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Calendar of Events: Park Pic, 12:30-4:30 PM, July 17th; Parkinson Awareness Walk, Presbyterian Home CNY - 10:00 AM, September 8th; Open House at Presbyterian Home, 12:30 PM, September, 18th.

*Changes on the Horizon
*Support Group Stories
*Advances in Medication
*The Group Scoop
*Presbyterian Homes & Services
*Poetry Corner
*In Memoriam

Happy 15th Anniversary
Tips From the Trenches
Genetics of PD
Presbyterian Homes & Services
Meeting Notes
Poetry Corner
In Memoriam
Nancy's Nonsense
Note from Bob: The newsletter graphics occasionally overlap page content. I have tried to include when possible any items that have been blocked out.

3rd Annual Parkinson Awareness Walk

Calendar of Events
PAW Prints by Marge Moylan - page 2
More PAW Prints - page 3. *Did you know that aquatic classes are offered at the Presbyterian Rehabilitation Center? For more information call Betty at 315-272-2288
Parkinson's and the Eyes - page 4
More Parkinson's and the Eyes - page 5
The Group Scoop *CNYPSG was pleased to have Mary Lou Kunkel, and Judy Durso from Rome Hospital as our guest speakers at our September meeting. Norm Burak also reported on the Rochester symposium.
Odd-n-Ends Notices
In Memoriam
Addresses and "Nonsense"

Summer's Here! Picnic Time! - Would you believe this year will be Park Pic #13! It's true. The first one was held in July of 1992 - the year we began. That one was at Tom O'Donnell's house in Remsen. #2 and #3 were at the Mudges in Rome. #4 was in Clinton at Alterra Villa. Picnic #5 took place at Marin Kolwaite's home. And then we found Pat's Picnic Pavilion in Rome and we've been going there ever since. They always treat us well. The food is good, there's plenty of it, and the best part, we don't have to fix it! For those people who like to cook, we bring our own desserts. Feel free to participate. We look forward to seeing you on July 20th at 12:30. Bring your spouse, bring your family, bring your friends. Bring your appetite!
Speaking of food, aren't the refreshments at our meetings the best! We are all so grateful to the Schmidts and the Mattereses for all the effort that goes into it. Thea and Jo are masters at this. They don't just bring refreshments. They have a theme and a color scheme and a centerpiece on the table. They provide for all, having something for diabetics and something for those who are protein intolerant. They do a great job.
They do have help at the meetings, people who assist in setting things up. It would be great if anyone who wants to could do some of the baking once in a while. At our June meeting we were treated to a delightful strawberry dessert made by Barb Barker. If others who enjoy baking would like to help, call Jo or Thea or talk to them at a meeting. Everyone can use a helping hand now and then.
Also, don't forget - the winners of the Walter H. Dickson Memorial Awards will be announced at the picnic.

Meeting Notes - Lots of people joined us for the CNYPSG, Inc. Annual Meeting on April 20th. The membership elected Jack Busacker, Nancy McCaffrey and Robert Schaal to serve three-year terms on the Board of Directors. Our guest speaker for the day was Fil Talerico from the St. Elizabeth Area Trauma Center in Utica. Her topic was "Fall Prevention." She talked about why people fall and gave us many ideas on how to make our homes safer to prevent falls.
Paul Notar, Therapy Consultant from Medtronics Neurological, was our guest at the May 18th meeting. His presentation on Deep Brain Stimulation (DBS) was very enlightening and gave us much more insight into the procedure and the process leading up to the surgery. He gave a very positive outlook for those people who need more than medication to have a better quality of life.
Our guest speaker for the June meeting was Teresa Jones, Director of Marketing and Community Relations for the Presbyterian Home for Central New York, Inc. She presented the plan for the Elm wing, which serves people with PD. The first room to be refurbished will be finished by September 11th - the day of the Parkinson Awareness Walk, so we will all be able to see the first part of the wonderful state-of-the-art facility. After her presentation, we broke up into two groups so the people with PD and the caregivers had an opportunity to exchange ideas and discuss their problems.

Welcome! It is always fun to have new people join our group for our monthly meetings. People with PD always have interesting stories and ideas to share and we welcome you all and hope that you choose to come back and join in our many activities. We are please to say "WELCOME" to Frank Bai-Rossi, Jean White, Mary Jean Farley, Margaret Gantner and Joyce and Greg Varano.

CNYPSG, Inc. Board Meets - The Central New York Parkinson's Support Group, Inc. Board of Directors held their annual meeting on April 27, 2004. Members of the Board are: Jack Busacker (2nd VP), Bob Luberda (Finance Committee Chairman), John Matterese (Nominating Committee Chairman), Ed McCaffrey (1st VP), Nancy McCaffrey (Treasurer), Marge Moylan (Corresponding Secretary), Pat Moylan (President), Robert Schaal and Hank Taylor (Recording Secretary).

Rochester Symposium - The Parkinson Support Group of Upstate New York and the University of Rochester will host their annual symposium on September 18, 2004 at the Radisson Hotel in Rochester.
As in the past, CNYPSG will provide bus transportation at a cost of $10/person payable to Nancy McCaffrey on or before that day. A Birnie Bus will be at the First United Methodist Church, 105 Genesee St., New Hartford, NY at 7am on September 18th. Parking is available at the church. Call Nancy at 337-2467 for reservations by September 14th.

Ted Kroll Memorial Parkinson's Awareness Walk - The Presbyterian Home for Central New York is holding it's second annual Parkinson's Awareness Walk on Saturday, September 11, 2004. The walk will be held on the Presbyterian Home campus and will be wheelchair and walker friendly. Registration will begin at 8:30am and the walk will begin at 10am.
We encourage everyone to participate in the walk. You may form teams or walk individually. Get your friends and family to come and walk with you or support you by sponsoring you. You will be receiving a PAW brochure in the near future.
By supporting PAW you will be supporting Presbyterian Home's efforts to build a state-of-the-art Parkinson Disease/Movement Impairment Residence that will serve as a model nationally in the care and treatment of PD and other movement impairing diseases.
This year the Presbyterian Home has honored the Moylans and the McCaffreys by making them the honorees and Grand Marshals for the PAW. Be sure and come and join them for the mile long party and help make this an enjoyable event!

CNYPSG Symposium - Plans are underway for our support group to host a symposium on October 23, 2004. Nancy McCaffrey has graciously offered to chair the symposium.
Harts Hill Inn wil be the site and we are looking forward to having lots of people attend. If just our support group members all attended, we'd have at least 100 people.
The event will be from 9am to 3pm. Morning coffee will be served as well as lunch. The program is not completed at this time, but some physicians have already agreed to speak.
A "Celebration of Baskets Festival" will be held and a variety of baskets will be raffled off. Jo Schmidt has agreed to be in charge of the "basket fest." Some members have already offered to help her. Jo is looking for donations (new - not used) that can be brought to the July picnic or to the September meeting. If you have any questions, you can call Jo at 733-2414.

Medication Notes - Apokyn, a rescue drug for treating "Off" periods for use in Parkinson's disease is approved in the United States. Beginning in July 2004, Parkinson's patients who suffer from unexpected or sudden wearing-off spells will have a new and effective treatment option: an injectable dopamine agonist, apomorphine hydrochloride, or APOKYN.
This therapy, an injectable medication, will help patients rapidly reverse the sudden, disabling symptoms that can occur when anti-Parkinson medications suddenly stop working. In clinical trials, patients taking apomorphine during "off" periods showed marked improvement within minutes of the drug injection.
Apomorphine is meant for rapid, temporary relief of sever PD symptoms, and its effects last only about 30 minutes. In that interval, patients have enough time for their oral medications to resume working. It is not intended for chronic us.
For more information, call the toll-free number 877-7APOKYN or visit their web site.

Brunch Bunch Outing - On April 24, 2004, the Brunch Bunch gathered at Lupino's Trackside Inn for a delicious family style meal. Sixteen people came to enjoy the good food - and a good time was had by all! If you couldn't join us that time, think about coming to the next Brunch Bunch, that still hasn't been scheduled. We are always looking for new ideas for places to go, so just give us your idea and we will try it!

Hugging - Hugging is healthy: it helps our body's immune system, it keeps you healthier, it cures depression, it reduces stress, it induces sleep, it's invigorating, it's rejuvenating, it has no unpleasant side effects, and is nothing less than a miracle drug. Hugging is all-natural: it's organic, naturally sweet, no pesticides, no preservatives, no artificial ingredients, and 100% wholesome. Hugging is practically perfect: there are no movable parts, no batteries to wear out, no periodic checkups, has low energy consumption yet high energy yield, they are inflation-proof, non-fattening, have no monthly payments, no insurance requirements, are theft proof, non-taxable, non-polluting, and of course, fully returnable. "A hug, the strongest pain reliever available without a prescription!"

The Art of Compromise: Making It Work When the Going Gets Tough - by Barbara Bisio, M.A., and Jeff Shaw, Psy.D.
For many people, what begins as a romantic attraction leads to a long-term or lifelong relationship. Plenty of us have heard, or uttered, the words, "Let's get married." But wise souls who have weathered any kind of long-term relationship might suggest a slight rephrasing. Does "Let's get compromised" ring true with anyone?
We all recognize that successful relationships, romantic and otherwise, require giving, flexing and adapting in order to get along over the long haul.
Changing Places - No question about it, Parkinson's is life-changing. When a partner has Parkinson's, a relationship can become an even greater challenge - for both of you. In all likelihood, you'll each need to give up, or take on, new roles and responsibilities. (And you thought you were already compromising!)
Although you might assume it's more work to take on an extra activity like cooking, giving up such activities is typically more difficult from a psychological point of view. That's because giving things up can represent a loss of independence. And that's a hard pill to swallow.
More often though, both partners will experience resentment, anger and sadness about having to trade places. These frustrations can come out in a variety of ways.
For example, the relinquishing individual might find ways to criticize the way a job is done by the one who has taken on a new role. Driving provides a good illustration. Driving roles often shift when a progressive illness strikes. The challenge of having a new primary driver - and a new backseat driver! - is a formula for endless conflict. To add insult to an already challenging situation, the "new" driver (or cook or carpener or cleaner) might need to learn or relearn a skill in the presence of the more experienced partner.
Sometimes circumstances dictate that a non-working partner go to work when the other is no longer capable. In this and other instances of role reversal, both individuals are likely to experience conflicting emotions. It's debatable which is more stressful - the loss or the gain. But most important is how you deal with it.
Making It Work When the Going Gets Tough - Whether you're a person with Parkinson's, the partner of a Parkinson's person, or a family member or trusted friend who plays a caregiver role, here are some things to keep in mind.
1) Keep talking about these changes - with each [person] honestly and openly listening to how the other is reacting to the changes. Schedule 10 minutes a day - every day - just to check in with each other. You are entitled to be angry, sad or anxious - and so is your caregiver. Don't necessarily try to "fix" the feelings, but do acknowledge them.
2) Imagine how people feel having to give up tasks that have always been theirs, or to take on tasks that have always been someone else's - for example, cleaning, making repairs, doing laundry and mowing the lawn. These tasks might have been very important to that person, and their loss might elicit feelings of not being a "good provider." Again, don't make it your goal to "correct" the feelings expressed - simply empathize.
3) Remember, partners give to each other in a variety of ways. For example, if you can no longer manage the lawn mower, you might help in other ways, such as taking on a task you can manage and putting more effort into sharing gratitude and affection with your partner. Try to make a loss into a gain.
4) Prioritize. When you have limited energy and everything is harder, agree on what's most important. You would be amazed how commonly people with Parkinson's exhaust themselves cleaning the house each day, then find themselves too tired to take part in activities they truly enjoy - those social, restful, creative, interactive or quiet times that really nourish them. Make time for what's important.
5) The caregiver in the relationship needs some time alone and away from caregiving responsibilities. If you're a caregiver, be sure to ask for help from family, friends or neighbors when you need a break.
6) Keep in mind that pessimism "weighs" more than optimism. That is, each negative comment made about your partner takes about five positive comments to balance. Don't get in debt.
7) Above all, use your sense of humor. Whether it's you or your loved one who has Parkinson's, the disease will no doubt mean unwelcome changes to your life. But try to find the things in life you can laugh about, and then laugh about those things together as often as possible!
*Jeff Shaw is a neuropsychologist at the Booth Gardner Parkinson's Care Center in Kirkland, WA. Barbara Bisio is a doctoral candidate in clinical psychology at Seattle Pacific University and an intern at the Booth Center.
**This article is reprinted with permission from the Northwest Parkinson's Foundation.

First Impressions - by John F. Wrafter
A few weeks before the February 17th CNYPSG meeting, a fellow, aware that I was a PD patient, gave me a copy of the January issue of the "No Parkin' Zone" newsletter. I noted its upbeat tone, particularly Margaret F. Moylan's article "Persistence Pays." The article forcefully demonstrated the time-consuming processes that often face PD patients.
I marveled at the positive tone maintained throughout the newsletter and suspected that this same attitude prevailed at the group meetings and in the group dealings. I was not mistaken!
I attended my first meeting on February 17th. To say it was a most pleasurable and entertaining event would be an understatement. I was met at the door by Pat Moylan who immediately introduced me to his wife Marge, and Ed & Nancy McCaffrey. I exchanged notes with some of the attendees, particularly Chuck & Lois White of Boonville, and Hank Taylor of New Hartford.
Matt DiNardo, meteorologist at WKTV-Utica, was the guest speaker. Just in the nick of time, too, as Matt is moving for a better job within a couple of months to Richmond, Virginia. His talk was both entertaining and educational. It was obvious that he had a great deal of technical experience and an outgoing, pleasant personality plus a fine sense of humor. To top it all off, he is a good-looking young man, and I believe his star is rising - a good choice of a speaker for the group who seemed to be thoroughly enjoying his presentation.
CNYPSG business and the status of certain members, who were noteworthy, were later discussed by Pat Moylan. He made me feel as though I had earned celebrity wings as he called upon me to tell what had drawn me to the meeting. Pat will take a back seat to no one when it comes to M.C. duties.
The meeting then broke up for snacks, which involved some fabulous four or five tier cupcakes, fancier than any found in a gourmet cake shop. I was advised the baked goods were prepared by Jo Schmidt & Thea Matterese with help from her husband, John. The problem was that the cupcakes were such individual masterpieces, that I felt guilty biting into them rather than preserving them for decorating the house. As the snacks were being served, I met Barbara Barker, a home health aide who was caring for Frank Capcino. Both of them are my neighbors in Oneida. I also swapped a few jokes with Bruno Piretti, but couldn't even nearly match his "corn."
All in all, the meeting was a phenomenal success in my mind and I believe all attendees enjoyed themselves and benefited from it immensely. Thanks and kudos go to all those who arranged the meeting. So long as I am able, I intend to make every future meeting.

Welcome!
It is always a pleasure to have new people attend our group meetings. We are delighted to extend a big WELCOME to Amelia Iselo, Teresa Jones, Wallance & Elaine Kellogg, Don & Doris MacIntosh, and John Wrafter to our group. We hope you will all keep coming back and join in our activities.

Walter H. Dickson Awards
It will soon be time again to honor two outstanding members of CNYPSG for being outstanding role models as people with Parkinson's (PWP) and Caregivers. The Walter H. Dickson Memorial Awards will be presented at our annual picnic in July.
Each year we ask the membership to give us the names of people they think are deserving of the award. Please submit your nomination to a Board member by the May meeting. Members will vote on the nominees at the June meeting. Winners will be announced at the July picnic.

Teenage Generosity Alive & Well in Mohawk
At Jarvis High School in Mohawk the sophomore class project is to raise money for a nonprofit organization. This year's class, at the urging of class vice president Rachel Rice, chose the Parkinson's residence at the Presbyterian Home in New Hartford.
Rachel's interest in Parkinson's stems from the fact that her grandmother has it, so she has seen up close what PD can do to a person suffering from it.
Rachel's grandmother is CNYPSG member Jean Sterling. If you recall last year's Parkinson's Awareness Walk on the Presbyterian Home Campus [scheduled this year on September 11th], Jean's husband and Rachel's grandfather, Chuck Sterling, was the top individual money raiser for the day. I guess the "grandapple" doesn't fall far from the tree.
A big CNYPSG THANK YOU goes out to Rachel and the Mohawk sophomore class!
By the way, the top money raising group? You guessed it - CNYPSG, Inc!

Brunch Bunch Crunch
Did you realize that our Brunch Bunch activity is about to celebrate its 5th anniversary? Yep, that's right. Five years ago, on May 1, 1999, this brainchild of Nancy McCaffrey was kicked off at Denny's in Rome. In those five years we have had 14 gatherings of the Brunch Bunch in eleven varied locations in nine different cities or villages.
At the March meeting, someone asked, "When's the next Brunch Bunch?" We had no answer because no one had planned anything. Most of the planning for these outings has been done by the same four or five people. Some of us are getting sicker, most of us are getting more forgetful, all of us are getting older, and none of us is getting any smarter. Frankly, we could use some help.
How can you help? Check out the restaurants in your area. These are the things we need: 1) good wheelchair access [no steps], 2) wheelchair accessible restrooms, 3) ample space to accommodate about 35 people plus a few wheelchairs and walkers. A private room is nice but not essential. It is great if everything is served, but we can handle a salad bar or a buffet if we have to.
The important things are food, fun and fellowship. It's a chance to get together in a purely social situation - no program or meeting. It also gives an opportunity for the people who can't attend our monthly meetings, a chance to talk to others with PD. If you're willing to serve on a Brunch Bunch committee or help out in any way, please let us know. Call Nancy McCaffrey at 337-2467 or Marge Moylan at 866-3594. [Join the Brunch Bunch at 11:30 AM, April 24th, at Lupino's Trackside Inn, 401 Main Street, Utica, New York (by the Utica Train Station & the Children's Museum).

Vitamins & Herbs - What's Right for Me?
Many people with PD have questions about using vitamins & herbs as part of their treatment. How can you know what is safe and helpful, what is unnecessary or what may be considered dangerous? Here are 10 suggestions for anyone who is considering taking a vitamin or herbal remedy.
1] Talk to you doctor about what you are taking or thinking about taking, how much and why. Some herbs and vitamins can interfere with prescribed treatments, while others can be harmful in high doses or in certain circumstances.
2] Recognize that doctors are humans, too - with biases and beliefs. Some doctors believe there are only scientifically "proven" treatments, and may not make recommendations to use vitamins or herbal treatments, while other doctors are more open to alternative possibilities.
3] Know what you are taking. Read the labels, and be wary of anything that claims to treat everything from colds to cancer. If it sounds too good to be true, it probably is.
4] Take reasonable amounts of any herb or vitamin. Take only recommended dosages, and avoid excessive amounts. You can hurt yourself if you take too much of certain vitamins, while excessive amounts of other vitamins simply are excreted in the urine.
5] Note any side effects. Herbs and vitamins have substances that affect the body, just like the drugs that doctors prescribe. Just because an herb is labeled "natural" does not mean it cannot have bad side effects, as well as good effects.
6] Stay informed about Parkinson's disease research so you can make reasonable choices. Antioxidants such as vitamin E have been a focus of Parkinson's research in the past, although there still is no conclusive proof that it helps. Coenzyme Q10 and other substances currently are undergoing clinical trials.
7] Stop taking a treatment if it causes bad side effects, and contact your doctor.
8] Include your vitamins and herbs on the medication list that you report to your doctor.
9] Use common sense. Be wary of treatments that come in little plastic bags or packets with handmade labels. Contaminated herbal therapies have been reported to cause poisoning in humans.
10] If you decide to start herbal treatments or vitamins, do not stop taking prescription medicines that already are helping you. Stopping some medications abruptly can be dangerous.
Source: Satellite - A publication of Struther's Parkinson's Center, Minneapolis, Minnesota.

Take the Parkinson's Disease Quiz
About 15% of older adults suffer from depression. People with Parkinson's disease may experience depression as part of their illness. Caregiver stress also can trigger depression. Can you name some helpful strategies used to successfully treat depression?
1} Recognize that depression is not a normal part of aging. It is a medical condition that should be treated.
2} Talk to your doctor or a mental health specialist. Discuss your symptoms and seek a second opinion if they are not adequately addressed.
3} Check your medications. Some medications can affect your mood. Talk to your doctor about the medicines you are taking.
4} Limit alcohol consumption. Alcohol can cause depression, and combinations of alcohol and drugs may aggravate low moods.
5} Stay connected to friends and family. Share your feelings, and seek their support.
6} Participate in activities you enjoy. Modify tasks as needed if challenged by PD.
7} Join a support group. You may find it helpful to share with others who have similar needs and concerns.
8} Be active. Regular physical exercise can improve both mood and general health.
9} Eat healthy. Make eating a social activity. Talk to your doctor if you are experiencing changes in your appetite.
10} Seek caregiver support. If you are a caregiver, talk to a social worker or other community service representative to help find resources and help in your area.
Source: Satellite - A publication of the Struther's Parkinson' Center, Minneapolis, Minnesota.

Poetry Corner
Chase Away the Darkness - by Ed McCaffrey
The "Sands of Time" can wear you down,
Your body racked in pain you can't erase.
Don't let the arms of hypochondriasis engulf you
And squeeze you, 'til your life seems out of place.
Don't close down all you windows
And live your life in vain.
Open up the window to your heart
And let the sunshine in again.
So shed your "coat of worry."
Come back into our world and then,
Sing, be happy and add humor.
You'll have turned the lights back on again.

Think Spring!!

li>No Parkin' Zone - Volume 13, No. 1 - January 2004
Happy 12th Anniversary to CNYPSG! - by Marge Moylan
This month marks the anniversary of the group's first meeting in January 1992. Also, in July, we'll mark the 12th anniversary of our newsletter. From time to time over the years, we have belabored the fact that this is your newsletter and we would like to hear from you. We welcome "letters to the editor" and would be happy to print anything else that you would like to share. We have had a few people send us a joke, or poem, a coping tip, a recipe or an answer to a question - but we would love to see more of that.
You might be surprised to learn that NPZ goes to Canada as well as all over the United States, and our mailing list contains well over 500 addresses. If you want to share something with a big audience, here's your opportunnity! Send items to Marge glynnismoy@aol.com, or Nancy nancyomc@juno.com
Also on display in December was Grace, the Parkinson bear. We only had one and are still waiting for the rest of our order. Our bears name comes from the fact that this is a quality we Parkies tend to lack. Grace is a real beauty - a bean bag bear, light gray in color, about 8 inches tall - with a fuchsia ribbon around her neck, and the fuchsia Parkinson pin symbol embroidered on her front. Our bargain price is just $5 - and hopefully Grace will be available in January.

Persistence Pays! - by Margaret F. Moylan
The morning started badly. I woke up with a headache, not a killer, but an average headache, the kind that normally can be handled easily with a couple of tablets of an over the counter pain killer. I use the non-aspirin type, acetaminophen - the generic store brand. My supply in the kitchen cupboard was gone, so I reached for the new bottle I had purchased earlier in the week. The day began to go sour with my attempts to open this package, which was so well sealed for "my protection!"
I appreciate the concern of the manufacturers in safeguarding me against would be tamperers, but I think they have gone overboard. One or two safety devices seem sufficient to me. Are four really necessary?
First I struggled with the cardboard box, securely glued on either end. I managed that with no tools other than my fingers, which tend to be somewhat stiff and uncooperative in the early morning hours.
Next I was confronted with a well-fortified plastic bottle [I hope Fort Knox is this secure]. The immediate challenge was the invisible plastic strip around the lid. You know the type. At first you don't know it's there because you can't see it. When you finally realize that you can't unscrew the cap due to this piece of unassailable plastic with strength like steel, your hand is aching from the attempt. Out came the helpful kitchen tools. It finally yielded to my kitchen shears, but not without a fight.
The next hurdle was the childproof plastic lid, the kind you can open with ease if you happen to be a contortionist. Push down firmly and turn at the same time. I never was that coordinated, even when I was younger and stronger. I didn't count the number of tries it took, but after a prolonged battle, I won and the lid was off.
Relief for my headache at last? Oh, no - a foil seal stared up at me. I tried valiantly to peel it off. No luck. I couldn't seem to push it in, so I attacked with a paring knife. That did it. I had broken through. Next came the peeling process as I slowly removed bits of foil. And still no pills in sight.
Now that the pathway to the pills was clear, what met my eye was a very large wad of cotton peeking through a very small hole. Adult fingers are much too large for this removal operation. Finally, using a nut pick, I managed to maneuver, this way and that, manipulating and pulling just right, and the cotton was out. I could see the tablets.
Of course, by this time, the headache had escalated to garantuan proportions. I suppose I should be grateful for that fact - that I hadn't punctured myself with the nut pick or sliced my fingers with the knife. This entire procedure had taken just under thirty minutes. I'll bet a six year old could have done it in half the time.

Meeting Notes
Our annual Parkinson's Education Day was held on October 21st. It was our distinct pleasure to have Dr. Christopher Hyson from the University of Rochester as our guest speaker. Seventy people attended the gathering to hear his very interesting commentary on the "Non-motor Functions of PD." We extend our sincere thanks to Dr. Hyson for taking the time to speak to us.
Our Novermber 18th meeting had fifty people in attendance to hear Mary Wengert, Speech Therapist from the Presbyterian Home talk about the Lee Silverman Method of therapy. This method has proven to be a great help for people with PD who have voice problems. It was interesting to hear about some of her experiences using this type of therapy. We are grateful to her for sharing her expertise with us.
CNYPSG members and guests gathered on December 16th for our annual holiday party. Santa arrived in all of his finery along with his elf, Pete, and greeted everyone with candy canes. Everyone enjoyed the musical entertainment provided by Rev. Bruce Webster, Rev. Laurie Pauley and Jim Kehoe. Laurie accompanied the audience on the piano for the singing of Christmas carols and also sang a solo, "O Holy Night." Our thanks to all for sharing their talents with us! Some readings and "nonsense" were presented by Nancy McCaffrey. After the program, we all enjoyed the large variety of refreshments that were provided by the group members!

Welcome!
Lots of new people have joined us at our last few meetings, and we are delighted to have them all take part in our activities! We would like to extend a big WELCOME to all of the following people: Carol & Norman Burak, Linda & John Domagala, Dolores & Bruce Keeney, Art Langdon, Nunzio Melchiorre, Orrie Polacelli, Lois Rauscher, Dave Schallenberg, and Joan Spaulding. Here's hoping you all keep coming back!!

Our Brunch Bunch gatherings continue to be a favorite activity for many members of our group. This showed at our latest outing held at the Franklin Hotel in Rome on October 25th. Twenty-seven people came to enjoy the good food and the opportunity to get to know each other better. We were also delighted to see some of the people who are unable to attend our regular meetings. It was nice to see the Young family from Frankfort, and the Moffits from Clinton. We also got to meet Dave Schallenberg's wife, Lois. We hope you will all join us again on our next outing - or maybe even make it to a meeting.

Get Up and Go!
Many people with Parkinson's experience increased difficulty in attempting to rise from a sitting to a standing position. Here are some simple techniques to make this easier.
1. Choose a chair that has a stable base, adequate height, and firm upholstery.
2. Add a foam cushion, folded blanket or platform under the chair to raise seat height.
3. Use chair arm rests to aid you when standing.
4. Slide hips to edge of seat before attempting to rise.
5. Make sure feet are placed firmly underneath you before rising.
6. Lean forward - think nose over knees - when rising to stand.
7. Look down to the floor when rising to keep head and shoulders down and moving forward.
8. Rock back and forth to gain momentum prior to rising.
9. Consider using an electric powered chair if rising is particularly difficult.
10. Request a referral to physical or occupational therapy for assessment or treatment in improving chair transfers.
Satellite - A publication of the Struther's Parkinson's Center, Minneapolis, Minnesota.

Turning Over and Getting Out of Bed
Turning over and getting out of bed can be broken down into seven steps:
1. Throwing the covers back.
2. Shifting the pelvis into the center of the bed, to allow for turning and not falling out.
3. Turning the head.
4. Bringing the free arm acrosss the body, in direction of the roll.
5. Swinging legs over edge of bed.
6. Pushing up.
7. Adjusting posture into upright position.
Teaching a patient ways to enhance getting out of bed during the night is an essential task for the physical therapist. Patients frequently suffer from urinary urgency, and may have poor control of the muscles that prevent urination, due to the effect of medication on the nervous system. They may have to rise many times during the night. Independence in this task will help sustain a high quality of life, as well as not exhaust the caregiver. Other suggestions to assist in turning and rising from the bed include:
1. Use a slow-acting levadopa medication at night.
2. Keep a night light on, so vision can be used to guide movements.
3. Use a lightweight quilt, it is easier to throw back.
4. Satin or silk sheets and clothing will help reduce friction when moving.
5. Mentally rehearse the sequence before taking action.
6. Attend to details of each step.
7. Speak, or have caregiver speak verbal cues [for example: "shift pelvis," "turn head," "cross arm"].
8. Ensure that the height of the bed is not too low, as this makes the task more difficult.
9. Placing a commode at the side of the bed may keep the patient independent.
Parkinson's Disease UPDATE - Issue No. 135.

Wheelchairs Available
People suffering from a stroke or who have been diagnosed with arthritis, Parkinson's Disease, a respiratory disorder or any other condition that causes them to be unable to walk and self-propel a manual wheelchair may be eligible to receive a motorized wheelchair at no out of pocket expense. Those in need of a motorized wheelchair at home, and who are Medicare recipients can call 1-800-383-8435 for information and qualifications.

Parky Notes - from the Presbyterian Home - A message from Marge
After interviewing Mary Wengert, speech pathologist at the Presby Home, I decided to try the Lee Silverman Voice Treatment myself, or at least find out if it would help me. My first step was to get a prescription for it from my doctor. I requested one from my movement disorders neurologist, who was perfectly agreeable. However, a script from your family doctor would be just fine.
The next step was to see my ENT doctor - that's ear, nose and throat - or to be fancy about it, and otolaryngologist. This visit is necessary to rule out causes other than PD for your voice difficulties, for example, growths on the vocal cords. I was examined with a quick and perfectly painless process where the doctor put a small fiber optic tube down through my nose to see my throat. My doctor pronounced me perfectly fine for the therapy and told me to "go for it!"
The next thing was an evaluation by Mary to determine if I would benefit from LSVT. This took about an hour and included a lot of questions about my medical history. I also had to make a bunch of funny faces and read aloud the story of "The Three Bears," with feeling. Mary declared me a good candidate for the therapy, and we start in January. I will then be going for 50-minute sessions four times a week for four weeks. Stay tuned. I will let you know how it goes in the next newsletter.

Progress on the Parkinson Wing
In the last newsletter we reported that about $12,000 had been raised by the 1st Annual Parkinson's Awareness Walk. The latest total is closer to $18,000 - which gives Presbyterian Homes, Inc., enough to redo one room as a model. A number of people are working very hard to come up with the best solutions for accommodating this room to the needs of a patient with PD. This group includes an expert consultant with experience in the high tech applications, staff at the Home, and several members of CNYPSG.
You may have noticed in our last newsletter that Bob Luberda is now a resident of the Presby Home, having moved into the Elm Wing in September. Many of you know Bob. He is a charter member of CNYPSG, was our treasurer for years, and is currently on the Board of Directors. Bob was a banker until PD forced his retirement, but he kept busy with his church and his service clubs. I don't know if Bob belonged to every veteran's organization in Rome, but it seemed like it, and he was treasurer for most of them.
Bob Luberda has been added to the group from CNYPSG working on coming up with ideas for the model room. I guess you could call him our "on site" representative. We look forward to seeing this "model" up and running, with more to follow.

Video Report
The team of Taylor and Taylor - does that sound like a law firm or department store? - that's Hank and Rose Marie, have been very busy at our last three meetings videotaping the programs. Thus, we have the October, November and December meetings on tape - thanks to the Taylors. If you would like to borrow one of these tapes, call the Taylors at 315-732-6302 or the Moylans at 315-866-3594.

Ted Kroll Memorial Parkinson's Awareness Walk - Saturday, September 6, 2003
Plan to come to the campus of the Presbyterian Home of Central New York for the First Annual Parkinson's Awareness Walk. By supporting this walk you are supporting the efforts of the Presbyterian Home to build a state-of-the-art and technologically advanced Parkinson's Disease/Movement Impairment Residence that will serve as a model nationally in the care and treatment of Parkinson's and other movement impairment diseases.
How can you help? (1) Join the CNYPSG team: The Seymour Petrie Victory Team, (2) Sign up to sponsor a member of our walk team, (3) Start up a team of your own, (4) Come on September 6 to cheer the walkers on!
There's much more to do on the campus that day. The walk, which begins at 9 AM, is being done on the same day as the Home's Annual Fall Fest. It is part craft fair, part informational, and a lot of fun!
Walk Details
(1) Registration begins at 8 AM. You may pre-register or register that morning.
(2) There is a $20 registration fee per individual, or $20 per team. But if you collect enough sponsor money, that will cover the fee.
(3) The walk trail is completely wheelchair and walker friendly.
For further information, or to receive a PAW brochure and sponsor sheet, contact Joyce Palmer, Director of Development, at 272-2222.

Staying Positive While Living With Parkinson's Disease
Being diagnosed with a chronic progressive illness like PD changes your life forever. Don't give in or give up to the disease! These thoughts and observations should help you.
1. Learn about your illness.
2. Look for ways to reduce your stress level and put yourself and your needs first.
3. It may be difficult, but try not to be self conscious about the visible symptoms of your PD.
4. Keep your sense of humor!
5. Surround yourself with caring, loving, and nurturing family members, friends, neighbors and co-workers.
6. Tell people about your illness. Ask for their help when you need it.
7. Try to keep a positive attitude.
8. Set priorities and focus on tasks that must be done.
9. Allow extra time to do everything from eating, drinking, and dressing to walking, talking and writing.
10. Consider attending a local PD support group.
11. Understand that it is common to have fluctuations in your mobility and energy levels during the day.
12. Be willing to change the way you do things.
13. Ask your doctor to prescribe evaluations by an occupational therapist and physical therapist.
14. Always try out mobility equipment before you buy it.
15. Make exercise part of your life.
Source: "Parkinson's Disease: 300 Tips for Making Life Easier"

Caregiver Self Advocacy - Messages To Live By
(1) Choose to take charge of your life. Don't let your loved one's illness or disability always take center stage. We fall into caregiving often because of an unexpected event, but somewhere along the line you need to step back and consciously say, "I choose to take on this caregiving role." It goes a long way toward eliminating the feeling of being a victim.
(2) Honor, value and love yourself. You're doing a very hard job and you deserve some quality time, just for you. Self care isn't a luxury. It's a necessity. Self care isn't a luxury. It is your right as a human being. Step back and recognize just how extraordinary you are, and remember your own good health is the very best present you can give your loved one.
(3) Seek, accept, and at times demand help. Don't be ashamed to ask for help. When people offer assistance, accept it and suggest specific things that they can do. Caregiving, especially at its most intense levels, is definitely more than a one person job. Asking for help is a sign of your strength and an acknowledgment of your abilities and your limitations.
(4) Stand up and be counted. Stand up for your rights as a caregiver and a citizen. Recognize that caregiving comes on top of being a parent, a child, a spouse. Honor your caregiving role and speak up for your well-deserved recognition and rights. Become your own advocate, both within your own immediate caregiving sphere and beyond.
Source: National Family Caregiver's Association's Principles of Caregiver Empowerment

Check Out These Caregiver Web Sites!
National Family Caregivers Association
Caregiver.com
Parkinson's Control

Meeting Notes
The CNYPSG, Inc., Annual meeting was held on April 15, 2003. The membership elected John Matterese, Edward McCaffrey and Henry Taylor to serve a three-year term on the Board of Directors, Following the meeting, we were privileged to have Mary Lou Kunkel, RN, Program Director of the Rehab Program at Rome Memorial Hospital as our guest speaker. She described how this program teaches patients easier and safer ways to manage their activities of daily living. By taking advantage of this program, many people are able to return to their home instead of needing nursing home care.
Our guest speaker for our meeting on May 20th was Robert Stanton from the Social Security Office in Utica. His topic was "Identity Theft." He described some of the things that can happen when your Social Security number or your credit card(s) are stolen and what to do if this happens.
Tom and Katie O'Donnell, former members of our support group, and Dr. Bill Owens, a chiropractor, joined us for our June 17th meeting. They gave us an overview of several dietary supplements including Coenzyme Q10, and told us of their personal experiences with these products. It was a joy to have them back with us and to see Tom doing so well!
As always, our "super" Refreshment Committee kept us refreshed at each meeting! Thank you all!

Welcome!
It's always our pleasure to have new people attend our meetings. Joining us recently were Umberto and Gina Giannandrea, Gail Vanetten, Melissa Seaton, Joanne Seccurra, and Betty and Stanley Kowalski. We hope you all keep coming back! We look forward to your participation in our many activities!

Rochester Symposium
The Parkinson Support Group of Upstate New York and the University of Rochester will host their annual symposium on September 20, 2003 at the Radisson Hotel in Rochester. As in the past, CNYPSG will provide bus transportation at a cost of $10 per person payable to Nancy McCaffrey on or before that day. A Birnie Bus will be at the First United Methodist Church, 105 Genesee St., New Hartford, NY at 7 AM on September 20th. Parking is available at the church. Call Nancy at 337-2467 for reservations by September 13th.
The Symposium will start at 9 AM and close around 3 PM. Lunch will be included. On the way home, we'll stop for dinner at DEDE's Restaurant.
For those of you who have recently joined our Support Group, this is an excellent opportunity to learn more about PD, get to know us, and have a relaxing day out! Those of us who have been long time members of CNYPSG find that we always come home with new information.

The Seymour Petrie Victory Team
Seymour Petrie will be long remembered by CNYPSG. He was the perfect example of the never-say-die attitude so prevalent in this group. We therefore are dedicating our part of the PAW (Parkinson Awareness Walk) event to Seymour's memory and our memories of his persistence.
Seymour loved to walk and even after his PD was causing him to fall frequently, he still insisted on taking long walks by himself. These walks at times led to falls and problems but didn't dampen his enthusiasm one bit. In spite of the fact that he spent the last six years of his life at the Presbyterian Home, he was an inspiration to all who came in contact with him. Even though in a nursing home, Seymour took every opportunitiy to help out and encourage other Parkinson's patients and spread the word about PD.
Perhaps the most important legacy that Seymour has left to us is the part that he and his family played in the establishment of a separate wing for a Parkinson's residence at the Presbyterian Home. The Petrie family certainly raised awareness about PD at the nursing home, pointing out the special needs of Parkinson's patients. Had Seymour lived a few more months, he would have been the first resident on the Parkinson's wing.
Seymour Petrie was really the catalyst that resulted in the opening of a Parkinson residence in Central New York. It seems very appropriate that CNYPSG dedicate our efforts to the spirit of this man who gave so much. When we gather on September 6th, which just happens to be Seymour's birthday - Seymour - we're walking for you. This is your Victory Lap!

Park Bench Guest
I came to know our "guest" while attending a diversity workshop at a regional college in June, where participants were encouraged to share summer recipes.

Well, for one thing, we can celebrate the birthday of Dr. James Parkinson, which comes in April, on the 11th, I believe. This year he would be 248! After all, where would we be without him? A nameless crowd of drifters wandering around, wondering, "Am I the only one?" No, probably not. If not Dr. Parkinson, some other doctor would have come along and done the same thing eventually. We might be Smith's disease or Johnson's disease, or Piretti's disease. At any rate, we'd have a name. We can thank Dr. Parkinson for giving our disease a name, other than "shaking palsy," and for focusing attention our way.

Dr P.'s explanation of the disease came way back in 1817. But look at how far we have come since then. The disease has been diagnosed and treated for many, many years. But it wasn't until the discovery of levodopa in the 1960s that we had an effective treatment that really worked. Sinemet did not receive FDA approval for use for PD until 1970! That's only 33 years ago. When I was diagnosed in 1986, I was given Sinemet right off because that's all they had that really worked then. Now a newly diagnosed patient has choices! There are dopamine agonists (Permax, Mirapex, Requip); MAO-B inhibitors (Eldepryl); and COMPT inhibitors (Comtan). There are various types of surgery. Research on Parkinson's is headed in several different directions, two of those being stem cell research and genetic research. The amount of money being spent on PD research has increased dramatically.

What else can we celebrate? Of course, there is the disappointment of the NON-MERGER. But we can still be glad for the number of agencies out there working so hard for us, for an answer for us, glad for the legislative impact of PAN, and for the great fund raising abilities of The Parkinson Alliance.

Have we crawled any closer to a cure than where we were last April? I certainly hope so. But even if we are just inching our way toward our goal, at least we are MOVING, and moving together! The Parkinson's Unity Walk is a wonderful example of this. So, get ready to let loose and be happy!

Here is my challenge to you. Think of at least one good thing about having PD as part of your life. We all know the bad parts and focus most of our attention on those. We need to do that. Those are big problems confronting us. However, it is not all bad. A number of terrific things have occurred in my life not only since I came down with this disease, but BECAUSE I have it. Please think about it. Write down one happy experience or one good difference it has made for you. Then if you are willing to share, bring it to a meeting or send it to me (Marge Moylan), at 705 Ronald St. Herkimer, NY 13350, for the next newsletter. We will read or publish them, with or without name, your choice!

Trooper James Simpson from the NYS Police Station in Oneida was our guest speaker at our February 18th meeting. His most informative message included many valuable safety tips that can help to keep us safe both at home and when traveling. He described some of the many dangers that exist and how to deal with these problems if we should come upon them. If anyone is interested in purchasing any of the safety products that Trooper Simpson showed us , contact Nancy McCaffrey for prices and address.
We again divided up into two groups during our March 18th meeting. This is a time to share ideas on coping for both the people with Parkinson's and those of us responsible for caregiving. Many of our members have expressed their feelings that these times of sharing are the most helpful to them.

Walter H. Dickson Awards - It will soon be time again to honor two outstanding members of CNYPSG for being outstanding role models as people with Parkinson's (PWP) and Caregivers. The Walter H. Dickson Memorial Awards will be presented at our annual picnic in July.
Each year we ask the membership to give us the names of people they think are deserving of the award. Please submit your nomination to a Board member at the April or May meeting. Members will vote on the nominees at the June meeting, and as mentioned above, the winners will be announced at the July picnic.

The Cannonball - One Lap of America is a national auto race that goes from one end of the country to the other and back. This year the 2003 One Lap of America will start May 3rd in Watkins Glen, NY, travel to Indianapolis Raceway, Road America, Tulsa Speedway in Oklahoma, Memphis Motorsports Park in Tennessee, on to the Carolina's to the Carolina Motorsports Park, up to Pennsylvania to Beaver Run, and back to Watkins Glen for the finish. They race on nine different racetracks in 17 different events in 9 different states covering over 5,000 miles. Cars and drivers come from all over the United States, and some from Europe.

All through this race Jack Ireton's racecar - a Shogun - is covered with a giant decal reading "Driving for Parkinson's" at the Presbyterian Home, and the other race cars - approximately 90, have a smaller version of the decal on each side of their cars.

This is a wonderful opportunity to heighten awareness of PD and also to establish a model for the nation to follow in the care and treatment of Parkinson's disease and other movement impairing disorders at Presbyterian Home CNY.

Members of CNYPSG have been so delighted to work with the Presbyterian Homes of CNY in their efforts to develop a facility to focus it's care, therapy, and educational services on PD and other motor disorders.

The walk will be held entirely on the Presbyterian Home campus, and will be wheelchair and walker friendly. For more information, contact Joyce Palmer, Director of Development at the Presbyterian Home or Nancy McCaffrey at a CNYPSG meeting. Mark this on your calendar as a Fall project!

Panic is often your first reaction following a fall. How you react can cause more injuries than the fall itself. Trying to get up too quickly or in the wrong position may cause an injury.

Take several deep breaths, assess the situation, and try to determine if you are injured. If you seem to be injured - do not attempt to get up! If possible, call 911 or ask a family member for assistance. If you feel you are strong enough to get up, follow these steps recommended by the American Academy of Orthopedic Surgeons: (a) If you can, crawl to a strong, stable piece of furniture - like a chair, and pull yourself up, (b) Approach the chair from the front and put both hands on the seat, (c) Slowly, begin to rise, (d) Bend whichever knee is stronger, keeping your other knee on the floor, and (e) Slowly twist around and sit in the chair. Practice this procedure several times prior to actually falling.

A Bit of Wisdom - You don't stop laughing because you grow old, you grow old because you stop laughing.

Over these 11 years we've been to a lot of wakes and funerals and lost a lot of friends due to both the ravages of PD and to the wear and tear it places on the caregivers of PWP. However, we have also learned so much, not only about the disease itself and methods of handling it and tips for coping with it, we have also learned how important the support part of the group is. The caring attitude of CNYPSG has been there from the very start and its focus has never changed. I've always felt that people come to our meetings to see what we can do for them, but they come back to see what they can do for someone else.

The other day a friend told me of a colleague of his who is returning to this area and that his wife has Parkinson's disease. My friend immediately told the man that he had come to the right place. He said not only do we have the first Parkinson's living unit in the country (in the Presbyterian Home), we also have the best Parkinson support group in the world! That's us! Now that may be a bit of an exaggeration, but we are certainly doing something right. I want to start this new year with a big THANK YOU to the members and friends of CNYPSG who have made this group so successful. I love you all.

Just before her tenth birthday Jenni asked her mother if she could tell her friends that she would like money instead of receiving gifts. She wanted to give money to the PD wing at the Presbyterian Home in New Hartford, the local PD support group and to PD research. Jenni's grandfather, Seymour Petrie, had been a resident of the Presbyterian Home for a long time before he passed away.

When her sister, friends, and relatives heard about her birthday wish, she received many donations as well as those from her young friends and ended up with nearly $200.

What an inspiration this young lady is to the members of our support group! With the generosity of young people like Jenni, we can look forward to better days ahead for people with Parkinson's disease.

Guest speaker for our November 19th meeting was Joseph H. Maurer, a Sales Representative for MetLife. Joe's presentation included information about long-term care insurance and other programs available to help meet the needs of families in the future. Many thanks to Joe for giving us this valuable information.

December 17th was party time for CNYPSG members and guests. Santa arrived dressed in all of his finery with bells ringing accompanied by his helper, Peter. He gave his holiday greetings to all and talked to the children present. Rev. Bruce Webster, Rev. Laurie Pauley, and Jim Kehoe provided musical entertainment to everyone's delight. Laurie also accompanied the audience on the piano for the singing of Christmas carols. Nancy McCaffrey provided some readings and some "nonsense" before everyone enjoyed the large variety of holiday fare. "Mmm good!!!!"

The Brunch Bunch gatherings are strictly social occasions, and an opportunity for others to join us who normally are unable to attend our regular meetings. We were delighted this time to have several couples join us for the first time as well as some folks we hadn't seen in awhile. Another brunch is coming up on February 22nd; 11:30 AM, at Symeon's, 4941 Commercial Dr., Yorkville, New York - so try to join us for some good food and fellowship.

Hans and Stein were playing in their yard in Zurich when one of the boys accidentially swallowed a coin and started choking. Hans ran inside to get help, yelling "Mom! Dad! Come quick! There's a Franc in Stein!"

"Do you remember that terribly pushy woman with the attitude problem who lived in the apartment above us?" "Yes, what about her?" "She's marrying a doctor she met when she went in for X-rays." "Really...I wonder what he saw in her?"

My "on" persona is an energetic, very much in control individual. She takes charge, follows through, and carries out her plans. She handles many responsibilities with ease and wears many hats. Her name is Marge. She is support group corresponding secretary, as well as past president, newsletter editor, and Parkinson advocate. She is poet, essayist, national editorial board member, feature writer, features editor, whimsey editor, composer of songs, and magazine columnist. This "on" personality functions well as long as the dopamine is allowed to flow.

I believe I have now established the difference between "on" and "off" and it may seem simple enough to you. It's not. After taking the drug Sinemet for a few years, many people develop unwanted and annoying side effects including dyskinesia which is made up of awkward and uncontrollable body movements of the legs, arms, head, torso, tongue, or almost any body part that we normally control. These uncontrolled actions are not a part of the disease process. They are a side effect of the medicines. Some people never are bothered by them; others get them very soon after starting Sinemet. I fit into the latter category. My dyskinesias began after only six months of Sinemet therepy. Why not stop the drug then? Simple answer - without Sinemet, I can't walk at all. I'd be stuck in a corner somewhere, unable to move. So, it comes down to a matter of your doctor's skill at fine tuning your medications along with your ability to keep accurate records to make their job easier.

If I made no other point through this piece than this, please be aware of the different identities that we "Parkies" can have. Don't expect us to be always the same. Depending on the functioning of our medication, we can be very good or very bad. Please understand that sometimes I can open that door or get out of that chair, and sometimes that is an absolutely impossible feat for me. And those two states can occur within minutes of each other.

What can I say? That's the way it is with PD. The important thing is keep doing the things you enjoy as long as you are able. You will feel better about yourself. Also, you need to keep those muscles in shape for that cure which is, we all hope, just around the corner.

The feature speaker was Abraham Leiberman, MD, Medical Director of NPF, Inc. Dr. Lieberman gave a very interesting talk on "New Developments in PD." Other featured speakers included Peter Como, PhD, whose topic was "Coping with PD," and Howard Federoff, MD, PhD, who gave an "Evaluation of Gene Therapy for PD." The first speaker of the day was Samuel Frank, MD, who spoke on "What is PD?" Dr. Frank will also be speaking at our CNYPSG Education Day coming upon Tuesday, October 15. Those of you who were unable to make the symposium will have a chance to hear what he has to say, and to ask questions. The final speaker of the day was Frederick Marshall, MD, whose topic was "Deep Brain Stimulation." Dr. Marshall, who is now the neurologist on the DBS team in Rochester, gave a cautious view of the subject, pointing out all of the risks. He presented also a patient who has had DBS and the patient's wife for an interesting discussion of a patient's viewpoint of the surgery. Many questions were asked and answered, and a good deal of education went on that day. Keeping informed about PD and knowing about the many new things that are happening with PD are some of the best things we can do to keep that hopeful attitude which is so important to us all.

Kathy's poems have been featured in "Poetry Corner" in No Parkin' Zone from time to time since 1995 when I "met" Kathy through a Pen Pal column in a magazine called Joyful Noise to which we both used to submit.

To purchase a copy of "Healing on the Wings of Poetry," send a check or money order for $11.06 to: Kathy Foos, 325 North Court, Alpharetta, GA 30004. Includes postage and handling. All proceeds from this book, following expenses, will be donated to Emory Hospital Parkinson's Research.

Here is a sample from her collection.

The guest speaker at our September 17th meeting, was Utica attorney Mark A. Wolber. He discussed some programs available to low income families. He also emphasized the need for a "power of attorney" for business reasons, and a "health care proxy" is needed for decisions in health care. A "living will" has no legal significance in New York State. We extend our appreciation to Mr. Wolber for taking time to bring us this timely information.

We were pleased that Walter Pawlina joined us for our September meeting, and hope he will continue to join us on a regular basis.

The "M & M Show" has been on the road again. The Moylans and the McCaffreys traveled to Herkimer on October 18th and 25th, to speak to the employees of the "Country Manor" - Assisted Living residence. Our group has also been invited to participate in a Health Fair sponsored by the Fleet Bank at Horatio Mall in Utica on October 23rd. The "M & Ms" will present an informational program in the afternoon. We have also been asked to participate in a Health Fair at the Ava Dorfman Senior Center in Rome, on November 13th. Volunteers will be needed to help out at both fairs.

May, however, is going to be an extra special month for CNYPSG. We have our tenth anniversary celebration and opening of our "Hall of Fame" on Saturday, May 18th. Three days later at our regular meeting we are having an extra Education Day, with one of the Movement Disorders specialists from the University of Rochester School of Medicine as our speaker.

Irene Richard, MD, will be our guest speaker for May 21st. She is an Assistant Professor of Neurology and Psychiatry. Her topic will be "Depression and Parkinson's." Dr. Richard will be accompanied by her research assistant, Anne Justus, and they will explain about some of their research, and in particular, about the study they are doing on mood fluctuations in Parkinson's disease.

Tom O'Donnell and Walt Heugel will be there for this event, and we hope to have family members present for the five posthumously awarded inductees.

The price for the luncheon is $6.50 per person & can be paid that day at the door. If you prefer to pay ahead, you can mail your check to Nancy McCaffrey. The luncheon is at 12 Noon in the Social Hall of the New Hartford Methodist Church. The Methodist Church Women will be serving a family style luncheon of hot chicken salad, a green salad, rolls, beverages, and dessert. They are even making a special meatless casserole for those of us who don't "do" protein during the day.

If you are planning on coming, try to make your reservations early. We need to know by Friday, May 10th. No reservations will be accepted after that date. You can make your reservations, by phone or email, with either Nancy McCaffrey (337-2467; nancyomc@juno.com) or Marge Moylan (866-3594; glynnismoy@aol.com).

Tremors & muscle rigidity that accompany Parkinson's disease can make it difficult to cut and pick up food using forks, spoons, and knives. Conventional utensils can be difficult to grip, resulting in embarrassment and frustration that may lead to loss of appetite. Here are some useful suggestions.
� Use "non-skid" or rubber place mats that will help keep your plates and serving dishes from sliding.
� Eat foods that do not require cutting with a knife.
� Use a food processor to chop or shred your food after it is cooked.
� Ask someone to cut your food for you.
� Use large-handled utensils that are easy to grip.
� If you own specially adapted utensils, carry them with you whenever you plan to eat out.

[According to a team of Italian researchers reporting in the journal Psychosomatic Medicine, music may help Parkinson's patients not only stay limber, but move faster and feel happier].

� On my way to the park bench the other day, I came across an old teacher of mine, that through devotion to the "devine muse," inspired us all.

"I'm just a piano teacher", she said. "I tried to teach my students the beauty of creating. To liberate their tiny souls. Motion and rhythm itself can be an "invigorator" of freedom. Music can do that for anybody willing to listen to their heart."

"So too, can dancing. To watch, to enjoy, to perform - if simply in the imagination of your mind. All this can set free the physical and emotional constraints we daily live with, work with, and are very familiar with."

"Music can change what we are. Instead of wishes of darkness, we can see the "light" within ourselves, and others. Encourage your students, and yourself, to follow the beat. Enjoy and smile with the world about your - through music. Enjoy the "joy" of others - as they pick up a delcimer for the first time, or play a flute, or "tinkle" their fingers over the piano keys. Listen to those that sing their varied songs. We can all become "patrons" of the arts - in our hearts. To replace anger with beauty - fear with love - emotion with motion - however small."

And so, with a twinkle in her eyes, she ambled homeward.

Some patients, though, swear that a low-protein diet is so helpful that they can cut back on their medications and function fine; others say they really don't think it makes a difference. My feeling is that if reduced protein consumption can possibly help, why not try it?

I like to cook; I like to eat; and I don't like boring food...but even good vegetarian cookbooks haven't been helpful in this search for low-protein recipes. Many vegetarian cookbooks offer such a radical departure from what we're used to cooking and eating that average (over age 55) Parkinsonians and their carepartners are unlikely to enjoy or follow these strict diets. On the other hand, meats, fish, and poultry are almost pure protein. Dairy products like milk, eggs and cheese are also very high. Vegetable sources of protein like beans and peas are not as high as animal protein. We need some protein, but the average American diet has too much.

After just a small tantrum (Don't I have enough responsibility without having to relearn how to cook!?!), I got a grip and thought of a way to approach the matter without completely changing our diet. I would use substantially less meat, fish and cheese and combine them with larger amounts of carbohydrates and vegetables. Oriental, Italian and Mediterranean cooking have been inspirations for this approach. Herewith are some low-protein ideas for menus and substitutions:

Breakfast - Cereal, hot or cold (check labels for low-protein varieties) and serve with rice milk. Original flavor tastes just like skim milk but has only one gram of protein; the vanilla is sweeter. Serve with fresh or dried fruit, toast or muffin with jam and fruit juice. Put maple syrup on hot cereal for a treat. Pancakes or waffles are OK, but no bacon, ham or sausage. French toast is not as good an option because of the eggs. Even egg substitutes have protein.
Lunch - Lunches are harder because we are so used to sandwiches which almost always contain meat, fish or cheese. Sandwiches: Hummus comes in lots of flavors including garlic, herb and sun-dried tomato. Vegetable fillings like spinach-artichoke spread or roasted vegetables can be bought at a good deli, or you can make your own. Salads: There are many good salads available now in delis and supermarkets - pasta with fresh veggies, bean salads, roasted vegetables and Greek salads. Serve with good bread for a satisfying lunch.

Dinner - Dinner is the best time in the day to have a little more protein. Instead of serving a regular portion of meat with a starch (potato, rice or pasta) and a vegetable, though, I've started serving combinations of a small portion of meat or fish sauteed with vegetables and served on rice, pasta or potatoes. Penne Chicken Piccata: Top off penne pasta with a few lightly floured and sauteed chicken chunks combined with roasted red peppers, baby spinach and capers in a light lemon sauce. The chicken topping can all be done in one saute pan in about the time it takes the pasta to cook. Pasta with Marinara Sauce: Serve with a touch of grated Parmesan, a salad and garlic bread. Vegetarian Pizza: I use a Bobboli bread shell spread with garlic oil and topped with black beans spiced with chili powder and cumin, corn, canned jalapenos, roasted peppers and tomatoes, and a little bit of mozzarella cheese.
These are a few ideas to get you started. Think of what you like to eat and adjust the portions so that meat becomes a condiment rather than the main part of the meal, and add a salad ro bread.

++Getting enough exercise this winter? Join the Parkinson's water exercise class at the Rome Family YMCA. No swimming required. Call (315)336-3500 for details.

+ Give family members or friends specific suggestions on how to be helpful
+ Maintain your own health
+ Continue to go to church and social activities that are important to you
+ Carry on traditions that are comforting
+ Treat yourself to something every week
+ Consider changing your routine
+ Find a "hermit" spot
+ Acknowledge that feelings of anger, frustration and fatigue are normal for caregivers, especially for those in a long-term role
+ Know the difference between talking out problems with an understanding listener to relieve tension, and chronic complaining that only reinforces negative feelings
+ Learn to say "No"
+ Hire someone to help around the house
+ Talk with a nurse or social worker about ways to manage problem behavior of your loved one
+ Inquire about help through the area Office of the Aging, RSVP, or other community social service organizations
+ Try to maintain your sense of humor