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Michigan Parkinson Foundation's 13th Annual "I Gave My Sole for Parkinson's" Walk-a-thons and 5K Runs will be held Saturday, May 16 at Lakeview High School in St. Clair Shores, and Sunday, May 17 at Northville High School.  On line registration is now open.

Join us for these fabulous events - come to one or both!  Bring family and friends!  Help to raise funds for MPF's programs and services, and have fun doing it!

Click on www.parkinsonsmi.org -   Fundraising/Walkathons and select your options -  Eastside, Westside, individual or team! 

Download Brochure


Parkinsons LOGO 2color

PUSHUPS FOR PARKINSON'S: A Fun & Friendly Challenge to Flex Some Muscle for Parkinson's

Have you heard of the ALS Ice Bucket Challenge?  Now is your chance to participate in a similar challenge to benefit people with Parkinson's. Join  Michigan Parkinson Foundation and the other Alliance of Independent Regional Parkinson Organizations (AIRPO) members across the nation and take the Cardel Homes Push-ups 4 Parkinson's Challenge kicking off on May 1! Created by Cardel Homes in Colorado in partnership with the Parkinson Association of the Rockies, this challenge is designed to encourage creative and fun online videos to help raise awareness for Parkinson's, as well as generate crucial funding for the programs and services of each participating Parkinson's support organization.

 It's as easy as 1, 2, 3... Video | Donate | Nominate

  1. Video yourself doing any kind of push-ups including modified push-ups, air push-ups, or pushing up off a chair - anything is acceptable.  The more innovative the better!
  2. In your video, nominate specific friends to donate and take the Push-ups 4 Parkinson's Challenge.
  3. Upload your video to your Facebook page, tagging the friends you challenged and using the hashtag #pushups4parkinsons.
  4. Go to www.pushups4parkinsons.com, click on the Michigan Parkinson Foundation  link, and make a donation.
  5. Encourage your community groups to get involved - schools, churches, fitness groups, companies, etc.

View Video           View Pushups 4 Parkinson's Instructional PDF

 

For more information about Pushups for Parkinson's, visit: www.Pushups4Parkinsons.com

 

(Article credited to HAPS Happening, May 2015)


Generation Care will hold it's 5th annual Pedaling for Parkinson's Ride
                 June 7, 2015    1 pm start time
                 Where:  Heritage Landing, Muskegon MI
                 Registration starts at noon
                $20 donation (shirt included)
     Visit www.generationcare.org
Join us for a Zumba4u at 12:30 pm and LSVT BIG (c) Therapy Demo

 


I Gave My Sole for Parkinson's Walk-a-thon and 5K Run - Lansing Area
Date:  Saturday, August 8, 2015    Event will start at 10:30 am
Okemos High School 2800 Jolly Road, Okemos MI 48864 - - see brochure for details

 

NOTE TIME CHANGE FOR KALAMAZOO WALK-A-THON TO 9 AM START!!!!!

I Gave My Sole for Parkinson's Walk-a-thon - Kalamazoo Area
Date:  Sunday, August 9, 2015   NOTE:  TIME CHANGE  9:00 am start Celery Flats Historical Area
7335 Garden Lane, Portage MI 49002   --- see brochure for details


Many of you may have heard about Dance for Parkinson's, which has been developed by the Mark Morris Dance Company in New York.  Several programs are being started in the southeast Michigan area by dance professionals who have been trained by this company.

New Classes:

Bloomfield Township:  Dance for Parkinson's
Weekly for 6 weeks, beginning Tuesday, March 12 - April 15 and April 23 - May 28 ,  at 11:30 am
followed by an optional 1/2 hour of socializing in the Bloomfield Senior Center Cafe
6 classes for $30 for Bloomfield Township residents;  additional $2 per class for others.
No charge for caregivers, spouses.  Scholarships are available (call  at 248-755-7431)
                              Bloomfield Township Senior Center
                              4315 Andover, Bloomfield Township MI 48302
                              (248)723-3500;   seniorservices@bloomfieldtwp.org

Farmington Hills:  MovingThru - Parkinson's and Dance
Weekly for 6 weeks:  Call for dates
$10 per person (no charge for caregivers, spouses).  Class limited.
Contact Terrye J. Mock (248)505-3951
                           Christina's Adult Ballet & More...Integrating Mood and Body Experiences
                           31531 W. 13 Mile Road, Farmington Hills MI 48334

Rochester: Dance for Parkinson's, hosted by Take Root 2015 schedule
Sunday, June 21:  2-3:15 pm    New schedule to be posted
No fee, but donations are accepted.
Contact:  takerootdance@gmail.com   or Nancy Knitter (248)852-8464 to register.
                         Oakland University - Varner Hall, Dance Studio 132
                         2200 N. Squirrel Road, Rochester MI 483009

Ann Arbor:  Parkinson's Movement & Dance Class
May 2 - June 13 , 2015  (No class May 23)
$30 per person/$50 per couple (scholarships available)
Pre-registration required:  (734)998-9850
                         Turner Senior Resource Center
                          2401 Plymouth Road, Ann Arbor MI 48105

 

 


The following changes and additions to Support Groups as of 5/7/15:

NEW SUPPORT GROUP TO START IN MT. PLEASANT ON JUNE 1
Central Michigan University Dept. of Counseler Education is sponsoring a new support group.  First meeting:  Monday, June 1 at 7 pm.... featuring Dr. Glen Ackerman (MSU Movement Disorder Clinic), with introduction by Debby Orloff, MPF's CEO. 

Contact Dr. Terry McGlasson 989-774-6527.
Location:  Education & Human "S"ervices Building #322, 3rd floor Further sessions to be announced.


Barry County/Hastings Support Group TIME CHANGE      2nd Wednesday, 5:00 - 6:30 pm
          Barry County Commission on Aging
          320 West Woodlawn Avenue, Hastings MI 49058
          Contact:  Tammy Pennington (269)948-4856

MONROE SUPPORT GROUP is temporarily discontinued.  Contact MPF for further information.

ROCHESTER SUPPORT GROUP MOVED TO OPC (Older Persons Commission) on May 6

     New time: 6:00 - 8:00 pm
     Address:  650 Letecia Drive, Rochester MI 48307
     Contacts:  Nancy Knitter (248)852-8464;  Pat Yarnold (248)759-4562

GROUPS CHANGE TIME OF MEETING:

     Battle Creek Young Onset Group:          New Time:  4:30 pm

     Jackson Support Group:                            New Time:  6:15 pm

     Muskegon Support Group:                       New Time:     10:00 AM

LANSING  DIALOG GROUP AND CAREGIVER SUPPORT GROUPS CHANGE LOCATION:

   Congregation Shaarey Zedek
   1924 Coolidge, East Lansing MI 48823

NEW SUPPORT GROUP  STARTS IN DEARBORN!!!
         
2nd Wednesday of each month at 7 pm
               Dearborn Senior Center at the Ford Community and Performing Arts
                   15801 Michigan Ave  - Club Room 3
                   Dearborn MI 48126
        Contact Alysha Goodwin at (313)806-4296

NORTHWEST OAKLAND at HURON VALLEY/SINAI HOSPIAL - has disbanded

NEW FACILITATORS:

    Gratiot County:  Welcome to Scott Hicks, LPN (989)875-5269 as facilitator.  Thank you
           to Jen Cook for 13 fabulous years!

   Howell:  Stuart Blatt, RPT, PhD, will head the support group AND the weekly exercise          program (810) 923-8970

    Manistee:    Tootie Rowell (231)723-8854
           Note:  Jeannie Lewis is back, also!!!

    Novi:  Ruthann Lapham has moved.  Rhonda Kotzen, RPT continues on

    Warren:  Nora Palanjian, DPT, will only head the exercise group
            Stacey Turner, RPT, and Mrin Dear, OTR, are new support group Facilitators

NEW - Leelenau County Support Group
         3rd Thursdays at 2 pm
         Leelanau Government Center
         8527 E. Government Center Drive, Leelanau MI
         Contact:  April Missias, Director,  (231)256-8125

NEW - West Bloomfield: new  exercise program with Dr. Stuart Blatt, RPT
        Beginning Thursday, October 23, 2014         Thursdays at 11:00 am - 12 noon
               Hechtman II Apartments, 3rd Floor Game Room
    6690 W. Maple, West Bloomfield MI 48322
        Contact:  Linda Klein  (248)592-2318

 


Alliance leverages independent nonprofit strengths to enrich programs for Parkinson's community.

For further information, contact Debby Orloff, CEO, MPF at 248-433-1011

The Michigan Parkinson Foundation is pleased to be a founding member of the Alliance of Independent Regional Parkinson Organizations (AIRPO), a consortium recently formed with the shared goals of finding a cure for Parkinson's and supporting those who live with the disease.  AIRPO encourages collaboration, leverages organizational strengths and maximizes efficiency amongst its founding member organizations, which include the Houston Area Parkinson Society, Michigan Parkinson Foundation, Northwest Parkinson's Foundation, Parkinson Association of the Carolinas, and Parkinson Association of the Rockies.

 

AIRPO formalizes a collaboration that began five years ago between Parkinson Disease Foundation (PDF) and several independent regional nonprofit organizations.  AIRPO, by leveraging each member's unique expertise, will enrich programs available to the Parkinson's disease community and build a support network for the member organizational leaders.  PDF will offer AIRPO administrative guidance and support.

 

Michigan Parkinson Foundation Board Chairman, Edwin B. George, MD, PhD, notes that "the Michigan Parkinson Foundation has 30 years of experience providing programs supporting persons with Parkinson's disease to share with the other members of AIRPO, and will benefit from the opportunity to collaborate in the Alliance's national and international education and advocacy efforts.  AIRPO will support the MPF's continued ability to use Michigan dollars to provide the programs needed for Parkinsons in Michigan, while giving us a stronger voice in the issues of importance to persons with Parkinson's disease throughout the country."

 

"Each AIRPO member organization seeks to address the diverse challenges facing the Parkinson's disease community.  AIRPO allows us to develop solutions to these challenges together.  Having the opportunity to learn from each other, and in some cases to work together, will enhance our collective ability to serve people with Parkinson's disease," noted Anne Thobae, Chair of AIRPO and Executive Director of HAPS in Houston Texas.

 

Robin Elliott, President of the Parkinson's Disease Foundation noted, "PDF is proud to collaborate with these outstanding organizations, all of which work tirelessly to meet the needs of people who live with Parkinson's disease and their families.  Together, we will ensure we are doing our best for those to whom we are held accountable - people with Parkinson's disease and their families."

 


The Professional Advisory Board of the Michigan Parkinson Foundation is pleased to announce that the 2015 Raymond B. Bauer, M.D., Research Grant has been awarded to JoAnne McFarland O'Rourke, MSW, LMSW, Director of Research at Western Michigan University College of Health and Human Services for her study:  "Evaluation of Two Neurofeedback Protocols for Parkinson's Disease Patients." 

The chief aim of the project is to delineate treatment methods that address comorbin conditions that often accompany disease. For Parkinson's Disease, these issues involve physical health such as gait, balance, and fatigue; mental health, such as depression and anxiety; and cognition, such as memory, word finding and attention.  these issues combine to affect virtually every aspect of life for PD suffereres.  Moreover, it becomes difficult for patients and practitioners to sort out comorbidities, including which symptoms take priority and which may be contributing to others.

 

the Raymond B. Bauer, MD, Research Award is presented annually to support studies of principal researchers working in Michigan colleges, universities, and not-for-profit organizations who work with students and trainees. the aim of this program is to help support research and to foster the study of Parkinson's among individuals with career interests in neurological disorders.  The level of support is up to $20,000 for a period of two years.  It is intended that the funds will be applied to educational expenses and research expenses.

Applications will be accepted for the Raymond B. Bauer, MD, Research Award in 2016.   Application format is available on:

https://www.parkinsonsmi.org/programs-support-groups/bauer-research-fellowship

For questions, please contact Debby Orloff, CEO, at (248)433-1011.  The deadline for application is January 5, 2016.  The Award will be presented in early March, 2016.


SOME PERSONAL THOUGHTS FOR DEALING WITH A DIAGNOSIS OF PARKINSON'S DISEASE

A PERSONAL OPINION & ACTION PLAN

By Ron Smith

I was diagnosed with Parkinson's disease (PD) in late 2006. Since then I have put much thought into what this diagnosis means to me and how to cope MOST effectively while living my life as fully as possible and doing things I enjoy doing, especially enjoying life with my wife, Dorothy. It is my sincere hope that what I think has worked for me may also prove helpful to others in dealing and living with the challenge of PD.

Underlying Basis

The underlying basis of my approach is that I need to have an assertive, action and questioning, pragmatic approach rather than a passive, laid back response to dealing with PD in order to make the best of a complicated, challenging life situation. My somewhat pragmatic approach to this is reflective of my engineering education and work experience. Have an orderly plan, ask questions, seek out the facts, then verify and validate the facts (i.e., get a second professional opinion on your diagnosis-I did and found it helpful, and, I suppose, reassuring in a way). It is important to realize that PD can be overwhelming at first, with a lot of possible symptoms, unique for everyone with some downright depressing complexity. It is different for each of us and a rational plan helps coping, at least for me.

While denial is generally not a very positive response, I believe a certain, healthy denial is helpful insofar as denying the disease control of your life and denying it control of your activities, as much as possible. Give the concept some thought!

Key Elements for an Action Oriented Approach

The key elements for dealing with the PD diagnosis for me seem to be centered around the following fundamental aspects, based on my 3-1/2 years of experience, observation, and involvement in the local PD community:

  • Obtaining and using the many excellent and available resources leading to gaining a solid understanding of the disease and its many implications.

  • Selecting and using a knowledgeable and experienced movement disorder neurologist.

  • Learning about and understanding how the various meds used work, their side effects, and all vital contraindications.

  • Implementing lifestyle changes by including a habitual, aggrressive, consistent, regular, aggresssive aerobic and resistence exercise program. Do this if nothing else!

  • Engagement and active participation with your family in your local MPF support group if available - priceless and worth many times over the cost (0, except for donations!). Dorothy is very active with me. I find this essential.

  • Family involvement including participation with your loved ones and family in the MPF sponsored two hour orientation program and 6 week Living with PD workshop and repeat if it's been awhile. We found these both very helpful.

  • Record keeping, communication, and observation. Develop and maintain an up to date clinical history, med list, emergency procedures (for me with another chronic condition this is critical), and observations for your physician on what's going on.

  • Engagement in volunteer work in the PD community. This is giving back for gifts received in knowledge and interaction with others in the PD community.

  • Maintaining good nutrition and emotional health. Vital but a bit removed from my knowledge base and experience to permit much comment.

FURTHER THOUGHTS & SPECIFIC SUGGESTIONS

Resources

Fortunately there is a myriad of excellent resources readily available including books, brochures, and paper booklets, internet sources, handouts from the MPF, and library materials maintained by the support groups. MPF has a card with PD contraindicated meds that you should get. MPF also has an information and referral program providing names of nearby physicians experienced in treating PD patients. The presentation by MPF in the orientation program is great and the six week MPF workshop also provides useful documentation. The MPF has many separate resources including its newsletter, The Messenger, in addition to its website (www.parkinsonsmi.org), and over 55 support groups in Michigan. Get on their mailing list.

Your neurologist and pharmacist can also provide information and existing patients are likewise good sources for doctor referrals.

Useful PD books are The Parkinson's Disease Teatment Book (overall coverage) by Ahlskog and Making The Connnection Betweeen Brain And Behavior (med effects) by Friedman. Both are excellent and I got my used copies at nominal cost from amazon.com. Other must haves are Parkinson's Disease Resources List (a total resource listing) and Web Resources for People with Parkinson's (web resources available), both available at no cost from MPF or the Parkinson's Disease Foundation. Finally, the National Parkinson Foundation publishes a great set of booklets including coverage on medication, nutrition, fitness, caring/coping, understanding PD, practical pointers, mind/mood/memory, and speech/swallowing.
Finally, I subscribe to the Northwest Parkinson's Foundation weekly newsletter and monthly letter (bbell@wpf.org). It is provided at no cost and they cover much of the current research and trial info. It keeps me up to date.

Physician

I was more comfortable selecting a neurologist who is a movement disorder specialist who primarily treats PD patients, is knowledgeable and experienced (years) in the field and is suggested by other patients and the MPF. If in doubt, seek an interview and go prepared with a list of questions. Get a second opinion of your diagnosis (I did and was happier for it).

Medications

Medications (together with exercise) are the cornerstone of treating PD, and every person requires a different combination of medications. What a person takes this year may be changed next year in order to gain more control over the PD symptoms and side effects that all medications have. Keeping on a schedule of taking medications is essential and you need to learn specifics about the medication: what each drug does, when to take it (hours of the day, with or without food), what is supposed to be the positive effect, what are the side effects, and if there are other medications that you should not take with them. It may take a little time to learn about the different drugs and forms - like learning a new language. You can do it with help from others. Get Friedman's book to help in dealing with the side effects.

Record Keeping and Communication

Maintain an up to date clinical history and a list of your meds and consider an ID alert system such as Medic Alert (which I use). I find it helpful. The med list should contain aspects such as the date, file name, patient name, morning and afternoon protocols, script and over the counter (OTC) medications, med names, dosages, purpose-why being taken, prescribing physician, special precautions and contraindications, any PRN meds and when taken, dates when changes are made, and any other special conditions. Maintain a complete clinical history. Space does not permit a conceptual outline here. Keep it all on flash drive.

Engagement In The PD Community

Say thanks to the MPF, interact with the organization and other patients, and participate. Help to keep the invaluable services provided by MPF to continue.

Two last thoughts: I believe that every one of us needs to take an active role in managing our Parkinson's disease and the only useful generalization about PD is that there are no generalizations! Each of us is unique.

Keep On Moving!

Ron was an avid runner and long distance bike rider for some 20 years and a 3:28 marathoner. He was diagnosed with myasthenia gravis in 1997 (a rare neurological disease with some similar symptoms to PD including fatigue) and subsequently spent six years trekking in the Alps on summer vacations. He is a double cancer survivor (thyroid & prostate). He completed the megatransect (ultrahike.com) in Lock Haven Pa. in 2005 (not last) and 2007 (last this time), a 25 mile trail walk/run in the Pennsylvania mountains with over 5,000 feet of ascent and descent and big, bad boulder fields to cross. He finished standing in both cases. He welcomes your thoughts and comments on these suggestions (c/o MPF at director@parkinsonsmi.org).

 

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Richard Trosch, M.D, Movement Disorder Specialist, Director, Parkinson's and Movement Disorders Center, Southfield, MI, Member, Michigan Parkinson Foundation Professional Advisory Board.

In January, the US Food and Drug Administration approved the use of ioflupane iodine-123 injection or DaTscan,developed by GE healthcare, as an aide in the differentiation of Parkinsonian syndromes from essential tremor. DaTscan is a radionucleotide agent with a high affinity for the dopamine transporter (DaT), a protein found on dopamine neurons. A specific marker for DaT, DaTscan produces images that provide visual evidence based on the density of dopamine transporters. Once injected, DaTscan will bind to or "tag" healthy dopamine neurons in the striatal region of the brain. The radioactivity from this drug may then be visualized by single photon emission computed tomography or SPECT, an imaging technology that is relatively inexpensive and widely available.

DaTscan is now approved in the U.S. for the diagnostic differentiation between Parkinsonism vs. essential tremor. In the European Union, where DaTscan has been available since 2000, it is also indicated for the diagnosis of Lewy Body dementia versus Alzheimer's disease. The projected cost for a DaTscan will be about $1500 to $2000 for the compound, with additional charges of the procedure fee and diagnostic interpretation. Insurance coverage has been established for Medicare and Blue Cross Blue Shield and it is anticipated that coverage by other medical insurers will follow.

How is it administered?

Prior to the DaTscan injection, an oral administration of 120 mg potassium iodine is recommended to minimize unnecessary thyroid uptake of radioiodine. The DaTscan agent is delivered as an injection via an intravenous catheter. After three to six hours, the patient is placed in the SPECT scanner and a detector, called a gamma camera, is used to visualize the distribution and quantity of the DaTscan compound within the brain. This procedure will take about 30 minutes to complete.

The DaTscan agent works by binding to or "tagging" the DaT protein, located on dopamine brain cells. This is used to visualize the location and density of dopamine brain cells, which "light up" on the image. If the parts of the brain where dopamine cells should be remain dark on the scan, an expert reader may diagnose early Parkinson's disease or Parkinsonism. DaTscan has been shown to have a 97.5% diagnostic sensitivity, meaning that it will be abnormal in 97.5% of patients with Parkinson's disease. Because other Parkinsonian syndromes, including Progressive Supranuclear Palsy (PSP), Multiple Systems Atrophy (MSA) and Corticobasal Degeneration (CBD) also have a dopaminergic loss, similar to Parkinson's disease, DaTscan will not be able to discriminate between these disorders.

Reported adverse effects from the DaTscan agent include headache, dizziness, nausea, vertigo, dry mouth, and injection site pain and hypersensitivity reactions. In the European experience, with over 300,000 doses dispensed, no serious adverse effects have been reported. DaTscan in contraindicated in patients with a know sensitivity to iodine, in women who are pregnant or breastfeeding, and in patients with impaired kidney or liver function. Also, certain prescription medications will need to be stopped prior to this study. Although this agent is a radiopharmaceutical, the minimal amount of radiation exposure is considered clinically insignificant.

How will DaTscan be used?

Currently, there is no definitive test for PD. Establishing a diagnosis of Parkinson's disease remains a clinical process, hinging on the patient's description of their symptoms and the physician's findings on neurological examination. The accuracy of a diagnosis of PD is dependent upon the skill and experience of the examining physician and remains a "best guess". Studies examining the accuracy of this guess have found an error rate of about 25 to 30%. Improved diagnostic accuracy can be achieved by following a patient's clinical course over time and by demonstrating an improvement with levodopa treatment. A diagnosis of "definite" Parkinson's disease, however, requires pathologic confirmation. During life, if the classic Parkinson's disease symptoms, signs and response to levodopa are present, a diagnosis of "probable PD" may be made. Clearly, objective measures to aide in the diagnosis of PD are needed and much work is being done to discover biomarkers for this illness.

DaTscan will serve as a diagnostic adjunct, meaning it can provide additional information about a patient's condition. It cannot be used to establish a diagnosis of PD, however, it may provide additional information to help establish or refute a particular diagnosis. The utility of DaTscan in the diagnosis of PD will be limited to special circumstances. If you have already received a diagnosis from an expert and are responding well to dopaminergic therapy, PET and SPECT scans would not add any new information and therefore likely to be unnecessary. Several experts have suggested that approximately 5% of Parkinsonism/PD cases may be DaTscan candidates, with the majority of Parkinson's disease patients not requiring this test. Instead, DaTscan will be reserved for cases where there is diagnostic uncertainty, for atypical cases of tremor, when the distinction between PD and essential tremor is unclear, in psychogenic Parkinsonism, and for patients who have a difficult time accepting the diagnosis of Parkinson's disease.

Within the neurologic community, skeptics have voiced concerns about the potential for inappropriate testing, overuse and/or misinterpreted testing. Whether an internist or general neurologist should ever order a DaTscan has been the subject of considerable debate. Clearly, most Parkinson's disease patients will not benefit from a DaTscan and the non-specialist may not be trained to recognize when this test is required. A less expensive alternative, a consult with a movement disorders specialist, provides greater diagnostic accuracy and will prevent unneeded testing.

 

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