No Parkin' - Central New York Parkinson's Support Group
Volume 15, No. 1 - January 2006
Editors: Marge Moylan & Nancy McCaffrey
Feature Write: Ed McCaffrey
Production Staff: Margaret & Bernie Bailey, Erhard & Margaret Gantner, Barbara Grogan, John & Thea Matterese, Pat Moylan, John & Jo Schmidt, Hank & Rose Marie Taylor, and the Rome Catholic School Students.
World Parkinson Congress
The first ever World Parkinson Congress will take place in Washington, D.C.; from February 22-26. This will bring together all the different groups who have a genuine concern about the disease we call PD. It will bring together not only the people who do the research and the people who provide the professional care - doctors, nurses, therapists, psychologists - but also invited are the patients who have the disease and the families, friends and others who provide the care needed. This is the first time something like this has been attempted, at least on such a broad scale. Think of it - World Wide!
Of oourse the most exciting thing for me is that Pat and I are going to this Congress!
One of the topics being investigated is the connection between creativity and Parkinson's. They are having an exhibit of various forms of art work done by PWP. Poetry is one of the categories of the fine arts, so both Ed McCaffrey and I submitted some of our poetry for consideration, and each one of us had a poem selected for the exhibit.
I'm looking forward to meeting some of the Parkinson involved people I have interviewed by phone for articles in Parkinsonian People but have never met in person, and also getting reacquainted with others whom I once met but haven't seen in years.
CNYPSG Members Meet with Parkinson's Alliance Leaders
Six members of the Board of Directors met for lunch with PA President Margaret Tuchman and Executive Director Carol Walton on October 21 at the Waterfront Grill in Herkimer.
Representing CNYPSG were President Pat Moylan, 1st VP Ed McCaffrey, 2nd VP Myrtleann Seifried, Corresponding Secretary Marge Moylan, Treasurer Nancy McCaffrey, and board member Barb Grogan. Also present were Dale and Maureen Severance from Manlius.
Carol and Margaret stressed two important points for people with PD - the importance of patient participation in drug trials, and the importance of seeing a Movement Disorder Specialist. We had a good lunch and a nice visit and came away with lots of goodies to give away at our next symposium.
Syracuse Symposium
The Syracuse Symposim which was held in November, attracted a good crowd, including the McCaffreys and Moylans. It was a very educational and interesting day, covering a variety of important topics. The morning's panel, chaired by Dr. Mahalia, was a very informative PD update. The afternoon session began with a presentation on Medicare changes, especially the new Part D prescription drug insurance. This is confusing to say the least, but the speaker urged people with questions to visit their Social Security office, or the Office for the Aging. The final session was an excellent talk on caregiving issues.
One of the things I liked best about this symposium was the vendor displays which were set up outside of the room we were meeting in. The first display was a booth about Presbyterian Home's new movement disorders unit being offered by Lauren McShea, PR person at the Home. She was showing a DVD about the PD wing, which featured Bob Luberda and Marge Moylan, with a cameo appearance by last year's PAW grand marshal, Rob Esche.
Tackling Changes in Mental Functioning with Parkinson's by Martha Glisky & Brenda Havellana
Often hidden behind the more obvious physical symptoms of Parkinson's disease are the lurking cognitive changes associated with this illness. By some estimates up to 20% of people with Parkinson's will develop an actual dementia, but milder cognitive impairments are a distinct and common feature of this disease that can have a significant impact on quality of life.
Parkinson's can affect several areas of cognitive functioning. One is a cluster of abilities known as "executive functions." Examples of executive functions include performing multiple tasks simultaneously, planning, sequencing, organizing, problem solving, and abstract reasoning. Inhibiting, stopping, and switching behaviors are also aspects of executive functioning. Some people experience difficulties in all areas, while some have selective deficits.
As the name implies, executive functions are typically high level abilities that oversee many other cognitive abilities. As a result, difficulties in executive functioning can secondarily impact other abilities, such as memory.
Executive functioning is essential for a broad range of abilities necessary for working through the daily challenges of life. Thus, when these abilities are compromised, as is the case with many Parkinson's patients, there can be challenges to the tasks of daily living. For example, patients who are less efficient at multi-tasking might report increased difficulty preparing family meals, given that numerous steps must be completed simultaneously and in a timely manner during meal preparation. Others find driving becomes increasingly overwhelming, as it necessitates paying attention to passengers, road signs, traffic lights, and other drivers.
Executive dysfunction can also hinder an individual's abilities in planning and structuring. Patients experiencing such problems might report greater difficulty setting and attaining goals. For instance, one patient with Parkinson's reported that although he knew he had several tasks to accomplish each day, he felt like he spent his time "walking in circles" and ultimately making minimal progress on his "to do" list.
Some Parkinson's patients find they are less efficient at managing personal finances. For instance, individuals who once prided themselves on their mathematical mastery have reported that balancing their checkbooks has become an arduous task no longer accomplished with the ease they were once accustomed to.
Some patients may find they have difficulty inhibiting or controlling their emotions or behaviors. They may say inappropriate things, have trouble managing emotional responses, or find it difficult to engage in or disengage from certain activities.
Adjusting to the Changes
Despite the challenges presented by Parkinson's and the related executive dysfunction some people experience, there are ways to compensate for these difficlties. Here are some helpful tips.
Beware of biting off more than you can chew. Taking on too much at a time can result in feeling overwhelmed, frustrated and exhausted.
Try to engage in one activity at a time. Avoid multi-tasking or switching back and forth between tasks.
When it comes to meal preparation, instead of preparing a meal alone, cook with a friend or family member. By distributing the work, one will be less likely to feel overwhelmed by the multi-tasking demands of meal preparation. In addition, one might reap the many benefits of good company!
When it comes to driving, build extra time into your schedule for the commute. Giving yourself a cushion of time can decrease the stress associated with arriving at your destination on time, and can give you additional decision making time when you're faced with a confusing traffic situation. Don't try to do anything else while driving. You need to reduce your distractions and focus only on the important task of driving. Turn off the radio, limit conversation, and keep your thougts on the task at hand.
Alternatively, allow yourself to be chauffeured. Occasionally handing off the car keys and savoring the opportunity to view the passing scenery is a nice break from the demands of driving. Plus, you might find yourself delighted by the companionship of your escort for the day.
When it comes to balancing your checkbook, ask a friend or family member to check your math. If privacy is a concern, your financial institution may be able to assist with bookkeeping or suggest a private contractor.
Use external aids to help with planning and organizing. Write things down then organize or sequence the information from your written copy.
Stay organized. Have specific places for specific things and always return them to that spot.
Use a day planner. Write down your daily schedule ahead of time so that you can plan your day in advance.
Finally, keep in mind that you are only one person with natural human limitations. Take your time and don't be afraid to ask for help.
This article is reprinted from the July/August issue of the Parkinson's Post with permission from the Northwest Parkinson's Foundation. Martha Blisky is a neuropsychologist at the Booth Gardner Parkinson's Care Center in Kirkland, Washington, and Brenda Havellana is a doctoral student at Seattle Pacific University.
Meeting Notes
Our annual Education Day was held October 18. We were pleased to have Dr. E. Ray Dorsey from the Movement Disorders Unit of the Neurology Department of the University of Rochester Medical School. Dr. Dorsey is currently an instructor in neurology and a fellow in movement disorders. He gave a very informative speech describing the non-motor aspects of Parkinson's disease. He also fielded a lot of questions from the audience about PD. We thank him for taking the time to come to talk to us.
The group enjoyed a video from "The Parkinson Care Series" at out November meeting. It was entitled "Daily Living" and it discussed some specific strategies to help people with PD lead full, active and dignified lives. A group discussion was held following the film.
Our holiday party was enjoyed by all on December 13. Christmas carols were sung led by Marge Moylan with Lauri Mitchell at the piano. Rev. Webster joined us to play a piano selection and Jim Kehoe sang an operatic solo. Santa arrived in his red truck chauffeured by his favorite elf Pete, to make the party complete! After a bit of nonsense from Nancy everyone sampled the great variety of refreshments.
By the way, our thanks go out to Myrtleann Seifried who has been doing a fantastic job of planning the refreshments for our recent meetings!!
Welcome! We were pleased to have Virginia VanSlyke at our October meeting and hope she'll come back and join us in our many activities in the future.
M&M Shows and Health Fair
The Moylans and McCaffreys were invited to Utica College and Herkimer County Community College to present their program about life with PD, both as persons with PD and as caregivers. The students at Utica were Occupational Therapy students and the Herkimer group was studying Physical Therapy. It was a delightful experience for the M&Ms as they were very attentive audiences and asked numerous questions! We thank them for giving us the opportunity to meet with them.
On Nobermber 3, our group participated in the annual Health Fair at the Ava Dorfman Senior Center in Rome. It is always a pleasure to be a part of this fair as it is well attended and gives us another chance to get information about Parkinson's disease out to the public. We thank them for inviting us.
PAW Update
In our last issue we reported that PAW, the Parkinson's Awareness Walk, had raised at least $30,000 for the Parkinson's wing at the Presbyterian Home in New Hartford. We stopped at the Home the other day to drop off three more checks which had arrived in Christmas cards and were told that the total is now $35,614! That will be a challenge for next year, to top that total. But with the support we've seen to this point, I have every confidence that it can be done. PWP are GOOD people, and so are their carers and friends.
Speaking of good people, remember Rob Esche from the walk? He is the young Philadelphia Flyers hockey player who served as grand marshal for the 2005 PAW. It was recently announced that he is one of three goalies chosen to play on the USA hockey team at the 2006 Winter Olympics in Torino, Italy this February. Congratulations Rob!!
Depression and Parkinson's Disease
Depression can strike anyone, but people with Parkinsonn's disease may be at greater risk. Treatment for depression helps people manage both diseases, thus improving the quality of their lives.
The true prevalence of depression among people with PD is difficult to determine because there are no standardized assessment tools designed to evaluate depressive symptoms in the context of this illness. However, it is estimated to be quite common - as many as half of people with Parkinson's may suffer from depression.
Despite the enormous advances in brain research in the past 20 years, depression often goes undiagnosed and untreated. People with Parkinson's, their families and friends, and even their physicians may misinterpret depression's warning signs, mistaking them for inevitable accompaniments to PD. In addition, men who are more likely to develop Parkinson's are more likely than women to have difficulty acknowledging depression.
Symptoms of depression may overlap with those of Parkinson's and other physical illnesses. However, skilled health professionals will recognize the symptoms of depression and inquire about their duration and severity, diagnose the disorder, and suggest appropriate treatment.
Remember, depression is a treatable disorder of the brain. Depression can be treated in addition to whatever other illnesses a person might have, including Parkinson's. If you think you may be depressed or know someone who is, don't lose hope. Seek help for depression.
Source: NIH Publication #02-5007, May 2002
Symptoms of Depression
Persistent sad, anxious or "empty" mood
Feeling of hopelessness, pessimism
Feelings of guilt, worthlessness, helplessness
Loss of interest or pleasure in hobbies and activities that were once enjoyed, including sex
Decreased energy, failure, being "slowed down"
Difficulty concentrating, remembering, making decisions
Insomnia, early morning awakening, or oversleeping
Appetite and/or weight changes
Thoughts of death or suicide or suicide attempts
Restlessness, irritability
If five or more of these symptoms are present every day for at least two weeks and interfere with routine daily activities such as work, self-care, and childcare or social life, seek an evaluation for depression.
**Note: "Brain Molecule May Lead to New Depression Treatments"
Scientists have discovered a protein that seems to play a crucial role in developing depression, a finding that may lead to new treatments for the often debilitating illness - and fundamental understanding of why it strikes.
Although problems with the mood regulating brain chemical serotonin have long been linked to depression, scientists don't know what causes the disease that afflicts some 18 million Americans, or exactly what serotonin's role is.
The newly found protein, named p11, appears to regulate how brain cells respond to serotonin, researchers from Rockefeller University and Sweden's Karolinska Institute reported in the journal Science.
"We're all very excited about this discovery," said Nobel laureate Paul Greengard, a Rockefeller neuroscientist who led the research. "People have been looking for modulators of serotonin for a long time."
Helpful Hints to Ease the Life of Parkinson Disease Patients
Thanks to many attractive and durable meal time aids on the market today, Parkinson's patients can continue to eat with greater independence, despite tremor, rigidity or impaired fine hand coordination.
Tip and Suggestions
Attachable plate guards provide a rim on one side of the plate. Food, such as small vegetables, can be pushed against the guard, where it falls onto the fork. 'Scoop dishes' contoured with raised edges, plates with suction cups and plate guards - all help prevent spills and are readily available.
If eating is slow, use a plate with a hot water container attached to the underside to keep food hot.
Silverware with built-up plastic handles are easy to grasp.
Use a soup spoon instead of a fork for small pieces of food.
Flexible plastic straws can reduce spills when tremor exists.
A light weight mug with a large handle for easy grasping is useful when tremor is severe.
Source: American Parkinson Disease Association pamphlet
Editorial Tip from Nancy
When eating in a restaurant, ask the waitress to have your meat cut in the kitchen before they serve it. Most restaurants are happy to accommodate you.
Book Recommendation
"Parkinson's Disease and the Art of Movement" is the title of a book which was praised by one of the speakers at the Rochester symposium held last September. It is good for exercise. Check your local library or bookstore. It can be order at a cost of $20.
Word from Bob
I want to thank the many members of CNYPSG for giving me the opportunity to bring 'No Parkin' to a global audience through the Internet. It has been a pleasure to work on each newsletter since July 1999! You're a great bunch - and I just want to wish you all a very Happy New Year!
İMEW Press International 2006