feature story, the kirks: a journey to hope story, the kirks: a journey to hope ... nutrition,...

January • February • March 2014

Hope HeALTHCARe SeRVICeSParkinson Program Newsletter

Feature Story, The Kirks: A Journey to HopeAlternative Therapies for PD

Annual Parkinson Symposium

As we begin 2014, we commemorate two wonderful Hope milestones. Hope HealthCare Services marks its 30th anniversary and our Hope Parkinson Program celebrates its fifth year of service to our community! Throughout these years, it has been my privilege to meet many individuals and families who have been touched by Hope in a meaningful way. These experiences are exactly why our organization is here.

At Hope, we are dedicated to providing vital information to those in our community with movement disorders and their care partners. This is why I am happy to introduce a new and improved newsletter. In this magazine format, you will find uplifting stories about our participants’ achievements along with useful tips and educational information. Each issue will include articles from area experts in movement, nutrition, speech and neuropsychology. Readers will also hear from neurologist, Dr. Amanda Avila, our Parkinson Program medical director. It is our hope that these additions will make our newsletter a greater resource for you.

To our participants, medical partners and generous community – thank you for your support. You have made the first five years of our Hope Parkinson Program a wonderful success. We look forward to serving you and your family in the years ahead.

Dear Friends of Hope Parkinson Program

Samira K. BeckwithPresident and CEOHope HealthCare Services

Participant Spotlight: Cindy SteakleyCindy Steakley is a Hope Parkinson Program participant and volunteer who was diagnosed with PD approximately 13 years ago. Cindy’s history includes teaching with the Army Dependent Schools in Germany and traveling through the countries west of the Iron Curtain. She met her husband John in Germany, became an Army wife and had four sons.

Until her diagnosis of PD, Cindy had never taken an interest in drawing, painting - or even doodling! However, she always considered herself to be a creative person interested in sewing, landscaping and interior design. During the recent Creative Stress Retreat, Cindy and other Hope

Parkinson participants learned about Zen Doodling. Cindy found it fun, relaxing and challenging, and noted, “it can be very addictive.”

Cindy recently entered her artwork into the annual LMHS Art by the disABLEd calendar contest. A panel of local judges awarded her third place and a $100 prize. She has decided to donate her winnings to the Hope Parkinson Program in memory of Alan White. Please join us in congratulating Cindy and thanking her for this generous donation to our program!

Doug MacGregor and Cindy

On the MoveA Matter of Balance ProgramDevelop strategies to lower your risk of falls. This evidence-based program is a combination of discussions, fun brainstorming and exercises designed specifically to improve balance strength. If you have fallen in the past, or if you restrict your activities because of concerns about falling, you will benefit from this special 8 week program. A Matter of Balance is provided by the Older Americans Act, so there will be no cost to participants. You must be a member of the Hope Parkinson Program to attend. Pre-registration is required and spaces are limited.

Dates: Thursdays, April 10 -May 29, 2014Time: 2:30 p.m. - 4:30 p.m.Location: Hope HealthPark Community Room, 9470 HealthPark Circle, Fort Myers

Creative Stress Retreat ContinuesRelieve stress, regain large and small muscle control and improve your mood and brain functioning during this unique Creative Stress Retreat. During this 8 week series, you will learn PD Tai Chi practice basic introductory movements and Zen doodling while enjoying refreshments and socialization. Pre-registration is required and spaces are limited.

Dates: Wednesdays, January 8 - February 26, 2014Time: 3:30 p.m.Location: Hope HealthPark Community Room C, 9470 HealthPark Circle, Fort Myers

Remember to RSVPReserve your space for A Matter of Balance or for the Creative Stress Retreat

by contacting Michelle Martin at 239-985-7727 or [email protected].

North Fort Myers UpdateOur North Fort Myers PD exercise classes and support group have relocated to the beautiful new Lee County facility. Join us at the North Fort Myers Recreation Center, 2000 North Recreation Park Way, N Fort Myers, FL 33903.

One of the most common questions I’m asked is, “what alternative therapies are available to treat my Parkinson’s disease?” Some of these common supplements have shown promise in clinical trials. Remember to inform your doctor of all vitamins and supplements on your medication list and discuss the possible risks and benefits before starting.

Coenzyme q10 (CoQ10) – This popular supplement has been suggested as a possible neuroprotective agent and some believe that it may slow the disease progression in PD. Unfortunately studies using low doses of CoQ10 have not shown this to be true. It remains to be seen whether higher doses (greater than 2400 mg /day) will be more effective.

Caffeine – Many small studies suggest caffeine may alleviate non-motor symptoms such as fatigue, constipation and cognitive impairments.

Fava beans – These beans are part of the classic “Mediterranean diet”, which has been recommended for Parkinsons disease patients. Fava beans contain small doses of L-dopa and may therefore improve some motor symptoms of PD.

NADH – This supplement was originally thought to raise dopamine levels; unfortunately, studies have not demonstrated this claim.

Creatine – Creatine had been studied as a possible neuroprotective agent. However, the National Institue of Health recently discontinued a large study attempting to demonstrate its benefit. The study was stopped early because there was clearly no neuroprotective benefit found in patients with PD.

Alternative Therapies for PD: Dr. Amanda Avila

A study recently published in the Annuals of Neurology journal suggests that eating foods with naturally-occurring nicotine may be able reduce the risk of Parkinson’s disease.

Low levels of nicotine can be found in foods like peppers and tomatoes. In this study, people who ate the most peppers - about two to four peppers weekly - had the strongest response, lowering their Parkinson’s risk by 30 percent. Dr. Kelly Changizi, co-director of the Center for Neuromodulation, said that the results show the influence of diet on neurological disorders. “It provides further evidence of how diet can influence our susceptibility to neurological disease.” Changizi explained. “Patients often ask what role nutrition plays in their disease, so it’s very interesting that nicotine in vegetables such as peppers may be neuroprotective.”

Nutrition News

Amanda Avila, MDHope Parkinson Program Medical Director

Movement Disorder Specialist, Florida Neurology Group

Save the Date: Coming EventsAnnual 2014 Parkinson SymposiumThis year’s symposium speakers and topics include:

• Amanda Avila, MD, Hope Parkinson medical director Traditional, Alternative and Complimentary Treatments for Parkinson’s Disease

• Angela Hardwick, MD, Norton Neurology Institute Parkinson’s Below the Waist – A Perspective on Gait and Balance

• Eric Ahlskog, MD, Mayo Clinic PD expert Eight Problems of Parkinson’s Disease that Lend Themselves to Treatment

This half day morning event will be held at the Crown Plaza conference center, next to the Bell Tower Shops. Registration will open on January 6 and closes on March 4. The cost is $25 per person, which includes continental breakfast. Valet parking is provided. For details, e-mail [email protected].

Parkinson Symposium 2014March 14, 2014

Crowne Plaza, Fort Myers9 a.m. – Noon

Check-in begins at 8:00 a.m.

Special Classes• How Does Diet and Exercise Affect PD?• The Importance of Planning for the Unexpected• Finding Hope For Living Well With PD• Tips and Tricks to Make Moving with PD EasierCheck the calendars in the back of this newsletter for class dates, times and locations.

Being a good communicator means being able to:• hear and process what another person says• formulate a thought quickly enough to

respond in a timely manner• tolerate interruptions and other distractions • incorporate facial expressions and body

language while speaking• correctly interpret facial expression and other

non-verbal signs

It’s no surprise that individuals with Parkinson’s may eventually have trouble with communication. Here are some tools that may help:

A personal voice amplifier This device is useful in group settings. The amplifier gives instant loudness, and the volume can be regulated as needed.

LSVT® LoudSpeech Therapy Program

Speech Vive™This device helps individuals with a weak or soft voice. It acts on the Lombard reflex, which causes most of us to speak louder when there is background noise. Imagine that you were listening to a ball game on your portable radio headset. If your wife asked you a question, you might answer her in a loud voice, because you are talking over the background noise.

Voice Aerobics™This exercise program focuses on breath support, posture and vocal function exercises for improved vocal performance.

Choral SingingWe’re looking for Hope Parkinson Program participants who would be interested in a Choral Group. Contact Michelle Martin at 239-985-7727.

by Mary Spremulli, MA,CCC-SLPblogger, owner Voice Aerobicshttp://www.voiceaerobicsdvd.com/

PD ExpertEnhancing Communication

The Kirks: A Journey to HopeDouglas Kirk was diagnosed with Parkinson’s disease when he was only 40 years old. His initial thoughts about the disease – a progressive disorder of the nervous system that affects movement – conjured up images of being wheelchair-bound for the rest of his life.

Today, 11 years after first hearing the diagnosis, those images have long faded. In fact, Doug recently completed a 430-mile bike ride as part of the Pedaling for Parkinson’s team in the seven-day Register’s Annual Great Bike Ride Across Iowa. The race, touted as the oldest, largest and longest recreational bicycle tour in the world, was started by the Des Moines Register more than four decades ago.

Organized by Dr. Jay Alberts - who has extensively studied the effects of Parkinson’s on motor performance and learning - the Pedaling for Parkinson’s team came to life after the doctor discovered that bike riding lessened symptoms of the disease.

Doug and his wife, Sheila, who are both engineers, rode with the team to help raise money for research to identify the positive impacts cycling has on people living with Parkinson’s. Following the event, Doug told his fellow participants in Hope’s Parkinson Program, “It was the best I have felt in 10 or 15 years.”

A Different Kind of JourneyAfter his initial diagnosis in 2002, Doug took medication that eased his symptoms, including a high

dose of the prescription drug Mirapex. He soon began to suffer from compulsive tendencies that manifested in online gambling – something he had never done in the past nor had felt the urge to do.

“I rationalized the gambling by thinking it would help my family financially when I would no longer be able to work,” Doug said. “It went on for about a year until a visit with my doctor. He asked if I was experiencing any unusual behavior. I said, ‘Well, there is the gambling.’”

Sheila knew nothing of Doug’s gambling since it occurred at night, when Doug had difficulty sleeping. While the gambling didn’t cause major damage to his family’s finances, Doug went off the medication and found that only two days later, he no longer felt the compulsion to gamble. “I never considered it was the drug causing me to gamble,” he said.

Sheila began researching the effects of nutrition and exercise in individuals with Parkinson’s; together, the couple came to understand how the brain functions. “The overall journey has made Doug a better person,” Sheila said.

Doug agreed. “It changes your focus. I think more about my body and life. You figure out what’s important,” he said. Shortly after being diagnosed, Doug sought out a support group in their home state of Iowa. He found others who were dealing with this life-changing illness and discovered comfort in discussing his experiences with Parkinson’s. When Sheila and Doug decided to leave Iowa and move to

continued

These free groups are available to all caregivers, call 800-835-1673 or visit HopeHCS.org/caregiver for details. • Hope Bonita Springs Community Room on Wednesdays 11:00 a.m.• Hope Lehigh Acres Community Room on Saturdays at 2:00 p.m.• Hope NFM Community Center on Thursdays at 1:30 p.m. • Hope HealthPark Community Room A on Wednesdays at. 1:00 p.m.

Doctors everywhere have a common dilemma: when a patient arrives with a series of memory and emotional complaints, they can’t open their patients’ skulls to see how their brains are doing! Rather, non-invasive ways of “seeing” the brain’s functioning are necessary.

Images of the the brain (e.g., MRI, PET and CT scans) may be ordered and can be very helpful is “seeing” obvious problems such as damage due to stroke or pathological tissue (tumors). However, brain images do not offer enough information on how the brain behaves. Many “normal” looking brains act impaired and some brains with readily seen damage can behave just fine. The way the brain looks might be completely irrelevant to how it functions, as this is what causes disturbances in daily living.

A neuropsychological assessment is the gold-standard of “seeing” how a brain behaves (remembers, pays attention, processes language, etc), which can then be related to brain systems (e.g., cortex, sub-cortical matter) and processes (e.g., normal aging, dementia). However, neuropsychological tests cannot “see” the structure of the brain.

Therefore, brain imaging and neuropsychological testing work best in concert to achieve the most accurate diagnosis possible.

by Dr. Mabel LopezNeuropsychologist, Licensed Psychologist, PY7375

Mind and Brain Care: www.MaBC.co • 239-768-6500 office

Hope Caregiver Support Groups

PD ExpertWhat’s the relationship between neuropsychological testing and brain imaging?

Cape Coral two years ago, Sheila’s sister recommended the Parkinson Program.

Living With Hope“It is wonderful to have an organization like Hope with such tremendous resources,” Doug said. “Hope’s staff members are passionate about care, and they treat you as an individual. We have been pleasantly surprised by Hope’s services and the quality of care.”

Doug and Sheila are taking a leadership role in the Cape Coral monthly support group, which is free of charge, open to caregivers, and does not require pre-registration. The Kirks will work to make the support group a great circle of friends supporting each other through a difficult journey. “It is not just the one

diagnosed with Parkinson’s affected by the disease,” Doug said. “It affects your whole family.”

“Doug and his wife are amazing people,” Hope Program Director Michelle Martin said. “They are smart, optimistic and outgoing. They’ll be great resources for their fellow program participants.”

Doug and Sheila with their children Michael and Mackenzie

Charlotte Regional PD Exercise Classes733 East Olympia Avenue, Punta Gorda, FL 33950 Jim Norton, 941-637-2450

Senior Choices HelplineState-designated disability resource centerMedicare and Medicaid counseling, emergency electricity assistance, adult daycare, home delivered meals, homemaker assistance, legal assistance, personal care, respite care, and access to health and wellness programs866-413-5337www.srchoices.org

Punta Gorda Monthly Caregiver Support GroupPunta Gorda Isles Civic Association Room #4 2001 Shreve Street, Punta Gorda, FL 33950Kelly Gaylord 941-637-6418

Whole Body View Movement and Balance ClassFaith United Methodist Church5690 McGregor Blvd., Fort Myers, FL 33908Dan McGovern [email protected]

Lee Co. Parks Arthritis Foundation Water AerobicsBonita Springs 239-947-1948; Lehigh 239-369-8277; North Fort Myers 239-652-4520; Sanibel 239-472-0345; San Carlos 239-267-6002

LMHS PD Rehab Clinics & Balance ScreeningNathalie Grondin, PT, 239-418-2023

LMHS Chronic Disease Workshop239-424-3122

National Parkinson AssociationPD Help Line; Patient Education Booklets; Aware In Care Kits; “Ask the Doctor Forum”800-473-4636 or www.parkinson.org

MJ Fox FoundationPD Research Opportunitieswww.mjfoxfoundation.org

UF Center for Movement Disorders 3450 Hull Road Gainesville, FL 32607352-265-8408

Resources for Parkinson’s Disease

Hope Visiting Nurses: Home Health Care and Private Duty NursingOur newest program, Hope Visiting Nurses, provides Medicare-certified home health care and private duty nursing, assisting patients directly in their own home or residence. Some of the services offered by Hope Visiting Nurses include:

•Medication management and education•Disease management, including diabetes care•Wound care, including VAC therapy•Use of oxygen and pulmonary equipment•Bathing, dressing and personal hygiene•Light housekeeping and meal preparation•Physical, occupational and speech therapies

“Home health is a natural complement to the services Hope has provided for decades,” said Samira K. Beckwith, Hope President and CEO. “We can serve individuals over a longer period of time, allowing us to provide more seamless, personalized care and attention.”

If you know someone who could benefit from home care, please have them call Hope Visiting Nurses directly at 239-337-4848. You can also find out more on our website at HopeHCS.org/HomeHealth.

Meet Hope HealthCare Services

Hope Visiting Nurses, originally known as the Visiting Nurses Association of Southwest

Florida, has provided quality care since 1966.

Zumbathon 2013A fun, fast-paced fundraiser raised $1400 for the Hope Parkinson Program. Thanks to Nancy Perez and her crew for an outstanding job! If you know someone interested in Zumba, have them call Nancy at 239-464-5214.

Tai Chi for Better Balance

Michael J. Fox Show: Premiere Viewing Party

All social and educational events require reservations as seating is limited. Schedules are subject to change. Confirm current programming or make a reservation: 239-985-7727 or [email protected]

Calendar Locations:• Bonita Springs Community Center, 10520 Reynolds Street• Cape Coral Wellness Center, SE 13th Court, Cape Coral• Crown Plaza at Bell Tower, 13051 Bell Tower Dr., Fort Myers• Cypress Cove “Edison Room”, 10500 Cypress Cove Drive, Fort Myers• First Church of the Nazarene, 13545 American Colony Blvd., Fort Myers• Grand Court, 8351 College Parkway, Fort Myers• Hope Bonita Springs, 27200 Imperial Parkway, Bonita Springs • Hope Cape Coral, 2430 Diplomat Parkway E., Cape Coral• Hope HealthPark, 9470 HealthPark Circle, Fort Myers• Hope Lehigh, 1201 Wings Way, Lehigh Acres• Hope NFM Community Center, 13821 N Cleveland Avenue, N Fort Myers• North Fort Myers Community Center, 2021 N. Tamiami Trail, N Fort Myers

$10 facility card required, lifetime membership• Punta Gorda Isles Civic Association Room #4, 2001 Shreve Street, Punta Gorda, FL 33950• Sanibel Recreation Center, 3880 Sanibel-Captiva Rd.

Hope Parkinson Program Event Calendars

Support Groups: BlueExercise Classes: BlackCreative Events: PurpleEducational Events: RedSocial Events: Green

Monday Tuesday Wednesday Thursday Friday

Happy New Year (No classes)

2Caregiver Support Cape Wellness Ctr.

1:00 pm

3

6Exercise

Cypress Cove 11 am **Bonita 1 pm

PD Tai Chi Practice

7Exercise

N. Ft. Myers 11 am

8Exercise

**Bonita & Sanibel 1pm PD Support

Sanibel 2:00 pm Creative Stress Retreat

Hope HealthPark 3:30 p.m.

9Exercise

N. Ft. Myers 11 am Grand Court 10:30 am

PD Support Grand Court 11:30 pm Cape Wellness 2:00 pm

10Lunch and Learn How Does Diet andExercise Affect PD?

Hope Cape Com. Room 11:00 am

RSVP 239-985-7727

13Exercise


PD Tai Chi Practice Hope Cape 3 p.m.

14Exercise

N. Ft. Myers 11 am

15Exercise

**Bonita & Sanibel 1pm

Creative Stress Retreat Hope HealthPark 3:30 p.m.

16Exercise


17

20Exercise



21Exercise

N. Ft. Myers 11 am

22Exercise



23Exercise


24

27Exercise



28Exercise

N. Ft. Myers 11 am

PD Support Group N. Ft. Myers 12 pm

29Exercise



30Exercise


31Lunch and Learn How Does Diet andExercise Affect PD?

Hope Bonita Com. Room 11:00 am

RSVP 239-985-7727

January

Need Larger Calendars?HopeParkinson.org/Events

or call 239-985-7727


3Exercise



4Exercise

N. Ft. Myers 11 am

5Exercise

**Bonita & Sanibel 1 pmPD Support

Sanibel 2:00 pm Creative Stress Retreat

Hope HealthPark 3:30 p.m.

6Exercise

N. Ft. Myers 11 am Grand Court 10:30 am Caregiver Support

Grand Court 10:30 am Cape Wellness 1:00 pm

7Lunch and Learn The Importance of Planning for the

Unexpected with PDHope Cape Com. Room

11 am RSVP 239-985-7727

10Exercise



11Exercise

N. Ft. Myers 11 am

12Exercise

**Bonita & Sanibel 1 pm


13Exercise


PD Support Grand Court-11:30 pm Cape Wellness 2:00 pm

14Social Event

Valentines TeaHHH Community Room-C 2:00 pm

RSVP 239-985-7727

17Exercise



18Exercise

N. Ft. Myers 11 am

19Exercise



20Exercise


21Finding Hope For

Living Well With PD Intro to PD and Hope

HealthPark Rm. C 1:00 pm

RSVP 239-985-7727

24Exercise



25Exercise

N. Ft. Myers 11 am

PD Support Group: N. Ft. Myers 12 pm (Brown Bag Lunch)

26Exercise



27Exercise


28Community Education Tips & Tricks to make moving with PD easierSpeaker Jeannie Csuy Punta Gorda 10:30 a.m. RSVP 239-985-7727

February


3Exercise



4Exercise

N. Ft. Myers 11 am

5Exercise


PD Support Sanibel 2:00 pm

6Exercise

N. Ft. Myers 11 am Grand Court 10:30 am Caregiver Support Grand Court 10:30 am Cape Wellness 1 pm

7

10Exercise


11Exercise

N. Ft. Myers 11 am

12Exercise


13Exercise


142014 Annual

PD Symposium Crown Plaza-9 am

Registration Required

17Exercise


18Exercise

N. Ft. Myers 11 am

19Exercise


20Exercise


21

24Exercise



26Exercise

N. Ft. Myers 11 am

PD Support Group N. Ft. Myers 12 pm (Brown Bag Lunch)

27Exercise


28Exercise


29

31Exercise


March

Join the Hope Parkinson

ProgramThere is no cost to register and becoming a participant is simple. Visit HopeParkinson.org/Join and follow the easy-to-understand instructions. Registration by phone is also available at 239-985-7727.

Ways to Give Back

SPREAD THE WORD: Share this newsletter with friends, relatives, coworkers and neighbors.

VISIT OUR RESALE STORE: Donate or shop at Hope Chest, located in North Fort Myers.

VOLUNTEER: Lead an exercise class or help with office work.

DONATE: Send a check to 9470 HealthPark Circle, Fort Myers, FL 33908. Indicate “Parkinson Program” in the notes.

ORGANIZE: Design your own event to benefit our program. Call us at 239-985-7727 for details.

hopehcs.org800.835.1673

Sometimes loveneeds a helping hand.they’re relying on you. and you may need some help. At Hope, we understand the importance of being a caregiver. We offer support by coordinating medical needs, explaining options and providing emotional guidance. Together, we can make each day the best possible. Let Hope be there for you.

Home Health CarePrivate Duty Nursing

Medication ManagementPersonal Care Assistance

At-Home SupportCaregiver Assistance

Family EducationPalliative Consultations

Expert Hospice CareBereavement Counseling

Proud Partner Agency

239-985-7727800-859-0314

HopeParkinson.orgThe Hope Parkinson Program is

provided by Hope HealthCare Services, a not-for-profit, 501 (c)(3)-status

community-based agency.

Hope Hospice and Community Services, Inc. 9470 HealthPark CircleFort Myers, FL 33908

Prsrt StdUS Postage

PAIDPermit #589Ft. Myers, FL

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