December 21, 2016

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.
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    New 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.

    New Parkinson’s Movement & Dance Class

    Join us for this six week class exploring music and movement in enjoyable, creative, and stimulating ways.

    Modeled after the Mark Morris Dance Group and the Brooklyn Parkinson Group’s “Dance for PD®” program

    Appropriate for all levels of PD and no dance experience required.

    Care partners welcome!
    Wednesday afternoons, 3-4pm
    September 27 – November 1

    Location: Turner Senior Resource Center (2401 Plymouth Rd, Ann Arbor, MI 48105)

    Fee: $30 per person; $50 per couple/pair*
    Support for this patient education activity provided by the Movement Disorders
    Group & Udall Center of Excellence for Parkinson’s Disease Research

    Call (734) 998-9353 for more info or to register.

    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.

    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.

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

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    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.

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    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:

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    Young Onset Resource:

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    Parkinson Plus Organizations:

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    Additional 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.

    See enrolling studies below:

    Cholinergic Mechanisms of Gait Dysfunction in Parkinson’s Disease (Udall)

    Principal Investigator: Nicolaas Bohnen, MD, PhD, University of Michigan

    Project Description:
    Balance and gait problems cause severe impairments for people with Parkinson’s disease and significantly affect their quality of life. Several changes occur in the brains of Parkinson’s disease patients. The hallmark change is a loss of a neurotransmitter (“chemical messenger” between brain cells) called dopamine. To alleviate Parkinson’s disease symptoms doctors prescribe dopamine replacement therapy, for example Sinemet (levodopa). Although effective for some of the symptoms, it typically does not sufficiently alleviate balance and gait problems. This study focuses on other changes in the brain that occur in Parkinson’s disease that may contribute to balance and gait problems. In particular we will be looking at another neurotransmitter called acetylcholine. In some Parkinson’s disease patients we see a loss of acetylcholine in the brain. In previous studies we have shown that this loss of acetylcholine is related to impaired balance and gait function in Parkinson’s disease. In this study we will take a closer look at this finding.

    Participant Criteria: 

    1. Age 50 and above (Male/Female).
    2. PD diagnosis (with or without mild cognitive impairment; MCI) will follow the UK Parkinson’s Disease Society Brain Bank Research Center (UKPDSBRC) clinical diagnostic criteria for PD (47), consistent with the typical nigrostriatal denervation pattern on VMAT2. Absence of significant dementia confirmed by neuropsychological testing. Modified Hoehn and Yahr stages 1-4 (48, 49).
    3. PSP diagnosis will follow the NINDS-PSP clinical diagnostic criteria (50, 51).
    4. All PD subjects will be required to have nigrostriatal dopaminergic denervation as demonstrated by [11C]DTBZ PET imaging (52, 53). Subjects with Parkinsonism and absence of this PD-typical pattern will be re-categorized .

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    Contact: 
    Christine Minderovic, BS cmindero@umich.edu, 734-998- 8420

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    Other Parkinson’s Disease Clinical Research Studies

    SURE-PD3: A Randomized, Double-blind, Placebo-controlled Trial of Urate Elevating Inosine Treatment to Slow Clinical Decline in Early Parkinson’s Disease

    Principal Investigator: Kelvin Chou, MD, University of Michigan

    Project Description:
    To objective of the study is to find out whether a treatment (inosine) that raises urate levels can slow the rate of worsening in PD.  There is evidence that increased urate levels can predict both a lower risk of developing PD and a slower rate of its worsening over time.

    Participant Criteria:
    Inclusion criteria:

    • Diagnosed with idiopathic PD within the last three years
    • Currently not on ANY anti-parkinson therapy (including amantadine and trihexyphenidyl) other than a monoamine oxidase-B inhibitor

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    Exclusion criteria:

    • History of gout,  urolithiasis, myocardial infarction, stroke, symptomatic congestive heart failure, or severe COPD

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    Contact:
    Angela Stovall astovall@med.umich.edu

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    Serotonin and Amyloidopathy

    Principal Investigator: Vikas Kotagal, MD and Roger Albin, MD, University of Michigan

    Project Description:
    The purpose of this study is to determine if changes in brain serotonin affects the accumulation of amyloid in the brain. The investigators will use brain imaging methods to measure the amount of serotonin and amyloid in the brain of individuals with Parkinson’s Disease (PD) and otherwise healthy older people. PD participants will undergo repeat brain imaging to assess amyloid accumulation two years after their first brain imaging session. All participants will undergo examinations to assess their motor function, and asked questions to assess their mood and thinking.

    Participant Criteria:
    Males and females ages 45 years and older and are eligible to participate in the study. Healthy older individuals (ages 60-80) without neurologic problems are eligible to participate.

    Contact: Ashley Szpara, BA aszpara@med.umich.edu, 734-232- 2415

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    Cardiovascular Risk Factors in PD

    Principal Investigator: Vikas Kotagal, MD

    Project Description:
    This is a study to explore the role of common cardiovascular risk factors on the development of clinical impairment in PD. This prospective observational study will involve clinical and MRI assessments at baseline and at 2 year follow-up in a cohort of 50 Veterans with PD recruited from VA Movement Disorders clinic.

    Participant Criteria:
    Inclusion Criteria:

    • Diagnosed with idiopathic Parkinson’s disease as defined by the UK Brain Bank criteria
    • Hoehn and Yahr stage 3 or less
    • Age ≥50
    • No contraindications for undergoing an MRI

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    Contact
    : Ashley Szpara, BA aszpara@med.umich.edu, 734-232- 2415

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    For Parkinson’s Disease Dementia/ Dementia With Lewy Bodies

    A Phase 2, double-blind, randomized, placebo-controlled crossover study evaluating the effect of RVT-101 on gait and balance in subjects with Alzheimer’s Disease, Dementia with Lewy Bodies, or Parkinson’s Disease Dementia

    Principal Investigator: Nicolaas Bohnen, MD, PhD, University of Michigan

    Project Description:
    A Phase 2, double-blind, randomized, placebo-controlled crossover study evaluating the effect of RVT-101 on gait and balance in subjects with Alzheimer’s Disease, Dementia with Lewy Bodies, or Parkinson’s Disease Dementia. The objective of this study is to assess the effect of RVT-101 versus placebo on gait speed, a quantitative measure of functional mobility, evaluated under normal and dual-task walking conditions on an electronic walkway system after 2 weeks of treatment.

    Principal Investigator: Nicolaas Bohnen, MD, PhD, University of Michigan

    Participant Criteria:
    Inclusion Criteria:

    • Age 50-89 with PDD or DLB
    • Must be taking cholinesterase inhibitor
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    Exclusion Criteria:

    • History and/or evidence of any other disorder that could be interpreted as a cause of dementia.
    • History of significant psychiatric illness

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    Contact:
     Christine Minderovic, BS cmindero@umich.edu, 734-998- 8420

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    For Huntington’s Disease

    SIGNAL

    Principal Investigator: Praveen Dayalu, MD, University of Michigan

    Project Description:
    To evaluate safety and tolerability of study drug VX15/2503 vs placebo and its effect on SEMA4D with 18 monthly infusions.

    Participant Criteria:
    Inclusion Criteria: 

    • Dx of HD with documentation of ≥36 CAG repeat
    • Early manifest motor symptoms (TFC ≥ 11). Subject must have been given a clinical diagnosis of HD.

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    Contact:
      Elizabeth Sullivan (elizsull@med.umich.edu)

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    HDEnroll

    Principal Investigators: Noelle Carlozzi, PhD; Praveen Dayalu, MD, University of Michigan

    Project Description:
    An open-ended, prospective observational multi-center multi-national cohort study with a goal of enrolling approximately one-third of the HD affected population in each study region (North America, Latin America, Europe, Asia, Australia and New Zealand). Participants will be asked to participate in as many annual study visits as possible. Study procedures include annual cognitive, behavioral and motor assessments and annual biospecimen collection (blood and DNA).

    Participant Criteria:

    We are looking for 2 categories of participants:

    1. Individuals who carry the HD gene expansion mutation (with or without clinical features)
    2. Individuals who do not carry the HD gene expansion mutation (family and community controls)

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    Contact:
      Elizabeth Sullivan (elizsull@med.umich.edu)

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    For Multiple System Atrophy

    PET Imaging Study of Neurochemical and Autonomic Disorders in Multiple System Atrophy

    Principal Investigator: Praveen Dayalu, MD, University of Michigan

    Project Descripton:
    Multiple system atrophy (MSA) is a disorder of the nervous system of unclear cause. In MSA there is degeneration (progressive loss) of nerve cells in several brain and spinal cord regions. The result is a variety of symptoms, from physical (parkinsonism, ataxia, incoordination, falls, slowness) to autonomic (fainting, bladder incontinence, sexual dysfunction) to sleep problems (dream enactment, sleep apnea).

    This research aims to help us better understand the patterns and timing of nerve degeneration relatively early in the disease, and how this affects symptoms and progression. For instance:

    1. Does MSA affect certain nerves that stimulate heart pumping? If so, does the severity of loss of heart nerves affect disease progression and survival?
    2. It is thought that MSA does not affect memory and thinking much, unlike other diseases (such as Parkinson’s). Is this accurate? Is there loss of nerves that transmit acetylcholine (a neurochemical important in mental functioning)?
    3. What can we learn about mood and sleep in MSA, through visualizing the serotonin system in the brain? How does this relate to symptoms that subjects report in these often underappreciated areas?

    To answer these and other questions, investigators will take images of specific nerves in the brain and heart using Positron Emission Tomography (PET) scans. Such imaging gives us information that cannot be obtained from MRIs and CT scans. We will measure the levels of several nerve cell types: serotonin, acetylcholine, and norepinephrine. Subjects will also have many standardized assessments including quality-of-life and symptom assessments, neurological examination, autonomic assessments, neuropsychological assessments, coordination tests, and even assessments of vision and sense of smell. By pooling these results from many MSA patients, and comparing with other diseases (such as Parkinson’s disease) we hope to gain a better understanding of what is happening early in MSA. Such knowledge could be very valuable in future efforts to develop better therapies in this rare disease.

    Participant Criteria:
    Inclusion Criteria:

    • Participants aged 30-80 years old with a diagnosis of Possible or Probable MSA of the parkinsonian subtype (MSA-P) or cerebellar subtype (MSA-C)
    • Participants who are less than 4 years from the time of documented MSA diagnosis
    • Participants who are willing and able to give informed consent
    • “Normal” cognition as assessed by Mini Mental State Examination
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    Contact:  Stephen Campbell, MSW, stepcamp@umich.edu 734-763-2361
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    For Progressive Supranuclear Palsy

    Udall Center – Cholinergic Mechanisms of Gait Dysfunction in Parkinson’s Disease

    Principal Investigators: Nicolaas Bohnen, MD, PhD, Roger Albin, MD, William Dauer, MD

    Project Description:
    To determine the role of cholinergic deficits in gait and balance dysfunction in Parkinsonism

    Criteria:
    Inclusion Criteria:

    • Non-demented PSP subjects age 50 and above (M/F).

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    Exclusion Criteria:

    • Use of drugs with cholinomimetic or anti-cholinergic effects.

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    Contact:
      Christine Minderovic, BS cmindero@umich.edu, 734-998- 8420