES
Deaconess Hospital812-450-3201https://www.deaconess.com/Services/Home-Care-and-Hospice/Home-Health-Care
Home Instead Senior Carewww.homeinstead.com812-471-0050
Horizons Home Carewww.horizonshc.com812-429-0721
Senior Helperswww.seniorhelpers.com812-329-5916
Specialty Home Health Carewww.specialhealthcare.com812-476-5404
St. Vincent Evansville812-774-9760http://www.stvincentevansville.org/services/home-health/
Green Valley Care Centerprivate nursing home accepts Medicare & Medicaid 3118 Green Valley Rd, New Albany (47150)www.greenvalleycarecenter.com(812) 945-2341
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LEGAL & FINANCIAL
Schad & Schad Trial Lawyers223 E Spring St (47150)www.schadlaw.com 812-945-4555
PALLIATIVE CARE SERVICE
Deaconess Hospitalhttps://www.deaconess.com/Services/Palliative-Care812-450-3201
St. Vincent Hospitalhttps://www.stvincent.org/services/hospice812-485-7954
AseraCare Hospice1401 Professional Blvd. #201Evansville, IN 47714http://www.aseracare.com812-858-1032
HOSPITALS & DOCTORS
Southern Indiana Rehab HospitalJen Robinson, PT3104 Blackiston Blvd.New Albany, IN 47150www.sirh.org812-941-8300
Wellstone Regional Hospital2700 Vissing Park Rd,Jeffersonville, IN 47130www.wellstonehospital.com812-284-8000
VETERAN SERVICES
Evansville Health Care Center6211 E. Waterford Blvd.Evansville, IN 47715812-465-6202
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TRANSPORTATION & MOBILITY
DISABLED PARKING PERMITSCity of New Albany (IN)www.cityofnewalbany.com
INDIANAwww.in.gov/bmv/2347.htm812-948-5336
• Motor Vehicle & Boats
• Disabled Parking
• Obtain form from Clerk’s office (available online)
• Form needs physician’s signature and must be notarized
• Small fee
HANDICAPPED PARKING PERMITS
METS -Metropolitan Evansville Transit System (City Bus)METS MOBILITYFor those 65 years or older or those with a documented disability that limits the use of the METS regular route system.812-435-6166
Superior Van & Mobility www.superiorvan.com3414 Interstate DriveEvansville IN 47715812-402-8267866-4990-8267
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RAMP SERVICES
Lifespan Resources (New Albany IN) 812 948-6428 Connect2HelpUnited Way of Central Indiana’s Resource GuidePhone: 211
Senior Resource Guide of Southern Indianahttp://resources.swirca.org/Available in English & SpanishSWIRCA & More Non- profit organization serving seniors, people with disabilities, and their caregivers.16 W. Virginia St.Evansville, IN 47710812-464-7800
SOCIAL SECURITY/MEDICARE/MEDICAID
3700 Blackiston Blvd (47150)http://socialsecurityhop.com/offices/social-security-office-new-albany-in-47150-indiana(800) 772-1213
PERSONAL TRAINERS (with specialized training for PD)
Harley [email protected]’s Gym NewburghParkinson’s Fitness Certified Instructor | Delay the Disease8120 High Pointe DrNewburgh, IN 47630812-490-2627
Nikki Pritchett, ACSM Certified, Personal TrainerStudio on the BlvdIn-home personal training focuses on strength, balance and flexibilityCertified Rock Steady Boxing [email protected]
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ADULT PROTECTIVE SERVICES & ADVOCACY
Clark County Adult Protective501 E Court Ave #215Jeffersonville, IN 47130Criminal Division(812) 285-6364http://www.clarkprosecutor.org/
Partners in Parkinson’swww.parkinsonpartners.org
WEB-BASED BUSINESSES
Free Rider USAwww.freeriderusa.com In-Step Mobility Products, Inc.Walking Aids Designed Specifically for Neurologi-cal Conditionswww.ustep.com1-800-558-7837 LiftWarewww.google.com/liftware(weekdays 6am–5pm PACIFIC TIME)415-894-5438 Luggie Scooterswww.luggiescooters.com877-701-0572 Speak Up for Parkinson’s— mobile apphttps://itunes.apple.com/us/app/speak-up-for-parkinsons/id784117908?mt=8 Guardian Medical Monitoringwww.guardianmedicalmonitoring.com Phone: 800-782-9688
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CREATING A PERSONAL SUPPORT TEAM
No matter where you are in your treatment,it is important to have a Support Team. The following is a recommended list
of a variety of individuals who can assist:
Movement Disorder SpecialistA neurologist who is trained specifically to treat movement disorders, such as Parkinson’s disease. Movement disorder specialists must complete their
residency training in neurology and then complete additional training (a fellowship) in movement disorders
Physician/NeurologistResponsible for directing your care. They are seen as the lead in your treatment program and should be consulted if you have any questions
or concerns
Nurse/CaregiverHelps with specific or daily personal care and needs
Physical TherapistUses specially designed exercises and equipment to help patients regain
or improve their physical abilities
Occupational TherapistHelps regain independence of daily activities
Speech TherapistWorks to improve speaking, swallowing, reading and writing
DietitianSocial Worker /Case Manager
PharmacistChaplain/Spiritual Leader
Psychologist/NeuropsychologistLegal and Financial Planners
Other Tips:Find a Support Group
Access Community Health Networks Join a Clinical Trial
Attend Education Conferences
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LIVE WELL WITH PARKINSON’S DISEASEProviding a healthier and improved quality of life while expanding our legacy of service
(502) 254-3388PARKINSONCENTER.ORG
315 Townepark Circle, Suite 100Louisville, KY 40243
Explore our services
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