PARKINSON S AWARENESS & SUPPORT ASSOCIATION of the TRI-STATE (PASATS)

Transcription

1 PARKINSON S AWARENESS & SUPPORT ASSOCIATION of the TRI-STATE (PASATS) The Red Tulips by Nikki Pritchett Resource Guide

2 NATIONAL SUPPORT National Parkinson s Disease Organizations Michael J Fox Foundation Parkinson Foundation PD Help Line Davis Phinney Foundation

3 Local Support Groups PASATS- Parkinson s Awareness and Support Association of the Tri-State Meets monthly, check website for details Care Partners Support Group- Meets bi-monthly, check website for details LOCAL SUPPORT 3

4 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. PARKINSON S DISEASE 101 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 INTRODUCTION 4

5 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 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 SYMPTOMS OF PD Reduced facial expression mask-like face due to bradykinesia Speech and swallowing problems Other Treatment-Related Symptoms 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 5

6 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 6

7 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. 7

8 COMMON PD MEDS This list was compiled using information from The Parkinson s Disease Foundation s Parkinson s Disease Q & A, (Sixth Edition, 2012) and its website For more information about medicines, contact your physician. Class Medication (common name) Function Side Effects Levodopa Carbidopa/Levodopa(Sinemet ) Carbidopa/Levodopa controlled release (Sinemet CR ) Carbidopa/Levodpa orally disintegrating tablet (Parcopa ) Carbidopa/Levodopa/Entacapone (Stalevo ) Converts into dopamine to manage major symptoms Low blood pressure, nausea and vomiting, dyskinesia, dry mouth, dizziness Dopamine Agonists Apomorphine (Apokyn ) Bromocriptine (Parlodel ) Pramipexole (Mirapex ) Pramipexole dihydrochloride extendedrelease (Mirapex ER ) Ropinirole (Requip ) Ropinirole extended-release tablets (Requip XL) Rotigotine transdermal system (Neupro ) 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 COMT (Catechol-O-Methyl Transferase) Inhibitors Entacapone (Comtan ) Tolcapone (Tasmar ) Helps extend effect of levodopa Abdominal pain, back pain, constipation, nausea, diarrhea, blood in urine, liver failure 8

9 COMMON PD MEDS As 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 Side Effects MAO-B (Monoamine oxidase) Inhibitors Rasagiline (Azilect ) Selegiline or deprenyl (Eldepryl ) Seleginilie HCI orally disintegrating tablet (Zelapar ) Blocks enzyme in the brain that breaks down levodopa. Dizziness, nausea, pain, head-ache, insomnia, rhinitis, dyskinesia, back pain, stomatitis, dyspepsia Anticholinergics Benztropine mesylate (Cogentin ) Procyclidine (not in US) Trihexyphenidyl (Artane ) Helps with tremors and dystonia Blurred vision, dry mouth, constipation and urinary retention 9

10 EXERCISE Ace CARE University of Evansville Physical Therapy Program physicaltherapy/acecare.cfm Delay the Disease Classes offered at several Evansville locations (812) Find the locations at Parkinson s Exercise Class HealthSouth Deaconess Rehab Hospital 4100 Covert Ave Evansville IN Healthsouth-Parkinson-s-Exercise-Class/Parkinson-s-Disease-Exercise-Class-(13) Rock Steady Boxing Evansville IN YMCA Downtown 222 NW 6th St Evansville, IN For other locations 10

11 Deaconess Pelvic Health & Wellness Center 4199 Gateway Blvd. Newburgh, IN Services/Pelvic-Health-Wellness-Center HealthSouth Deaconess Rehabilitation Hospital 4100 Covert Ave. Evansville, IN rehabilitation-programs LSVT Big & LOUD provider Progressive Health Orthopedic Dr. Newburgh, IN LSVT Big provider ProRehab (east side office) 415 Crosslake Drive Suite B Evansville, IN Outpatient & In-Home Services available LSVT Big provider Rehab for Life 1449 Kimber Lane, Suite 103A Evansville, IN Transportation available St. Vincent Rehabilitation Institute Outpatient Rehab - Washington Square Mall 1144 Washington Square Evansville, IN LSVT Big & LOUD provider NOTE: Listing of all LSVT Big & LOUD providers go to AND SPEECH THERAPY PHYSICAL, OCCUPATIONAL, 11

12 Locally Owned Parmacies Paul s Pharmacy East Location 1225 Washington Square Evansville, IN Pharmaceutical Patient Assistant Program Needy Meds Help Line Partnership for Prescription Assistance Patient Access Network Foundation (PANF) RX Assistance Select Care Benefits Network

13 Restorative Therapy Deep Brain Stimulation (DBS) Educational Classes St. Vincent Evansville Gift Room 3700 Washington Ave Evansville, IN Aaron Stults Motion Studio 3211 Grant Line Rd. #13 (47150) Durable Medical Equipment Advanced Medical Equipment Services 1741 Oak Hill Road Evansville IN Deaconess Home Medical Equipment Easter Seals Rehabilitation Center Provides assistive technology services and driving assessments U-Step walkers HLS Health + Wellness 1330 N. Green River Road Evansville IN St. Vincent Evansville Medical Equipment

14 ORGANIZATIONS AND SERVICES CHARITABLE ORGANIZATIONS Melvin Weinstein s Parkinson Foundation Assist PD patients with devices and medications mwpfassistance@verizon.net HOME HEALTH SERVICES Deaconess Hospital Hospice/Home-Health-Care Home Instead Senior Care Horizons Home Care Senior Helpers Specialty Home Health Care St. Vincent Evansville Green Valley Care Center private nursing home accepts Medicare & Medicaid 3118 Green Valley Rd, New Albany (47150) (812)

15 PALLIATIVE CARE SERVICE Deaconess Hospital Palliative-Care VETERAN SERVICES Evansville Health Care Center 6211 E. Waterford Blvd. Evansville, IN St. Vincent Hospital AseraCare Hospice 1401 Professional Blvd. #201 Evansville, IN HOSPITALS & DOCTORS Southern Indiana Rehab Hospital Jen Robinson, PT 3104 Blackiston Blvd. New Albany, IN Wellstone Regional Hospital 2700 Vissing Park Rd, Jeffersonville, IN LEGAL & FINANCIAL Schad & Schad Trial Lawyers 223 E Spring St (47150)

16 TRANSPORTATION & MOBILITY METS -Metropolitan Evansville Transit System (City Bus) METS MOBILITY For those 65 years or older or those with a documented disability that limits the use of the METS regular route system Superior Van & Mobility Interstate Drive Evansville IN DISABLED PARKING PERMITS City of New Albany (IN) HANDICAPPED PARKING PERMITS INDIANA Motor Vehicle & Boats Disabled Parking Obtain form from Clerk s office (available online) Form needs physician s signature and must be notarized Small fee 16

17 RAMP SERVICES Lifespan Resources (New Albany IN) Connect2Help United Way of Central Indiana s Resource Guide Phone: 211 Senior Resource Guide of Southern Indiana Available in English & Spanish SWIRCA & More Non- profit organization serving seniors, people with disabilities, and their caregivers. 16 W. Virginia St. Evansville, IN SOCIAL SECURITY/MEDICARE/ MEDICAID 3700 Blackiston Blvd (47150) (800) PERSONAL TRAINERS (with specialized training for PD) Harley Wilson harleywilson@bobsgym.com Bob s Gym Newburgh Parkinson s Fitness Certified Instructor Delay the Disease 8120 High Pointe Dr Newburgh, IN Nikki Pritchett, ACSM Certified, Personal Trainer Studio on the Blvd In-home personal training focuses on strength, balance and flexibility Certified Rock Steady Boxing Coach studioontheblvd@gmail.com ORGANIZATIONS OTHER 17

18 ADULT PROTECTIVE SERVICES & ADVOCACY Clark County Adult Protective 501 E Court Ave #215 Jeffersonville, IN Criminal Division (812) Partners in Parkinson s WEB-BASED BUSINESSES Free Rider USA In-Step Mobility Products, Inc. Walking Aids Designed Specifically for Neurological Conditions LiftWare (weekdays 6am 5pm PACIFIC TIME) Luggie Scooters Speak Up for Parkinson s mobile app Guardian Medical Monitoring Phone:

19 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 Specialist A 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/Neurologist Responsible 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/Caregiver Helps with specific or daily personal care and needs Physical Therapist Uses specially designed exercises and equipment to help patients regain or improve their physical abilities Occupational Therapist Helps regain independence of daily activities Speech Therapist Works to improve speaking, swallowing, reading and writing Dietitian Social Worker /Case Manager Pharmacist Chaplain/Spiritual Leader Psychologist/Neuropsychologist Legal and Financial Planners Other Tips: Find a Support Group Access Community Health Networks Join a Clinical Trial Attend Education Conferences 19

20 LIVE WELL WITH PARKINSON S DISEASE Providing a healthier and improved quality of life while expanding our legacy of service Explore our services Access to care Education Advocacy Social assistance Support groups Exercise Classes (502) PARKINSONCENTER.ORG info@parkinsoncenter.org 315 Townepark Circle, Suite 100 Louisville, KY 40243