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Parkinson’s Awareness
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By Christine Bothmer
n the last Tuesday of each month, a small group of people meet to share stories and ideas for coping with Parkinson’s disease. This is the Parkinson’s Support Group, a sharing group of about a dozen or more people who get together to share their stories, frustrations and triumphs regarding the diagnosis and symptoms of Parkinson’s disease.
April is Parkinson’s Awareness Month How is Parkinson’s treated? What is Parkinson’s disease? For people with Parkinson’s, nerve cells in the brain do not produce enough of an important chemical, called dopamine, which transmits signals between cells in the area of the brain responsible for coordinating movements. Without enough dopamine too many muscles remain tense, interfering with all sorts of movements such as walking, swallowing or even maintaining balance, blinking, or creating facial expressions. Symptoms are subtle at first, and for some the disease progresses slowly while for others symptoms become more problematic over the years. While it generally affects people 50 years of age and over, some people develop Parkinson’s at a younger age. It is estimated that one million people in the United States have Parkinson’s, but it is hard to measure because with no definitive test for the disease it can be difficult to diagnose. Scientists are researching the possible causes of Parkinson’s; likely culprits include head trauma, genetic susceptibility, free radicals (harmful substances either absorbed or produced by our own bodies) and, according to the UCLA Department of Neurology, exposure to some pesticides. The most common Parkinson’s symptoms: • Slowed movements • Rigid or stiff body, including arms or legs • Slow, rhythmic resting tremor (may affect limbs or face) • Difficulty maintaining balance or coordinating movements
Until there is a cure, treatment focuses on managing the symptoms.There are several different classes of medications used to treat Parkinson’s symptoms, but some of the medicines can have serious side effects. It is very important to keep track of symptoms and inform the healthcare team of any changes to symptoms and overall health. Jerry Storm, a Kaua‘i resident, has lived with Parkinson’s for over 20 years. When faced with worsening symptoms and the increased side effects that come with increased doses of medications, Jerry opted to have a deep brain stimulator (DBS) surgically inserted. It consists of a small transmitter and a wire that is threaded to a specific location in the brain. Jerry has had his DBS for about 7 years and was amazed how quickly it worked. With the help of his doctor, the medications and DBS are adjusted to provide the best results with the lowest possible dose of medicine. Physical activity can help alleviate symptoms as well. Jerry advises people with Parkinson’s disease on the benefits of exercise and to keep moving: “Like [Bob] Dylan says, ‘keep on keepin’ on,’ you’ve got to keep moving. If you just sit on the couch watching tv all day, that’s on you.” Many experts agree that exercise is a crucial component to managing Parkinson’s symptoms. Beyond the benefits of improving coordination, maintaining strength and digestive regularity, research indicates that intense exercise slows the progression of the disease by helping the brain use dopamine more effectively. While intense exercise may not be an option
Cover: Play Ball! Peter Rayno, coach of the Hanamaulu Hillsiders, heads to first base while his teammate scores a run. The season is underway for the Kaua‘i Senior Softball League, which boasts eleven teams from around the island. Check out a game this weekend! The schedule is posted on our website at www.elder-resource.org.
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Elder Resource
Magazine
Printed in Hawaii
Editor & Publisher Christine Bothmer, RN Graphics & Design Julie Bothmer-Yost Artistic Consultant Judith Lee Contributing Writers: Rose Murtagh, Deborah Duda, Cullen Hayashida Contact Elder Resource Mail: P.O. Box 1257, Koloa, HI 96756 Email: cbothmer@elder-resource.org Phone: (808) 212-2760
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for those with advanced Parkinson’s, everybody benefits from physical activity. Check with your healthcare provider for activities that are safe and effective for you. In addition to running the Parkinson’s Support Group, Jerry’s wife Susan is the assistant director of the Parkinson’s Action Network. Based in Washington D.C. their mission is to advocate for legislation on the behalf of people with movement disorders and their caregivers. She invites people with any movement disorder and/ or caregivers to attend the Parkinson’s Support Group. For Susan, the support group not only helps people figure out how to live with a movement disorder, “it also brings humor and unites caregivers” in ways you can’t imagine until you join the group. If you’d like to attend the Parkinson’s Support Group call Susan at 212-1250. Tips for caregivers of people with advanced Parkinson’s: • Allow plenty of time for activities. Let the person do what is safely possible; be available to help. An occupational therapist can recommend techniques and equipment to promote independence, ask their healthcare provider for a referral. • Eating is a social occasion for many so have your meal or snack at the same time in a pleasant setting. Small, frequent meals are less tiring; soft or tender foods cut into bite-sized pieces are easier to eat. Follow the diet recommended by their healthcare provider; ask if liquids should be thickened for easier and safer swallowing. • Never offer a drink or food to somebody in a reclined position if they might have trouble swallowing; it could go into their lungs and cause pneumonia. Some signs a person might have trouble swallowing: coughing during a meal or having the sensation that something is stuck in their throat. Report these or any changes to their healthcare provider.
The material contained in this magazine is for educational purposes only and is not intended to replace the advice of your doctor, nurse practitioner, or physician’s assistant. Talk to your healthcare provider before making any changes to your healthcare regimen. All rights reserved. Permission is granted to reproduce portions of this magazine for educational, non-commercial purposes only; please give credit to Elder Resource including date of issue and mailing address. All photos by Christine Bothmer unless otherwise credited. Advertisement in Elder Resource does not necessarily imply an endorsement of products or services. Check out these websites for more information We respectfully decline advertisements www.ParkinsonsHawaii.org whose purpose is to influence public www.MichaelJFox.org opinion on controversial issues or the www.parkinson.org outcome of elections or ballot measures.
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Contributed Photo: Susan and Jerry Storm. Meet them at the Parkinson’s Support Group. See page 21 for dates and times.
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Vernie’s Dancers entertained residents at the Kaua‘i Care Center in Waimea recently. Below: Mary Jane Burger dances to Boot Scootin’ Boogie. Facing page clockwise from top: The group warms up to Sugar Pie Honey Bun; from left Merle Spence, Sanae Morita and Joanna Kaui cha-cha to Stand By Me; Vernie Sakaguchi swinging to All I do is Dream of You. Vernie teaches line dance at the Lihu‘e Neighborhood Center. Visit your local neighborhood center to see a full list of activities you can join. It’s a great way to stay active! See page 23 for contact info.
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Chair Stand Exercise TARGETED MUSCLES Abdomen and thighs
WHAT YOU NEED Sturdy, armless chair
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his exercise, which strengthens your abdomen and thighs, will make it easier to get in and out of the car. If you have knee or back problems, talk with your doctor before trying this exercise. 1. Sit toward the front of a sturdy, armless chair with knees bent and feet flat on floor, shoulder-width apart. 2. Lean back with your hands crossed over your chest. Keep your back and shoulders straight throughout exercise. Breathe in slowly. 3. Breathe out and bring your upper body forward until sitting upright. 4. Extend your arms so they are parallel to the floor and slowly stand up. 5. Breathe in as you slowly sit down. 6. Repeat 10-15 times. 7. Rest; then repeat 10-15 more times. TIP
People with back problems should start the exercise from the sitting upright position. www.nia.nih.gov
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Tips to Ease Mobility with Parkinson’s Disease
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By Rose Murtagh, PT, MPH, ACE-CPT, CHC
s Parkinson’s Disease progresses a person may experience muscle stiffness, rigidity, difficulty with coordination and decreased balance. Getting up from bed, walking or dressing may become more difficult. When walking, feet can feel stuck to the floor or shuffle faster and faster, causing a loss of balance. Here are a few tips to keep moving safely: Getting up: • To get up from the bed or chair, sit at the edge and keep feet flat on the floor. Counting and gently rocking 3-4 times will create the momentum needed to stand. Walking: • Lift knees high as if marching. This will loosen legs & “unstick” feet. • When feet get stuck, sway gently side to side to relax the legs. As weight is shifted to one leg, lift the other leg to take a step. • A change in the flooring surface, carpet designs, or even doorways can be visual barriers. Some may experience difficulty walking through these areas. Keeping flooring consistent will help. If that is not possible, marching will help to continue walking through the barrier.
To maintain range of motion, practice large motions: Sitting: • Raise and lower arms, keeping arms relaxed and moving as far as possible without straining. Breathe in as you raise arms; out as you lower arms. Repeat 3-5x. • Hug yourself. Reach arms out to the sides as far as you can, then hug yourself. Breathe in as you reach wide; out as you hug. Repeat 3-5x. • Sit up straight reaching arms up overhead then slowly bend forward to reach toward your toes. Inhale reaching up; exhale bending forward. Repeat 3-5x. Standing: • Hold a sturdy chair, countertop or railing for support. Rise up on your toes 5-10x, or squat 5-10x. • March in place 10-20 steps.
Editor’s note: If you have had recent surgery, have a medical condition or are at risk for falling check with your healthcare provider before starting a new activity.
Contact Rose (808) 346-7520 www.movinon2wellness.com
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Are You Aging? If So, Prepare for Falls
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By Cullen Hayashida
alls are among the most common problems facing older adults. They are an epidemic, raising alarms within the State Department of Health. A special task force was convened to better understand how widespread the problem is and what we can do about it. • 1/3 of all older adults over age 65 fall annually. At age 85, 50% or ½ will fall! • 60% of all Emergency Department visits by older adults are due to falls in or around the house. • Among older adults, falls are the leading cause of hospitalization and death from injury. Long Lie Time--A Real Danger If you can’t get up after a fall, you won’t be able to eat, drink, take your medicine or get to the bathroom. Besides a fractured bone, other medical problems begin to appear quickly: pressure sores, hypothermia, pain, dehydration, and even death can occur. These medical problems result in hospitalization or nursing home placement and possibly loss of independence, decreased quality of life and increased stress on the family. The financial cost can be enormous. Take falls and ways of preventing falls seriously! To prevent falls, first take the time to understand your health condition. Diabetes for example can cause the loss of feeling in your feet. Drink water regularly to avoid dehydration which can cause dizziness. Have your vision checked annually.
Second, review your medications with your physician or pharmacist. Some medications individually or in combination can cause sleepiness, dizziness, and/or low blood pressure. Third, stay physically fit so you will be better able to stay upright, have faster reflexes and reduce injury. Finally, make your home safe. 50% of all falls occur at home. Remove throw rugs, clutter, and electrical cords from pathways. In the bathroom install grab bars, a shower seat, bath mats, night lights and a raised toilet seat if the toilet is too low. Fall prevention measures are said to reduce falls by about 30 percent. While important, falls will still occur 70% of the time. Fall prevention is necessary but may not be enough. Key: Finding Ways to Seek Immediate Help If fall prevention is only partially effective, then it is important to think of ways to access immediate help to prevent a small problem from transforming into a medical disaster. A whistle or a cow bell could work but not everyone will pay any attention to the noise. A more effective way is a medical alert, also known as a Person-
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al Emergency Response System (PERS). A PERS has three components: a Call Button worn around the neck or wrist, a Receiver Base Unit connected to the telephone line and a Remote Call Center accessible all the time. While there are many different companies that provide this service, it may be a good idea to find one that can provide local servicing rather than a national company that ships the equipment for you to install yourself. This service and equipment is affordable and reliable. Check to see if your long-term care insurance or Medicaid will cover this expense. Cullen T. Hayashida Kupuna Monitoring Systems www.kupunamonitoring.com Phone: 808-721-1201
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Mardi Gras! Kaua‘i Senior Clubs celebrated their annual Valentine’s Day Dance Mardi Gras style at the War Memorial Convention Hall, hosted by the Kapa‘a Senior Club. From above: Kekaha Senior Club members Sofia Castro, Caroline Santos and Ramona Naka‘ahiki having fun with elaborate masks; ladies from the Lihu‘e Senior Club smile for the camera; Kamala Mersberg leads the Kilauea Senior Club during the Mardi Gras Parade. Facing page from top: Bernice Kubota enjoyed the antics of Dollie Brierley, playing with her jester’s hat; below: B.J. Ka‘aihue and Brenda Viado on the dance floor.
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Kaumakani circa 1940s - 1950s Daily Life
Edited By Christine Bothmer
This article is the second in a series from an interview with Basilio Fuertes. Here he reflects on daily life in Kaumakani:
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hen you go to Kaumakani, down the road, before you reach the factory, we used to go to this place called the Round Ring. There’s a banyan tree right in the middle and a rock wall around it. Tourists used to come down there to look at the sugar plantation. They’d go around the Round Ring--that was a landmark for us. We used to say “Eh, you been to the Round Ring?” (laughs) What a name Round Ring!
Basilio Fuertes at the Round Ring. Below, plantation equipment stands idle near the mill.
We had a post office, a barber shop, a sweet shop and a store. The store was run by the company and you could pay by cash or you could use your account number which was called the bango
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number [father’s employee ID number]. A bango number is very important, wherever you go they’re going to ask your bango number, like if you go to the dispensary, at that time all the medical was free, so if you go there they’re going to ask you “What’s your bango number?” Our bango number is 2880. When you get your medicine, they ask your bango number. When you pick up your paycheck they ask your bango number. Kaumakani Store was a big store. Even Hardware! Takeo Fujii, Mr. Delacruz, Charlie Fu, Nora Yamamoto all worked there. I can see them working. They were really nice people. Charlie Fu, he was the butcher. Everybody had a specific job to do in the store. People used to stock the place with canned goods and things like that. They never did home delivery, you go there and pick up your own provisions.
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now the machines can plant everywhere. When we know the strike is gonna come, people used to stock up with rice. We used to buy 100 lb bag of rice at a time. If you have rice and your own vegetables, that’s all you’re gonna eat. Most of the families raised chickens for eggs and for home use meat. If the chicken gets old and doesn’t give any eggs, you slaughter the chicken and that’s the way we had our meat. So that’s the way we lived, you know, with the vegetables we eat, with the chickens we raise. Ms Soriano, she used to buy a pig and slaughter the pig. Some people used to buy a small portion from her. All the kids, we used to go barefoot until we were 8th grade. Then Mr. Hirabayashi, he was the principal, says “when you’re 8th grade, everybody wears shoes.” We said “Oh wow,” you know, “we used to come to school barefooted and... use shoes?” So everybody wears shoes and pretty soon everybody would carry their shoes home with blisters [on their feet] because we never did wear shoes before.
In the plantation you had people come to your house and fix your home. There were two carpenters, Mr. Kokami and Mr. Oyakawa. The newer houses never did get anything broken, maybe they would fix a screen, small little things. But in our place, they used to come fix the door, things like that. They In the next issue, Basilio talks about leisure had a painter, Alfred Gubaton was his name. time on the Olokele Plantation. They would come in the off season because you don’t grind [sugar cane] all year, there’s a season for it. There’s a season when you plant, then after they burn the cane, they bring the cane to the mill, but when it’s off-season, they help clean up the community. This old man Akagi used to take care of the mules and he lived way above the church. They had maybe half a dozen mules. A very useful animal because they carry fertilizers and seeds of cane in the field. So the mule was a very important animal, but
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illiam Parbo’s favorite way to prepare akule is the way his parents taught him--akule soup. “I don’t use measurements,” he says, “just add a little and taste and add some more to get it just right.” Originally from Kekaha, William came home to Kaua‘i in 1969 after the Vietnam War. He worked for several years as a tour bus driver, and then moved to the mainland to drive a semi-truck, delivering goods in Kansas City, Cincinnati, and San Jose. He retired and moved back to Kaua‘i to be with his aging parents. Currently he is a security officer at Ho‘ola Lahui, where he enjoys staying busy and interacting with people. “I still freedive,” he says, and with a laugh adds, “but not as deep as I used to.”
Akule Soup
2 akule, heads & tails removed, cut in half crosswise water to cover, about 2 cups 1 ½ or 2 tsp each fish sauce and vinegar ¼ small round onion, thinly sliced 1 or 2 green onions, chopped Ginger, about 1 inch of a good-sized root, peeled and crushed optional: 4 leaves of won bok, sliced Combine all ingredients except green onion and won bok in a 2 quart saucepan, bring to a slow simmer for about 5 minutes. Add green onions and won bok, simmer for 5 more minutes. Delicious! Serve with rice. Serves 2.
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Okinawan Festival:
The Kaua‘i Historical Society celebrated Okinawan Day at the Aston Aloha Beach Resort. Facing page clockwise from bottom: club President Alan Hiranaka, with lei, leads the Kaua‘i Sanshin Club in a performance with sanshin, traditional Okinawan instruments; Mamo Kaneshiro secures good luck during the shishimai (lion dance); masterful dynamic movements of the shishi amazed the crowd; a neighbor island resident draws her bow across her kokyu. Above, neighbor island guest performs. Left, Susan Uyeda performs the Eisa folk dance while, below, Donna Umetsu maintains the beat on a paranku drum.
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Community Resources
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Community Resources
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Kapi’olani Community College’s Kupuna Education Center “Kupuna Connections” TV series • Family caregiver training & tips • Professional & para-professional training www.KupunaEducation.com
Share The Care Kaua’i We help organize family, friends & resources to form caring teams. Teams may be helped with STC volunteers if available. No fees. Contact Deborah Duda 332-7668 deborahduda@yahoo.com
NEED HELP WITH FOOD STAMPS? S.N.A.P. Supplemental Nutrition Assistance Program Assistance by Child & Family Service To schedule an appointment call: Dory at Hale Ho’omalu (821-2520) or Momi at Nana’s House (338-0252)
Parkinson’s Support Group Talk story and share ideas. People with Parkinson’s or any progressive disease and their caregivers meet at the Regency at Puakea the last Tuesday of every month, 5:00pm - 6:30pm. Call Susan Storm at 212-1250
Think B.I.G. Provides advocacy & support for persons with acquired brain & spinal cord injuries, their families & caregivers; info sharing and community outreach. Interested professionals welcome. Monthly meetings 2nd Wednesday 4:30pm - 6:30pm Kapaa Neighborhood Ctr.
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Sharing the Care,
An Idea Whose Time Has Come By Deborah Duda “I’ve been taking care of Mom who has Alzheimer’s almost alone for 5 years. I’m exhausted and irritable most of the time.” You’ve probably heard a similar caregiving story. As family and friends, we often ask, “How can I help?” As often, a stressed caregiver doesn’t know what to ask for, or even how to ask for help. An island wide volunteer, grassroots movement called Share the Care (STC) is one solution to help us care for loved ones at home without burning out. Sponsored by Kauai Hospice, but not limited to hospice patients, STC volunteers help caregivers to organize their family, friends, and resources to form caring teams. For caregivers who don’t have sufficient family and friends, STC volunteers fill in to form hanai, or extended, families. Volunteers perform a wide variety of tasks including, but not limited to respite care, bringing over a meal, babysitting the kids, transportation to appointments, or shopping. Volunteers are encouraged to volunteer only for things they would enjoy doing, for whatever time they have available. The idea is: If we each do a little, we can do a lot. To make a referral, volunteer, or request information, contact Deborah Duda, STC coordinator, 332-7668, or Kauai Hospice, 245-7277, or email deborahduda@yahoo.com.
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Ask the Nurse
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By Christine Bothmer
Question:
I take care of my mother who has Parkinson’s. Sometimes she speaks so softly I can barely hear what she is saying! I ask her to talk louder but she doesn’t seem to be able to. I can barely read her handwriting, so that doesn’t work either. What else can we try?
Answer:
This is a common challenge many with Parkinson’s face. Here are a few things you can try that have worked for others: encourage her to speak in short sentences and to take a deep breath before speaking; have a picture card handy for when she is having a particularly difficult time so she can point at what she is trying to communicate. Include pictures of food, drink, a chair, a bed--this is an opportunity to incorporate a leisure activity you can do together by looking at magazines and deciding together which pictures to include. A speech therapist can teach voice projection exercises that can help with clarity as well as projection. Ask her doctor for a referral.
Above and back cover: More Mardi Gras photos!
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