THE ROCKY MOUNTAIN WHITTLER
Our Second Annual Wine Tasting, Coffee Tasting, Pepsi Product Tasting, Autograph Session, Live Music, hors d'oeuvres and
Thursday, September 18th
Lots of Details can be found on page 2 of this newsletter
Saturday, October 4th: Dr. Brian Grabert, Topic to be Announced. Caregivers or Parkinsonians, do you have any questions to ask Dr. Grabert?????? Bring them to the meeting or write them down and give to Diana Begin.
Saturday, November 1st : Breakout Sessions
Saturday, December 6th: Holiday Program To Be Announced.
But, what about the time until there is a cure? How do we cope with the day-to-day effects of Parkinson's? That is what our support group is for. We try to give you a place to exchange information and knowledge gained through experience. We try to be a social outlet and a forum to help each other. We are an advocacy for community awareness of what Parkinson's does to people and perhaps as important, what it doesn't do.
See you in September. Ric
Live music will be provided by the Blackwood Quintet, followed by “Dave the Horn Guy*” who's performed nationally on shows including “America Has Talent”.
Some interesting items for the Silent auction include dress socks worn by Baseball Hall of Famer Goose Gossage, an enhanced print from renowned Pueblo artist John Mendoza, who lists it as a one-in-a-series-of-one, a seven-day getaway at a luxury home on the Hawaiian island of Kauai, family entertainment packs, signed DVDs from the movies “Rudy” and“Miracle” and CD of comedian Lewis Black, Cakes from the top hotels and restaurant, and the list goes on! The auto-graph session lineup is awaiting confirmation, but hopefully former football players Barry Helton*, Randy Gradishar*, and Figure Skating Champion Jill Trenary* are those we're hoping for (*subject to change).
There will be a cash bar. Don't miss this totally fun fundraiser. Tell your neighbors and friends! You can park on the street or use the parking lot between the Pikes Peak Center and the old Sun Newspaper building that we've arranged for.
If you would like to volunteer to help the night of the fundraiser, please give a call to Gary Street, 638-8622.
The following is a synopsis of our meeting with Dr. Ira Rosenbaum on June 13th :
How do we respond to constant complaints? Or comments coming from depression? Expressions of deepest fears or desires? How do we handle anger when it comes our way? How do we make our wishes known, especially when they conflict with the wants of the other person? How do we bring up “touchy” subjects, ones we fear will be received with suspicion or weariness (“Here we go again”), if not anger. We worry that our comments will be perceived as threatening or controlling or critical or unloving or insensitive or cruel. We don't mean our questions or comments to be any of those things. We pose them out of deep concern for our spouses' well-being as well as our own. Too often we drop a subject for fear of offending, annoying or irritating the other person. But we all know it's not healthy to live with these concerns unexpressed either. So we dither and delay and these topics, of great importance to us, may never see the light of day and issues go unresolved.
Here are several suggestions made by Dr. Rosenbaum, certainly worth trying. First, choose your moment with care. Don't spring a difficult subject on your spouse or friend when they're depressed or overdue for a Sinemet. Start with an endearment : “Honey…” and follow up with a plea for cooperation.., “ I have a problem that I could use some help with.” Keep the tone light. You don't want to make your partner overly anxious for what might be a minor problem. This approach makes it more likely that the other person will respond in a pleasant and constructive manner.
Keep in mind that your spouse is often not feeling well. This may account for their inattention or resistance.
Don't assume anything. As caregivers we tend to solve problems on our own; it's easier. It takes time to talk things through and sometimes we don't want to take the time. We make assumptions about what's going on in the other person's head and act on those assumptions. Again, don't assume anything. Always take time to inquire about their sentiments or opinions. You might be surprised at the answers you get and for sure you will avoid making a wrong move. At the least you are not taking control away from someone who perhaps feels many of life's decisions, big or small, are no longer theirs. Keep in mind that the goal for both of you is to end up in a better place.
This is a large topic and our understanding of it is crucial to day-to-day living with a person coping with a chronic illness. Dr. Rosenbaum shifts our perspective and helps us look at our situations in a different way.
Parkinson's disease, marked by symptoms such as muscle tremors, rigidity and slow, uncoordinated
"It's a good thing to have sex, a good thing to eat, a good thing to be risky," said Celeste Napier, professor of pharmacology at Rush University Medical Center. "But if these natural good things get exaggerated by having so much dopamine in critical parts of brain, that may enhance impulsivity and compulsive behaviors."
But other researchers caution that the brains of Parkinson's patients are changed drastically by the disease, and the link between dopamine and compulsive behaviors may not be so clear-cut in the general population. That only a subset of Parkinson's patients on dopamine agonists develop behavioral addictions also suggests the presence of unknown factors that make certain brains more sensitive to the drugs than others.
"The whole issue of how Parkinson's disease presents the biology of this is not clear yet, but it really provides a fascinating neurobiological angle," said Dr. Un Jung Kang, professor of neurology at University of Chicago.
The study, which looked at more than 3,000 patients from 46 medical centers in the United States and Canada, found that Parkinson's patients on dopamine agonists are nearly three times more likely to have at least one impulse-control disorder compared with patients receiving other treatments.
But while neurologists agreed that drugs such as Mirapex have helped thousands of people with Parkinson's control their symptoms, the occurrence of such severe behavioral side effects have made them cautious about their use.
Because many patients don't associate their new habits with the drug, or might be embarrassed to bring such problems up with their neurologists, some doctors now ask patients and their families about compulsive behaviors as part of routine patient checkups.
1. Respite Care. Being a caregiver can be tiring or stressful, and can make it difficult to get out of the house to do things a caregiver needs or wants to do. An average of $1000 per family per year is available to 10 caregivers per year (until the funds for this grant run out) to help pay for an outside caregiver to watch their loved one while they attend support group meetings or other support group events such as the symposium, or even if they're just at the end of their rope, want to get out and see a movie or do something with a friend, etc.
To apply for this grant or get more information, contact Julie Pfarrer at 495-1853.
3. Counseling. Switzer Counseling Center, part of the University of the Rockies on 555 E. Pikes Peak Avenue, has counseling available to our members who would like some help dealing with the psychological issues of living with Parkinson's Disease.
In the past, Switzer has offered sessions for minimal cost ($0 to $15) depending on your ability to pay. However, with the changeover from Colorado School of Professional Psychology to University of the Rockies, we are not certain if the same terms apply. It would be best for you to contact Switzer Counseling Center directly (442-0606) to ask about the current terms of their counseling.
Colorado Parkinson Foundation, Inc. (
www.co-parkinson.org
The Jeanne Taylor Parkinson's Support Group (part of CPF) meets the first Saturday of each month at 10 AM monthly (except January & July, other exceptions to be noted in The Whittler) at Otis Park Community Center 731 N. Iowa St (at Dale St). Meetings followed by potluck lunch. Other useful websites: PAR (Parkinson Assn. of the Rockies)
www.parkinsonrockies.org
SEPTEMBER 2008
NEXT MEETING:
Saturday, September 6,, 2008
Otis Park Community Center
731 N. Iowa (at Dale)
Meeting starts at 10:00 AM. Please try to be there at 9:45 to sign in, look over publications and say hello to other members. Following the meeting and breakout sessions, we will have a pot luck luncheon with meatloaf as the main dish, provided by Jill Reid. . Please bring a side dish or dessert. If you cannot bring a dish, come anyway and enjoy the fellowship.
Jeanne Taylor Parkinson's Support Group Presents:
Silent Auction Spectacular!
6:00 pm to 8:00 pm,
Pikes Peak Center Lobby, 190 South Cascade Avenue
$15 ADMISSION
PROGRAMS
Diana Begin
Saturday, September 6th: Breakout Sessions
THOUGHTS FROM THE PFAR-SIDE
Ric Pfarrer
This moment finds me in Georgia at a family reunion to celebrate my parents' 80th birthdays. A natural question that I get from all of them is about the current research progress and how can they help. I tell them about the work that Dr. Marks is doing in San Francisco and that Dr. Freed is doing in Denver. That seems to give them hope that I will see a cure for Parkinson's someday.
What does our support group mean to you? Are you willing to help others? Do you have time to donate to making the support group work? We need your help to keep the services that have been provided to you available to the next generation of newly diagnosed Parkinsonians. The past few years have depleted the ranks of active volunteers by deaths, advancing stages of Parkinson's, and burn out. The support group, because of the progressive nature of Parkinson's, is a “pay it forward” organization. If you are a caregiver or Parkie who has the ability to help maintain the support group, please raise your hand and volunteer. We are an all-volunteer organization and depend on each other to keep the group going. You can make a difference.
SILENT AUCTION/WINE TASTE FUNDRAISER SPECTACULAR
SEPTEMBER 18TH, 6-8 PM
PIKES PEAK CENTER
CHAIRMAN: GARY STREET
This is our “Second Annual Wine Taste, Coffee Taste, Pepsi Product Taste, Autograph Session, Live Music, hors d'oeuvres and Silent Auction Spectacular!.” The event promises to be a slightly different take on the standard wine tasting.
ADDITIONAL SUPPORT GROUPS
Eastside Caregivers' Group: We will meet this month on Friday, September 19th from 2:00 PM to 4:00 PM at Mary Kellerhals, 4640 Poleplant Drive (Phone: 574-9205). Future meetings: October 17th at Diana Begin's and November 14th at Donna Deis' house.
Westside Support Group: The Westside Support and Resource Group meets the third Friday of every month except December beginning Friday, September 19th at 10 AM at the Broadmoor Community Church, 315 Lake Ave., 80906. The meetings usually last an hour and a half. Caregivers meet in one room and patients in another. This month Bill Hudson will moderate the patients' group and Dr. Ira Rosenbaum, clinical psychologist, will meet a second time with the caregivers to once again address our questions about communicating effectively with our Parkinson patients.
Participation is not restricted to those living on the west side of town. If you haven't come to our meetings before call Pat Hudson (520-1154) for directions or just come.
The Art of Communicating with
Those Closest to Us
On June 13 Dr. Ira Rosenbaum, clinical psychologist, met with caregivers from the Westside. Normally Dr. Rosenbaum facilitates the patients' meetings; this time was the caregivers' turn to make use of his expertise. The topic: how to communicate better with people who share our lives. In this case it was spouses but it could just as easily have been very good friends or employees.
Drugs [dopamine agonists] calm Parkinson's but ignite odd actions Robert Mitchum
www.chicagotribune.com
Rothwell, who said she had never gambled and had been careful with her money before starting Mirapex, began compulsively spending $200 a day on scratch-off lottery tickets and making irrational purchases such as 100 tubes of lipstick. The habits escalated so rapidly that she ran through more than $70,000 in two years.
"It was night and day-there was another person there," said Rothwell of Westfield, N.Y., near Buffalo. "I was manic to the point where there was another person inside of me. I knew that I could not do anything about it, I had no control whatsoever, and I'm a control freak."
Neurologists have long observed dramatic changes in the behavior of patients receiving treatment for Parkinson's disease, with some developing gambling problems, heightened sexual interest or compulsive spending and eating habits where there had previously been no sign of such disorders.
Now, the largest study ever conducted on the phenomenon has found that more than 13 percent of patients taking a particular class of drug called dopamine agonists, sold under brand names including Mirapex and Requip suffer from at least one of four serious behavioral addictions.
The results, presented in June at the International Congress of Parkinson's Disease and Movement Disorders conference in Chicago, could change the way neurologists choose to treat certain patients with movement disorders such as Parkinson's.
But the observation that a drug may trigger dramatic behavioral changes in some people-changes many said switched off almost immediately when they stopped taking the drug-also offers new evidence that issues such as gambling and shopping addictions have roots in the balance of chemicals in the brain.
"It offers a real window that's hard to duplicate in other populations; it's hard to make a gambling problem or an eating problem go away relatively quickly," said Dr. Daniel Weintraub, assistant professor of psychiatry at the University of Pennsylvania and lead author on the study. "I think this research really opens up a lot of interesting questions, not only for Parkinson's disease but perhaps for the general population as well."
movements, results from the depletion of the neurotransmitter dopamine in the brain. So most drugs given to Parkinson's patients are meant to replace the missing dopamine and restore normal motor function.
Yet dopamine controls more than motor function. It also plays a role in the brain's response to rewards such as eating, drugs and sex. Powerfully activating the dopamine system with drugs could cause people to find such stimuli more rewarding than normal, inducing them to repeat behaviors to the point of physical or financial harm.
The study was funded by Boehringer Ingelheim, the German pharmaceutical company that produces Mirapex, one of the most commonly prescribed drugs for Parkinson's disease. Kate O'Connor, spokeswoman for the company, said that warnings about the potential development of compulsive behaviors have been included with the drug's package insert for several years. The drug received FDA approval in 1997.
"We do feel we are already making people aware so they can watch for any such behavior in patients, so that choices can be made about treatment," O'Connor said. "There is nothing about the study that told us anything should be changed in the way the drug is used."
Dr. Eric Ahlskog, a neurologist at the Mayo Clinic who has treated Parkinson's patients for 25 years, said he no longer is comfortable starting patients on dopamine agonists after three patients in his practice last year developed significant gambling and sexual problems.
One patient, a middle-age man, suddenly began expressing hypersexuality and was arrested for publicly exposing himself.
"If you get hit in the head often enough, you learn to look up," Ahlskog said. "You realize it's such a tragedy. Whatever good they get from the drug is overshadowed by these tragic developments in their life."
Other neurologists said they won't stop prescribing dopamine agonists but have started using smaller doses and closely monitoring patients for the onset of harmful addictions.
"Some patients think they're morally weak people. They think it's their fault," said Dr. Kathleen Shannon, a neurologist at Rush University Medical Center. "I sometimes really have to convince people it's the drug. But as soon as people come off of it they realize have a whole different feeling about gambling . . . it's really an amazing observation."
Cindy Horn of Bloomingdale said she didn't associate the drug she was taking for her Parkinson's symptoms-Requip, manufactured by GlaxoSmithKline-with any behavioral issues until her doctor asked about her spending habits.
The question made her realize that her spending had spiraled out of control while on a high dose of the drug.She spent nearly $30,000 and maxed out several credit cards on what she now recognizes were irrational, impulsive purchases of clothing, appliances and vacation packages. "Instead of buying just one, I would buy 10," Horn said. From NW Parkinson's Foundation
COLORADO PARKINSON FOUNDATION, INC.
GRANTS AVAILABLE TO JTPSG MEMBERS
This is a reminder that funds and low cost services are available to our support group members to help them with some of their needs in relation to Parkinson's Disease:
2. Transportation. Members who have no other way to get to regular meetings, Eastside or Westside Caregiver Groups, symposiums, JTPSG picnics, etc., can have the cost of their transportation to these meetings paid for with Colorado Parkinson Foundation's transportation grant. Members can be reimbursed the fare for their Metro bus, Springs Mobility bus or taxi. Or, if you contact Julie Pfarrer (495-1853) a day or so prior to the regular meeting, she can pay your fare once you arrive at Otis Park. Please note that although Springs Mobility is probably the best way to get to the meetings, you must first register with them before you need to use it, and you must make your own reservation with them. Call David Benson of Springs Mobility at 268-0984 to register if you are interested.
UPCOMING EVENTS: See Inside for Details
September 6 Regular Meeting, 10 AM, Otis Park, Program: Breakout Sessions
September 16 JTPSG Board meeting, 3:30 East Library
September 18 SILENT AUCTION/WINE TASTING SPECTACULAR, Pikes Peak Center, 6:00PM-8:00 PM
September 19 Westside Support Group, 10:00 AM, Broadmoor Community Church, 315 Lake Avenue
September 19 Eastside Caregivers 2-4 PM at Mary Kellerhals
October 4 Regular Meeting, 10 AM, Otis Park, Program: Dr. Brian Grabert
November 1 Regular Meeting, 10 AM, Otis Park, Program: Breakout Sessions
Exercise classes with Barbara Willis meets on Thursdays at 10:30 am at Spectrum Rehab, 8TH Street and Arcturus.
