September 29, 2021

Living with PD

  • Parkinson’s Disease

    For those with Parkinson’s disease, or disorders that mimic Parkinson’s disease, the University of Michigan offers comprehensive care delivered by an internationally recognized medical team, including neurologists that specialize in Movement Disorders. We treat more than 1,000 Parkinson’s patients each year as well as patients suffering from corticobasal degeneration, dementia with Lewy bodies, multiple system atrophy and progressive supranuclear palsy. Parkinson’s disease affects about one percent of people over the age of 60, and more than one million people in the United States. Parkinson’s usually begins after the age of 40, but younger patients can be affected. It is caused by the deterioration of nerve cells that make a chemical called dopamine. The disease generally presents slowly and progresses gradually over the years. The main signs of Parkinson’s disease are tremor, slowness of movement (called bradykinesia), stiffness (called rigidity), and poor balance. The tremor is a rest tremor, meaning that it is most noticeable when the limb is at rest and improves when the limb is in use. These symptoms are usually mild and barely noticeable in the early stages, but progressively worsen over time. Patients may also have symptoms that are not related to movement, many of which affect mental functioning, mood, senses and the ability to sleep or remain awake. As symptoms worsen, people may have difficulty walking, talking, or performing other tasks. It is important that patients discuss their symptoms with their physicians so that treatment can be started and optimized.


    Parkinson’s Calming Essential Tremor with Deep Brain Stimulation

    After years of troublesome hand tremors, an active retiree finally found relief. Learn about the procedure that helped him regain function. 
     

    .

    Parkinson’s Disease e-Learning Module:

    Improving Hospital Stays for Patients with Parkinson’s Disease Learning Module Kelvin L. Chou, MD, Professor of Neurology and Neurosurgery at the University of Michigan, Co-Director of the STIM (Surgical Therapies Improving Movement) Program, and the Education and Outreach Core Director for the U-M Udall Center of Excellence for Parkinson’s Disease, created and launched an e-learning module Improving Hospital Stays for Patients with Parkinson’s Disease Learning Module. This learning module is educating inpatient RNs, LPNs, pharmacists, house officers, and hospitalists about the specific and unique needs of the hospitalized PD patient.  They will learn to identify medications that can lead to a worsening or exacerbation of symptoms, prolonging the hospital stay, and understand the importance of administering appropriate medications on time, every time, to the hospitalized patient with Parkinson’s disease. It is hoped the knowledge gained from this module will shorten hospitalization stays for patients with PD and provide them with a safer and more pleasant hospital experience.

    .

    Virtual Parkinson Exercise and Movement Classes

    The Michigan Parkinson Foundation is offering Parkinson exercise classes via ZOOM.

    • 10:00 am every day, Monday through Saturday
    • The classes are scheduled through the end of 2021.

    Our exercise programs are evidence based and are taught by physical therapists who specialize in neurological disorders and Yoga instructors who are certified in Adaptive Yoga. For a complete list of class offerings and instructors click here  → (Exercise Schedule Flyer) At the scheduled time,  visit this link: https://parkinsonsmi-org.zoom.us/

    Meeting ID: 813 7303 6837

    Password: MPF2020

    Dial-in by your location: 1 (646) 558 8656

    Meeting ID: 813 7303 6837

    *CLICK HERE TO WATCH PRE-RECORDED Virtual Exercise Sessions 

    .

    Parkinson’s Disease & You Symposium

    The Parkinson’s Disease & You Symposium, which started in 2009, is an all-day annual event that attracts people from throughout Michigan and Ohio, regardless of where they receive care. At the Parkinson’s & You Symposium, you can receive up-to-date information given by leaders in the field and connect with other people and families who are living with the condition. The University of Michigan Udall Center of Excellence for Parkinson’s Disease Research funded the last two years of the Symposium; the U-M Surgical Therapies Improving Movement (STIM) Program funded previous programs. To be notified of future events, please join our email list. 2019 Parkinson’s Disease & You Symposium – 10/4/2019

    The Parkinson’s Disease & You Symposium, which started in 2009, is an all-day annual event that attracts people from throughout Michigan and Ohio, regardless of where they receive care. At the Parkinson’s & You Symposium, you can receive up-to-date information given by leaders in the field and connect with other people and families who are living with the condition. The University of Michigan Udall Center of Excellence for Parkinson’s Disease Research has funded the Symposium since 2015; the U-M Surgical Therapies Improving Movement (STIM) Program funded previous programs. To be notified of future events, please join our email list. You may view the presentations from the 2019 symposium as a playlist or individually by clicking on the video window below. To view the individual videos on YouTube, click on the links below the video window.

     

     Click on a link below to view a video on YouTube:

    . 2018 Parkinson’s Disease & You Symposium – 10/19/18 The annual Parkinson’s disease symposium took place October 19th, 2018. Our speakers were comprised of  University of Michigan Faculty and experts in their fields who eagerly shared their knowledge. Presentations this year included a Parkinson’s overview; adaptive equipment & home modifications; psychiatric symptoms; and alternative therapies (medical marijuana & supplements)

     Dementia: What Now?  Interventions for the Patient and Caregiver After the Diagnosis – 9/27/18 Dr. Roger Albin, Co-Director University of Michigan Udall Center, presented on Dementia Types and Trajectory at the Veterans Affairs Ann Arbor Healthcare System’s CME Program: Dementia: What Now?  Interventions for the Patient and Caregiver After the Diagnosis.  The program was held on September 27, 2018 at the Kensington Hotel in Ann Arbor, Michigan.  This conference was attended by physicians, nurse practitioners, physician assistants, nurses, pharmacists, social workers, and other practitioners taking care of older adults with dementia in the community, hospitals, and nursing facilities.  See Program (link) 2017 Parkinson’s Disease & You Symposium Videos You can view the presentations from the 2017 Symposium as a playlist by clicking on the video window below, or by clicking on the links below the video to view the individual sessions on YouTube.

    Click on the image above to access and manage the playlist for of all 4 videos from this year’s Parkinson’s Disease and You Symposium. Or view the individual videos on YouTube by clicking on the links below.

     

    2016 Parkinson’s Disease & You Symposium Videos You can view the presentations from the 2016 Symposium by clicking on the links below.

    Includes ways for people with Parkinson’s disease to work with researchers on PD’s most pressing issues. 2015 Parkinson’s Disease & You Symposium Videos You can view the presentations from the 2015 Symposium by clicking on the links below.

    . You can also view the 2015 Movement Disorders brochure here. .

    . Multidisciplinary Movement Disorders Clinic

    Patients who come to the Movement Disorders Clinic are seen by a movement disorders specialist, a neurologist who has extra training in evaluating and treating a person with Parkinson’s disease. There are no blood or imaging tests that can confirm Parkinson’s disease, so diagnosis is based on visible signs and symptoms, which are reviewed during a medical history and neurologic examination. Despite the fact that Parkinson’s disease slowly worsens over a number of years, we now have effective medications that act on the dopamine system and allow patients to do well for a significant period of time. One of the best medications for the disease is called levodopa, which gets changed to dopamine in the brain and significantly improves symptoms. Other treatment options include dopamine agonists, COMT inhibitors, and MAO-B inhibitors, all of which help to enhance dopamine transmission in the brain. Early in the disease, medications may work well, but as time goes on patients may find the effects don’t last as long. They will feel slow, stiff, and many will develop dyskinesias or abnormal, involuntary movements. When people start experiencing these symptoms despite taking medications, deep brain stimulation surgery (DBS) is often recommended. DBS involves placing electrodes in precise locations of the brain. The electrodes are connected to a wire that runs underneath the skin to a battery in the chest. When electrical stimulation is delivered to the brain, the tremor improves. It’s like a pacemaker for the brain, instead of the heart. To make an appointment, call 734-764-6831. .

    Cutting Edge Surgical Program

    Our Surgical Therapies Improving Movement (STIM) program includes one of the largest deep brain stimulation centers in the Midwest region. We have a multidisciplinary evaluation program for potential surgical candidates including members from neurology, neurosurgery, neuropsychology, speech pathology, radiology and social work. In addition, we are home to internationally-renowned researchers who are studying the underlying causes of Parkinson’s disease as well as new treatments. For those who qualify for the surgery, neurosurgery works closely with rehabilitation for patients who may need physical, occupational and speech therapy. DBS helps to relieve motor symptoms such as stiffness, improves the ability to move and may also reduce the severity of tremor. And whereas levodopa causes additional dyskinesias over time, DBS has been found to relieve them. Another benefit of DBS is that since electrical stimulation is constantly delivered to the brain​, patients experience an increase in their “on” time – when motor function is good, while “off” times – when motor function is poor, are typically shorter and milder than before surgery.

  • Michigan Parkinson Foundation

    The Michigan Parkinson Foundation has affiliated support groups across the state of Michigan. These groups generally meet on a monthly basis. Support groups provide people with PD and their families the opportunity to learn more about this condition and its management.

    View support groups in your area

    If there are no support groups in your area and you are interested in having one formed, please contact the Michigan Parkinson Foundation at (800) 852-9781.

    .

    Parkinson’s Association of West Michigan Support Group

    Phone: 1-800-617-8711 Here you can find basic PD information as well as information on classes, events calendar and support group meetings in the Grand Rapids, Holland, Montcalm County and Muskegon areas.  They also maintain a library of materials — accessible at meetings or by mail — to help patients and their families learn as much as possible about the disease. .

    Parkinson’s Network North – Serving Northern Michigan

    Phone: 231-947-1946 (Maxine Meach) OR 231-947-7389 (Hettie Molvang)

    Parkinson’s Network North is a non-profit organization based in Traverse City.  Their mission is to empower individuals and families to meet the challenges of living with Parkinson’s Disease through sharing of information, education, personal support, and advocacy for a cure.  They strive to maintain an up-to-date list of available community resources which may be helpful to people with Parkinson’s and their families, and they host an educational forum every summer.

  • National Parkinson Foundation (NPF) Helpline: 1-800-4PD-INFO (1-800-473-4636) The National Parkinson Foundation has excellent educational resources for patients caregivers and professionals alike.  You can search or browse their PD library for books, videos & webcasts, DVD’s, PD-related websites and NPF publications.  Many of the NPF publications can be viewed online or can be mailed to you at low/no cost and some are available for download.  They have developed an excellent and comprehensive series of manuals addressing various aspects of living with Parkinson’s.  They also have a newsletter which you can sign up to receive electronically or through the mail. Parkinson’s Disease Foundation (PDF) Helpline:  1-800-457-6676 The Parkinson’s Disease Foundation has numerous educational/informational publications that can be ordered free of charge.  They have excellent resources for learning about and living with PD including an informational packet geared towards “newly diagnosed”. They have regular online seminars on PD related topics, as well as user-friendly, printable fact sheets on various topics.  Their newsletter is available online or you can sign up to receive electronic or print copies.  They also have a comprehensive guide that includes over 650 community resources throughout the US and around the world.  It is available in print and is searchable online. National Institute of Neurological Disorders and Stroke The NINDS website contains extensive information about neurological disorders including Parkinson’s disease.  Disease-specific information as well as information about research is available on the site.  Also included is an extensive list of government resources. Michigan Resources:

    Research Website:

    Resource Websites:

    . Young Onset Resource:

    . Parkinson Plus Organizations:

    . Additional Resources:

    . Online Parkinson Resources:

     

  • Join a Study

    Now is the time to join our research team. Research participation is a generous gift – a gift that can be shared with future generations as we pave the way to new discoveries in treatment and prevention. Research participation contributes to the discovery of new ways to diagnose, treat and support people with Parkinson’s disease.

    If you are interested in joining a particular study, please contact the study coordinator listed.

    MHealth Research allows patients to learn about some of our current research studies. Just type in a diagnosis in the search box (for example, Parkinson’s disease) and then the list of studies that are currently using this site will pop-up.

    For a complete list of research studies, see below:

     

    Parkinson’s Disease Clinical Research Studies

     

    The Thalamus in Parkinson Disease

    Objective: To understand the role of thalamus dysfunction in Parkinson disease.  This study involves brain imaging studies of important brain chemical messengers, and careful characterization of motor and cognitive functions.

    Inclusion Criteria:

    • Age 45 and above, Male or Female.
    • PD diagnosis (with or without mild cognitive impairment).
    • All PD subjects will be required to have nigrostriatal dopaminergic denervation as demonstrated by PET scan.

     

    Exclusion Criteria:

    • Presence of significant dementia.
    • Disorders which may resemble PD, such as dementia with Lewy bodies, vascular dementia, normal pressure hydrocephalus, multiple system atrophy, corticobasal ganglionic degeneration, or toxic causes of parkinsonism.
    • Subjects on neuroleptic (except for low dose quetiapine 25-50 mg/d), anticholinergic (trihexiphenidyl, benztropine), cholinesterase inhibitors. Subjects with prior exposure to disallowed medications may be eligible if there has been an interval of greater than 2 months and/or 5 times their plasma half-life off these medications.
    • Evidence of a large vessel stroke in a clinically relevant or mass lesion on structural brain imaging.
    • Participants in whom magnetic resonance imaging (MRI) is contraindicated including, but not limited to, those with a pacemaker, presence of metallic fragments near the eyes or spinal cord, or cochlear implant.
    • Severe claustrophobia.
    • Subjects limited by previous participation in research procedures involving radiation. Pregnancy (test within 48 hours of each PET session) or breastfeeding.
    • History of deep brain stimulation surgery.
    • Subjects with primary ophthalmological disorders, such as glaucoma, resulting in poor vision (corrected vision OU < 0.2). 

    .

    Coordinator:  Jacqueline Caswell: jlcaswel@med.umich.edu

     

    NLY-01-PD-1 (PI: Chou)

    Objective: To evaluate the efficacy, safety, and tolerability of NLY01 in early-stage PD. The study will last 36 weeks with 10 visits.

    Inclusion Criteria:

    • 30-80 years old
    • Parkinson’s Disease, Hoehn and Yahr stage <2.5
    • MoCA >26
    • Treatment naive

    .

    Exclusion:

    • Diagnosis of secondary or atypical Parkinsonism
    • Onset of any Parkinsonian motor sign or symptom >5 years before screening
    • Previous surgical procedure for PD
    • Past treatment with dopaminergic agonists or antagonists or monoamine oxidase-B inhibitors for more than 28 days
    • Active major depression, BDI-II score of >19
    • HX of thyroid malignancy or pancreatitis
    • Current dx of T1D or T2D
    • Intolerance to DaTscan

    .

    Coordinator: Teresa Scerbak tescerba@med.umich.ed and Angela Stovall astovall@med.umich.edu

     

    ENLITE-PD (PI: Wyant)

    Randomized, Phase II, parallel-group, placebo-controlled, dose-selection clinical trial of Light therapy in patients with Parkinson’s disease.

    Objective: Primary aim to determine if bright-white light therapy improves sleep in Parkinson’s disease.

    Inclusion Criteria:

    • Dx iPD with H&Y 2-4
    • Score of 2+ on the Sleep Problems question of the MDS-UPDRS (2 = Sleep problems usually cause some difficulties getting a full night of sleep)
    • Willingness to wear actigraphy and complete daily sleep logs.

    .

    Exclusion Criteria:

    • Inadequately treated OSA
    •  Symptomatic RLS
    • MMSE < 25
    •  Moderate depression
    •  Current untreated hallucinations or psychosis
    • Antidepressants, hypno-sedative drugs unless stable for 60 days prior to screening
    • Significant eye trauma or disease
    • Use of a photosensitizing drug (amiodarone, tetracycline, St. John’s wort, etc) within 30 days of screening

    .

    Coordinator: Amanda Rasnake arasnake@med.umich.edu  

    .

    PPMI 2.0 (PI: Chou)

    Objective: to continue to obtain information from people with and without Parkinson disease so that researchers may better understand how PD progresses, in order to inform better treatments.  Study procedures include DaTscan, MRI, Lumbar puncture and skin biopsy.

    Inclusion Criteria:

    • 30+ years old
    • PD diagnosed w/in 2 years
    • Not expected to require PD medication within at least 6 months from Baseline
    • Must have at least two of the following: resting tremor, bradykinesia, rigidity (must have either resting tremor or bradykinesia); OR either asymmetric resting tremor or asymmetric bradykinesia
    • Hoehn and Yahr stage I or II
    • Confirmation that participant is eligible based on Screening DaTscan imaging
    • Treatment naive

    .

    Exclusion:

    • Currently taking levodopa, dopamine agonists, MAO-B inhibitors, amantadine or another PD medication.
    • Has taken levodopa, dopamine agonists, MAO-B inhibitors or amantadine within 60 days of Baseline visit.
    • Received any of the following drugs: dopamine receptor blockers, metoclopramide and reserpine within 6 months of Screening visit.
    • A clinical diagnosis of dementia
    • Previously obtained MRI scan with evidence of clinically significant neurological disorder
    • Current treatment with anticoagulants that might preclude safe completion of the lumbar puncture.

    .

    Coordinator:, Frank Ferrari frankfer@med.umich.edu; Teresa Scerbak tescerba@med.umich.edu; Angela Stovall astovall@med.umich.edu

     

    Vigor and the LDR in Parkinson Disease (PI: Albin)

    Objective: To explore how levodopa treatment in PD produces the Long Duration Response (LDR).

    Inclusion Criteria:

    • PD diagnosis
    • Previously untreated
    • H&Y I or II
    • Age >45 and <81

    .

    Exclusion Criteria:

    • Presence of other neurologic disease or findings on examination
    • Cognitive impairment: MoCA score of <24
    • Depression: GDS score of >5
    • Use of dopamine agonists or stimulants
    • Evidence of a stroke or mass lesion on prior structural brain imaging (MRI or CT)
    • Evidence of any confounding medical or psychiatric problem that would preclude task participation

    .

    Procedures:

    • Demographic Data
    • Clinical Rating Scales: UPDRS, PD-CRS, GDS, Lille Apathy Scale, etc.
    • Simple Tests of Motor Function, Motivational Function

    .

    Coordinator: Teresa Scerbak tescerba@med.umich.edu 

     

    Modulation of GABA-A Receptors and Axial Impairment in Parkinson disease (PI:  Bohnen)

    Objective:  To assess the effect of GABA-A receptor modulating drug (flumazenil) on axial motor impairments in Parkinson Disease.

    Inclusion Criteria:

    • Parkinson’s disease, Hoen and Yahr stages 2-4
    • Age 50 years or older.
    • Absence of dementia

    .

    Exclusion Criteria:

    • Subjects on benzodiazepine, GABAB-ergic medications (baclofen, tizanidine), neuroleptic, anticholinergic (trihexiphenidyl, benztropine), or cholinesterase inhibitor drugs.
    • Evidence of a mass lesion on structural brain imaging (MRI).
    • Participants in whom MRI is contraindicated
    • History of seizures
    • History of suicide attempt
    • Claustrophobia, severe anxiety
    • Other criteria specific to flumazenil arm

    .

    Coordinator: Ashley Pogue (poguea@med.umich.edu)

     

    Citalopram in PD (PI: Kotagal)

    Objective: To evaluate the ability of citalopram to alter progression of visuospatial cognitive decline and amyloid-beta plaque deposition in Parkinson disease. A subject will be enrolled for 28 months and will have study visits approximately every 3 months.

    Inclusion Criteria:

    • 65 years of age and older
    • Diagnosis of Parkinson’s Disease, Hoehn and Yahr stage 2-3
    • No current dementia
    • Not currently on an SSRI, SNRI, or TCA

    .

    Exclusion:

    • Active Depression (GDS of 10/30 or greater)
    • Prolonged QTc interval on EKG
    • Contraindications for Brain MRI or PET imaging

    .

    Coordinators: Cate Lewis cathlewi@med.umich.edu; Emily Herreshoff egalopin@med.umich.edu

     

    Web-based Automated Imaging Differentiation of Parkinsonism (PSG/U01 Site-PI: Bohnen)

    Objective: To evaluate diagnostic performance of free water MR imaging to help with the differential diagnosis of atypical parkinsonism.

    Inclusion Criteria:

    • Possible/probable MSA-P
    • Possible probable PSP

    .

    Exclusion:

    • Contra-indication to MRI
    • Claustrophobia
    • Pregnant or nursing women

    .

    Coordinator: Liv Dickinson < lidickin@med.umich.edu

     

    For Parkinson’s Disease/Dementia with Lewy Bodies

     

    Lewy Body Dementia Biomarkers (PI: Frey)

    Objective: To identify protein accumulations in the brain in patients with PD-related dementia using brain imaging (PET and MRI). The study is also part of the Parkinson’s Disease Biomarker Program (PDBP) and will involve annual MDS-UPDRS exams, cognitive testing, and the collection of biofluid samples that will become part of a national data repository. Participation lasts up to 5 years.

    Inclusion Criteria:

    • Age 55 years and older.
    • Dementia (DSM- defined cognitive impairment that impairs working, social interactions or ADLs)
    • MMSE > 16

    /

    Diagnoses

    • PDD: dementia with established PD diagnosis using UKPDSBRC criteria
    • Probable DLB: dementia with twoof: cognitive fluctuations, visual hallucinations, parkinsonism, abnormal DATscan, RBD
    • Possible DLB: dementia with any one of the above features

    .

    Exclusion Criteria:

    • Significant neurological or psychiatric conditions, other than PDD or DLB.
    • Contraindication to MRI
    • Neuroleptics other than quetiapine

    .

    Coordinator: Ashley Pogue poguea@med.umich.edu

     

    For Huntington’s Disease

     

    CT-AMT-130-01 (Dayalu)

    A Phase I/II, Randomized, Double-blind, Sham Control Study to Explore Safety, Tolerability, and Efficacy Signals of Multiple Ascending Doses of Striatally-Administered rAAV5-miHTT Total Huntingtin Gene (HTT) Lowering Therapy (AMT-130) in Early Manifest Huntington Disease

    Objective: demonstrate safety and tolerability of AMT-130 when delivered directly to the brain by evaluating changes in safety parameters out to 5 years post AMT-130 treatment in genetically confirmed, early manifest HD patients.

    Inclusion Criteria:

    • 25-65 years of age
    • Clinical diagnosis of early manifest HD
    • Total Functional Capacity Score (TFC) 9-13
    • Diagnosis Confidence Level (DCL) 4 or
    • DCL of 3 with either a positive (“Yes”) response to the UHDRS Question 80 (multidimensional manifest diagnosis on motor, cognitive, behavioral, functional) or DSM5 criteria for cognitive disorder
    • CAG repeat ≥ 40
    • HD con meds stable for 3 months prior to screening
    • Putamen volume of ≥2.5 cm3 (per side) and a caudate volume of ≥2.0 cm3 (per side) on MRI

    .

    Exclusion Criteria:

    • Suicidal risk
    • Contraindication to MRI or LP
    • Malignancy in past 5 years
    • History of gene therapy
    • Significant neurologic comorbid disorder or brain and spinal pathology that may interfere with the surgical delivery of AMT-130

    .

    Coordinator: Angela Stovall astovall@med.umich.edu