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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


Board and Professional Advisory Board Election Results

At the Annual Meeting of the Board of Directors and Professional Advisory Board on December 3, 2014, election results were announced.  We are pleased to inform you of the following:

                                     Board of Directors
Officers:  Chairman:  Edwin B. George, MD, PhD
             President:  Peter A. LeWitt, MD
             Vice Chairman:  William Suminski
             Treasurer:  Lawrence Millman, CPA
             Secretary:  Nanette Michaels


New Board Members:          Welcome to:
           Elizabeth Berlow, MPH, RN, of West Bloomfield, who currently works as a hospice nurse at Great Lakes Caring and Dr. Robert Richard, PhD, of Bay City, retired from NASA, Facilitator of the Flint and Bay County Support Groups.

Re-elected Board members:
    3 year terms:  David Bartczak, Todd Gardner, Dr. Edwin George, Maxine Meach
    2 year term:  Joseph Katulic
    1 year term:  Vincent Marino

Many thanks to Robert Berlow, Esq. and Richard McKnight, Esq. who have relinquished their seats on the Board of Directors. Both have been instrumental in fostering the mission of MPF through their participation in many activities.  The April 2015 Facilitator Training will be named in their honor.

                      Professional Advisory Board

New Members:   Welcome to:
      Dr. Elizabeth Pickut, MD, MPH, Movement Disorder Specialist, Hauenstein Center, St. Mary Hospital, Grand Rapids
       Dr. Danette Taylor, DO, Movement Disorder Specialist, William Beaumont Hospital

Re-elected Members:
      Dr. Stuart Blatt, PhD, RPT,
      Dr. Timothy Collier, PhD,  researcher, Michigan State University
     Dr. Doree-Ann Espiritu, MD, geropsychiatrist, Henry Ford Hospital
     Dr. Edwin B. George, MD, PhD, movement disorder specialist, WSU and John B. Dingell VA Hospital, Detroit
      Dr. Shana Krstevska, MD, movement disorder specialist, Henry Ford Detroit & Troy

Many thanks to Dr. Richard Berchou, PharmD.(WSU School of Medicine - Pharmacy) and Dr. Bradley Evans, MD, (Northern Michigan Neurology, Traverse City) who have stepped down from the PAB.  

 


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 beginning Monday, March 2, 2015
2:00 - 3:00 pm, followed by an additional 30 minute social time.
$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, March 15:  2-3:15 pm           Saturday, April 25:  11-12:15 pm                                Saturday, May 16:  11-12:15 pm        Sunday, June 2:  2-3:15 pm
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 3/20/15:

ROCHESTER SUPPORT GROUP WILL MOVE 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!!!
      Wednesday, April 8, 2015:      
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 - 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

NEW - Barry County Support Group
          1st Wednesdays, 5:00 - 6:30 pm
          Barry County Commission on Aging
          320 West Woodlawn Avenue, Hastings MI 49058
          Contact:  Tammy Pennington (269)948-4856


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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Kara LaMarre, Support Group Facilitator for the Alpena Parkinson Support Group and Debby Orloff-Davidson, MPF CEO

Living alone has its advantages. There's no one to clean up after. You can do as you please when you please. There is a downside however, especially if you have to deal with issues associated with Parkinson's disease, such as freezing and falls.

At our recent Annual Facilitator Training Program, a panel of five individuals gave their insight into living alone as safely and as independently as possible with Parkinson's disease. Peggy, Doug, Jeannie, Jonathan, and Nona, who live in both urban and rural areas, provided practical ideas for persons living in their home without the benefit of having a companion to aid them when a need arises.

Doug has organized his house - and himself - to conserve energy and perform tasks. He has motion sensors that turn on lights in each room as he enters. He hangs a tennis ball from the ceiling in the garage, so when he pulls his car in and the tennis ball touches the window, he knows he has parked correctly. He eliminates the need for daily cleanup of the bathroom sink by using an electric shaver and toothbrush while taking his shower. Doug also uses plastic cups and bottles to avoid problems with breakage. Doug feels strongly that organization and planning ahead greatly reduce incidences that may cause problems for him.

Peggy spoke of safety concerns not only for her as a person with Parkinson's disease but as a woman living alone as well. Keep records in case of emergency, such as contact information, a listing of medication including time you take them and dosage, as well as contraindicated medications. Peggy is also very active in her community with volunteer, genealogy, library and civic obligations. If Peggy doesn't show up, someone is looking for her.

Wearing a medical identification bracelet or carrying a card helps to identify what condition(s) one has. Local fire and police departments, Councils or Commissions on Aging and hospitals have developed programs to provide appropriate emergency care at home. When a rescue team is called, it is important to have easily accessible information about your condition in order to assist you quickly. The Petoskey area Retired Senior Volunteer Program (RSVP) promotes the Vial of Life program. An individual fills out a form with vital medical and emergency information and places it in a magnetic holder that attaches to the refrigerator. Many individuals have contacted their local law enforcement, emergency medical service or 911 operations to provide them with information so responders are made aware of the caller's Parkinson's or live alone status. A strong recommendation from the entire group was to familiarize yourself with what services your local community provides to those with special needs.

Other tips for emergency situations include keeping a phone in each room or a cell phone in a fanny pack, preprogrammed with important contact numbers. Inform others of your schedule so they can take action if they have not seen them in accordance with your daily routine. Nona and Jeannie stated a family member or a friend is usually checking in with them with a friendly phone call. Neighbors keep a watchful eye on them which is helpful most of the time!

Everyone agreed that you need to arrange with someone to be your advocate, whether this is a family member, a friend, or a professional. A Durable Power of Attorney (DPOA) is a legal document that dictates that a designated advocate or successor advocate shall have power to make care, custody and medical treatment decisions for you in the event you become unable to participate in medical treatment decisions.

Home safety is important to everyone. An in-home safety assessment can be performed by an Occupational Therapist with an order by your physician. Lucy Kenyon, OTR, from MidMichigan Health Park in Mt. Pleasant, encouraged everyone to investigate the variety of equipment available through medical supply companies and catalogs. She noted that bathrooms can be the most dangerous rooms in the house in terms of falls. Equipment such as shower chairs, toilet risers, commodes with arms and legs, grab bars, non-skid mats, and hi-low tote bars can be very helpful. It is important to eliminate clutter and furnishings, such as area rugs, coffee tables and electrical cords, which would promote falls.

If you do not have someone to help you to dress, a variety of dressing aides can be purchased such as a dressing stick, reachers, and grabbers, elastic or coiled shoe laces, and long or fold-up shoe horns. Velcro can be used in place of buttons and snaps. Many people wear pullover shirts and pants with elastic waistbands.

Getting up from a chair or getting out of bed can be problematic. It is important to sit in firm chairs with arms. Placing cushions on the seat or a raised platform under the chair legs to raise the height can be helpful. Frames can be placed on the bed to assist in getting out of bed. In this way, you can rise without the assistance of another person. A Physical Therapist can make recommendations to help you to move from one position to another.

Being able to take care of finances is also important. If handwriting is a problem, the computer can be useful. Some people have their checking account on their computer. Signature stamps can also be purchased.

Being centered and promoting a feeling of calmness helps Jonathan deal with his disruptions from P.D. If he is having difficulty with symptoms such as freezing, gaining control over his emotions helps him to deal with the problem he is experiencing. Creating the inner peace to contend with symptoms rather than reacting to them is very important.

There were many suggestions for dealing with freezing episodes, which seemed to be one of the most problematic symptoms to cope with while alone:

  • Try stepping or rocking backwards then forwards.

  • Step over an imaginary line

  • Count to 10

  • Say "MARCH" to yourself

  • Sing

  • Throw something on the ground to step over, such as a popsicle stick

  • Do a "primal scream"

  • Grit your teeth

Getting out, staying active and involved in the community also helps. Each of the panel members is active in his or her respective community. They all noted that you need to reach out to others, keep busy and cultivate your sense of humor. "Remember that you can't do it all - just do what you can. You have to let go of some things."

Problem solving areas that you might find challenging can result in helpful solutions. It was not possible at this session to discuss all the areas in one's life that could be challenging if you live alone, such as shopping and meal preparation, or countering "alone-ness." Identifying what are the problems and methods to attack them in order to maintain independence and safety as well as a sense of well-being is the first step. Seeking out others to help directly or to suggest ways to manage comes next. As several people on the panel said, "never be too proud or afraid to ask."

P.S. All of the above can apply to those living with others as well. We invite you to send other tips to the MPF office so they may be included in future issues of The Messenger. If you would like a copy of a Durable Power of Attorney or Home Safety Checklist, please contact the MPF offices at (800)852-9781.

MPF SERVICES

Over the years, the Michigan Parkinson Foundation has been diligently working towards meeting the needs of people affected by Parkinson's and their families. Two programs have been in operation to assist people with the practical aspects of living with Parkinson's disease.

The Medication Assistance program is designed to help people who do not have prescription coverage as a part of their health insurance and for those who are struggling with medication costs. MPF provides limited funding, currently $250 per year, for Parkinson's medication and will provide information on other sources of assistance. Contributors to the Shawn Bolton Medication Assistance Fund aid people in this needed program.

The Adult Day Care Services Assistance program serves to subsidize the cost of an individual attending a day care program, providing the family members with some needed respite and the person with Parkinson's with a safe environment out of the home. MPF will cover up to $360 per year for the individual to participate. MPF can provide the facility with educational material and is planning further training programs in the near future to ensure that people with Parkinson's receive the best care possible. There are no financial restrictions on the ability to obtain this funding.

By calling the Michigan Parkinson Foundation, people interested in learning more about Parkinson's disease can obtain up to- date information about PD and care issues. Those seeking referrals to neurologists who are interested in treating people with PD and answers to other issues will be able to obtain information about resources in their local area. The toll-free line is (800)852-9781.

 

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Richard M.Merson, PhD, CCC-SLP
Kathleen Roeder, MA, CCC-SLP

Speech-Language Pathology Department William Beaumont Hospital, Royal Oak, Michigan

Dr. Richard Merson is Coordinator of Research, Speech and Language Pathology, William Beaumont Hospital and a Member of MPF's Professional Advisory Board. Kathleen Roeder is Supervisor, Acute Care Speech Pathology and William Beaumont Hospital.

  1. Persistent coughing after swallow

  2. Regular choking on liquids

  3. Difficulty maintaining your weight

  4. Increasing eating time

  5. Worsening tongue control

  6. Chronic slow or delayed food passage

  7. Significant loss of appetite

Swallowing problems in Parkinsonism are not unusual and rarely unmanageable. The typical muscle impairments of individuals with Parkinson's Disease ( i.e. weakness, slowness, delayed-initiation, freezing, or tremor) may cause significant difficulties in controlling food or liquids in the mouth, adequately chewing or masticating , quickly passing the food to the throat, , protecting the windpipe (i.e trachea) from food and liquid choking, and finally smoothly and firmly receiving the food into the esophagus for passage to the stomach. All of these actions require the coordinated work of more than two dozen muscle groups (i.e. lips, tongue, cheeks, palate, throat, voice box, and food tube) that must be performed hundreds of times each day in 4-8 seconds.

Breakdowns in this chewing-forming-pushing process can cause choking when the food particles or liquids pass into the windpipe (i.e aspiration). Further, individuals may find that eating is too time consuming, requires too much effort, or may frighten them when the food does not pass easily into the food tube. These problems may lead to weight loss or reduced calorie intake that is so critical in maintaining energy and general muscular activity. We cannot take swallowing difficulties for granted. Some swallowing difficulties may cause liquid , saliva or food to enter the lungs on a recurring basis and leave you vulnerable to a lung infection. If these symptoms are severe, unresponsive to treatment and insufficient calories are achieved daily then a medical procedure to place a tube inside the stomach (i.e. PEG tube: Percutaneous Endoscopic Gastrostomy) may be considered.

Dysphagia: Swallowing Disorders

In medical terminology a disorder of swallowing is identified as a "dys-phagia" (Latin for difficulty swallowing). Dysphagia symptoms may occur anywhere from the lips to the stomach. If swallowing difficulties occur in the esophagus (food tube) and down through the entryway into the stomach then an Esophagram (i.e. an xray to examine the swallow) may be ordered by your physician and a gastroenterologist ( G.I. physician specializing in the digestive system) may be consulted. Sometimes the G.I. specialist will perform a procedure to expand or open the esophagus by a procedure known as esophageal insufflation to improve the passage of food . The physician may also prescribe medications to assist in some esophageal swallowing disorders. If however, the swallowing difficulties occur in holding the food in the mouth, chewing the food, or safely passing the food to the esophagus then a speech-language pathologist may be consulted to identify the dysphagia and recommend some exercises or alter the diet to manage the problems.

Different types and severities of dysphagia may be present in patients after surgery, in association with chronic debilitating illness, from loss of dentition, loss of salivation or other conditions. Symptoms associated with aging, stroke, over-medication, traumatic brain injury, myasthenia gravis, muscular dystrophy, multiple sclerosis and Parkinson's disease can cause dysphagia symptoms. Individuals with chronic illness must develop a good daily nutritional program that provides adequate intake of calories, critical vitamin, protein and carbohydrates, and sufficient hydration (liquids). Patients should work closely with their physicians, nutritional experts and caregivers to maintain a daily healthy diet.

The Dysphagia Team

(Primary Care Physician, Gastroenterologist, Neurologist, Radiologist, Speech Pathologist and the Spouse/Caregiver)

The speech pathologist is often the rehabilitation professional who will assist you in maintaining good oral muscular control and prevent food from entering the windpipe through treatment techniques. If necessary a specialized xray procedure called a Modified Barium Swallow fluoroscopy will be completed. Your physician is always the first person to contact when you are experiencing difficulty swallowing. If you need some assistance or further treatment of how to improve your swallowing a consultation with a speech-language pathologist affiliated with a hospital, an outpatient rehabilitation program, a homecare service or a skilled nursing facility is available with a medical referral.

The Modified Barium Swallow Procedure is the most common medical procedure jointly conducted by a speech-language pathologist specializing in swallowing disorders and a physician-radiologist to evaluate dysphagia. This xray procedure is not a complicated or lengthy diagnostic procedure. The patient sits comfortably erect in a special chair. The speech-language pathologist prepares and feeds the patient liquids, applesauce or crackers mixed with a Barium material for brief videofluouroscopic filming of the mouth, pharyngeal and esophageal swallowing events. This usually requires 15-20 minutes. The physician identifies any anatomic or physiologic disorders as he observes the swallowing tasks and the speech-language pathologist identifies any swallowing difficulties that can be treated. There are many other medical procedures that your physician may choose to diagnose your dysphagia and recommend treatment. They may include a Radiologic Imaging, Barium Esophagram, Manometry, Bolus Scintigraphy, Flexible Endoscopic Evaluation, or Ultrasound. Your physician will decide, based on examination, what dysphagia medical procedure(s) is most appropriate.

Swallowing Rehabilitation

Speech-Language pathologists usually provide the behavioral treatment for individuals with dysphagia. Treatment may focus on one or more of the following dysphagia symptoms: (1) improving or compensating for the individual's difficulty in chewing or managing food in the mouth; (2) preventing food or liquid from entering the windpipe ( i.e. the trachea); (3) reducing delays in transit of food by adjusting the textures, timing or preparation of food to be swallowed; (4) managing the schedule of eating to reduce fatigue and muscle weakness. The speech-language pathologist or physician may recommend a consultation with a dietitian to train caregivers to provide instruction or food preparations for some patients.

When the Dysphagia Team decides that an individual's diet should be changed to make swallowing healthier and safer, they may suggest a PUREED DIET or a MECHANICAL SOFT DIET. Usually, when swallowing liquids is difficult with persistent cough on thin liquids ( i.e. water leaking into the windpipe), a PUREED DIET with THICKENED LIQUIDS may be recommended. When liquid swallowing is safe but muscular weakness persists (slow eating, food gets stuck, food is poorly chewed), then a MECHANICAL SOFT DIET may be recommended. Some individuals have difficulty chewing, but can manage thin liquids. Special adjustments can be made to suit individual needs.

Dietary Suggestions for Dysphagia

Tips & Precautions

  • Don't eat when fatigued

  • Sit erect

  • Emphasize soft , moist foods

  • Don't talk while eating

  • Take smaller bites

Example of a PUREED DIET

  • *Thicken liquids to honey consistency

  • Cooked cereals, whipped- potatoes & squash

  • Strained fruits, applesauce, mashed banana

  • Strained meat, soft scrambled egg

  • Strained & whipped vegetables Thickening material available at drugstores include Thick-it, Nutra Thickt, ThickenUp

Example of a MECHANICAL SOFT DIET

  • Thickened liquids if necessary

  • Cooked or ready-to-eat cereal, soft bread

  • Well cooked vegetables

  • Cut-up canned fruit without tough membrane

  • Tender cuts of meat extra sauce or gravy

  • Eggs, cheese, macaroni, moist casserole

Summary

Swallowing problems or Dysphagia are not uncommon in patients with Parkinson disease symptoms. You should consult your primary care physician if you have persistent difficulty choking on liquids or eating comfortably on a regular basis. Most of the swallowing problems can be managed by a few individualized exercises, swallowing techniques or modifications in your diet. Good health is dependent on a well rounded diet, the use of plenty of liquids and an enjoyable eating experience.

Website References

American Speech-Language-Hearing Association, Dysphagia Research. http://search.asha.org (Conduct a search for the keyword Dysphagia.)

Dysphagia Resource Center: www.dysphagia.com

National Institute on Deafness and other Communication Disorders [NIDCD]: http://www.nidcd.nih.gov/health/voice/Pages/dysph.aspx

 

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