Rolando Chaves was diagnosed with Parkinson’s disease in June 2005, six months after noticing a tremor in a finger. He has undergone deep brain stimulation twice to control symptoms. While his speech has slowed, he continues to exercise to maintain his physical ability.

In June, he and his family will embark on a 500-mile pilgrimage in northwestern Spain known as “El Camino de Santiago de Compostela” or “The Way of St. James.” He has named his walk “El Camino for the Cure” and the family also will host a silent auction for the Iowa Chapter of the American Parkinson Disease Association on Friday with the goal of raising $10,000 for research and local efforts.

Chaves is training by walking four miles a day. He explained the journey with the help of his wife, Gina. Both are members of the association’s board of directors.

What therapy has worked well for you?

Rolando: I had deep brain stimulation five years ago.

Gina: He only had symptoms on one side, so they did the left side to take care of the right side of the body. Then tremors started on the left side.

Did medication help?

Rolando: I tried five different medications and nothing really worked. They had side effects and didn’t help the tremors. I lost 20 pounds.

How has Parkinson’s impacted your life?

Rolando: At first I tried to run away from it by changing jobs. I tried to hide it.

Gina: He didn’t want co-workers or friends to know he was dealing with this. Our kids were both in middle school at the time.

We were trying to deal with this change, so it was very stressful for all of us.

Rolando: I came back to my old job. I realized I needed a support system.

Gina: His voice was still at a manageable level. It was two years ago after the second surgery that he started noticing some difficulty.

How did you get the idea for the walk?

Rolando: I heard about it growing up.

Gina: When we were traveling to Costa Rica, the in-flight magazine had an article about it in the movie “The Way.” We saw the movie.

Rolando: I wanted to do it right away.

What’s the purpose of the walk?

Ronaldo: It’s mainly to create awareness here and share time with family.

Gina: The Facebook page will help people stay connected. It’s a physical, spiritual and social journey.

What we’ve heard from others who have done the walk is that you meet a lot of people. In the hostels there are family-style dinners, so there will be opportunities to talk to others.

See article online: http://www.desmoinesregister.com/apps/pbcs.dll/article?AID=2013304220015

Read the online version of Live it! Featuring Bill and Corrine Hinkle of Dike, Iowa.

Download Conference Registration Brochure

(Registration brochures will be sent in the mail sometime in April and will be available for order)

Before clicking on the link below, please read the following registration instructions:

1) If you are attending the conference by yourself – please register under ‘Individual Admission’

2) If you are attending with another person (spouse, partner, caregiver, friend or family member), please register under ’2 person Admission’

3) If more than 2 people are attending in your group – please register each additional person SEPARATELY as an ‘Individual Admission’

Now, let’s get you registered!! (Agenda for Conference is below)

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Hotel Accomodations in the West Des Moines

For those needing overnight accomodations, the following area hotels are offering rooms at a discounted rate if you mention that you will be attending the Conference.

Fairfield Inn & Suites by Marriott, 7225 Vista Drive, West Des Moines: Discounted rate of $92 until May 24. Mention group name as American Parkinson Disease Association Conference. Call (515) 225-6100.

Springhill Suites by Marriott, 1236 Jordan Creek Parkway, West Des Moines: Discounted rate of $92 until May 24. Mention group name as American Parkinson Disease Association Conference. Call (515) 223-9005.

Motel 6 – Des Moines West, 7655 Office Plaza Dr N, West Des Moines: Discounted rate is between $44.99 and $67.49 depending on occupancy of 1, 2, 3 or 4 people/room size. Rate available until May 23, 2012. Mentione group name as American Parkinson Disease Association Conference. Call (515) 267-8885.

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Conference Agenda

8:00 a.m. – 3:00 p.m.: Registration/Exhibits

8:15 – 8:45 a.m.: Movement session in the morning: Delay the Disease Exercise Sessions

9:00 – 9:05 a.m.: Welcome and Opening Remarks

9:05 – 9:50 a.m.: Beyond Medicine: Holistic Therapies for Living your Best with Parkinson’s , Presented by Dr. Monique Giroux, Co-Founder and Medical Director at Movement and Neuroperformance Center of Colorado, PC

9:50 – 10:05 a.m.              Break

10:05 – 10:35 a.m.: A Healthy Dose of Laughter, Presented by Laura Gentry, Lutheran Minister and Laughter Yoga instructor                                               

10:35 – 11:20 a.m.: Practical Concerns in Parkinson’s Disease: Exercise and Driving, Presented by Dr. Ergun Uc, Neurologist and Professor, University of Iowa

11:30 to 12:15 p.m. – Breakout  Session 1

Kay Vanags, Family Caregiving Specialist, Aging Resources of Central Iowa – Giving Caregiver’s a Hand

Dr. Jeremy Greenlee, University of Iowa, Neurosurgeon – Deep Brain Stimulation:  Why Me or Why Not?

Dr. Ergun Uc, University of Iowa, Neurologist – Medications 101

Heather Illg, Urbandale Hy-Vee Dietician – Aging Well

Val Stickle – Diehl, RN, Mercy Hospital Ruan Center – Practical Tips of Care

Mary Lea Holcomb, Healing Therapies – Healing Touch Strategies

Dr. David Nordstrom – Palliative Care in Parkinson’s

Dr. Stephanie Pothoven, Urologist and Iowa Clinic – Special Topic: Incontinence

Gary Johnson – Making Magic: Let the Ipad Work for You, Assistive Technology Demonstration

12:15 – 1:15 pm: Lunch

1:30 – 2:15 p.m.: Breakout Session 2

Mike Kendall, Social Worker – Caregiving and Communication

Derek Campbell, Neuropsychologist – Special topics: Hallucinations

Dr. Stephanie Pothoven, Urologist and Iowa Clinic – Special Topics: Incontinence (Repeated from first session)

Kathy Mercuris, Assistant Professor, PT, Des Moines University – Making Tracks with Gait Research in Parkinson’s Disease

Dennis Martin, Des Moines area photographer – Adapting a Hobby: Photography

Michelle McGregor, Speech Pathologist , Iowa Health System– Communicating Effectively When You Have Parkinson’s Disease

Laura Gentry, Laughter Yoga Specialist and Lutheran Minister –  Live a Laughing Life

Becky Holmes and Jen Voorhees, Exercise Trainers – Delay the Disease Exercise Session

Amity Wagner, Music Therapist – Percussion and Drumming Session

Main Auditorium Session

2:30- 3:15 p.m.:  Non-Motor Symptoms and Parkinson’s Disease

Dr. Lynn Struck, Movement Disorders Specialist, Iowa Health Sub-Specialty Clinics

In case of emergency – you might want to have these on hand!

Download an Emergency ID Card for a person with Parkinson’s

Download and Emergency ID Card for a Caregiver

 Events taking place throughout the month of April

Click on the image below or download a flier

Things YOU Can Do in April

1. Get a proclamation signed by your city or town council. Download a template (made available through Parkinson’s Action Network), see if you can attend your city or town council meeting and have your mayor sign it.

2. Write a letter to the editor of your local newspaper that explains the impact Parkinson’s has made on your life. Download a template (made available through Parkinson’s Action Network).

3. Attend a support group. There are 35 support groups in the state of Iowa; if you would like to get to know others in your area and learn more about Parkinson’s, join a support group. No support group in your area? Call the Information and Referral Center at (877) 872-6386, we can help get you started.

4. It’s spring! If you are interested in being involved with some physical activity in a group setting, see if there is a Parkinson’s exercise class in your area.

5. Download a  Caregiver Emergency ID Card or Parkinson’s Emergency ID Card or order some from the Information and Referral Center, (877) 872-6386.

6. Volunteer at our upcoming June conference. Contact Volunteer Coordinator Deb Wityk at 515-577-2990.

7.  Letting people know about the Iowa Chapter of the American Parkinson Disease Association; help us spread the word. We are a resource for information, knowledge and support.

MUSCATINE, Iowa — Leading classes to help people with Parkinson’s disease to do better with their flexibility and balance is   something Anthony Krumbholz does in part to honor his father.

Krumbholz, a 34-year-old Muscatine firefighter, leads Delay the Disease classes at the Muscatine Community Y twice each week. His father, John, who lives with Parkinson’s disease, is co-president of the state chapter of the American Parkinson Disease Association.

“This is my way to help with the cause,” said the younger Krumbholz, a Muscatine resident who’s been certified as a personal trainer by the National Academy of Sports Medicine and is certified to teach Delay the Disease classes as well.

Krumbholz works around his firefighting schedule to lead the classes, which last about an hour. This month the classes, which cost $5 per session, are being held on Monday and Wednesday mornings beginning at 10 a.m. The schedule might change in March, depending on Krumbholz’s firefighting schedule.

After just a few classes, Ralph Daniello of Letts said he’s noticed a big improvement with his balance. Falling down is one of the biggest health hazards for people with Parkinson’s disease, Krumbholz explained.

“I’m telling you, I was falling down 10 or 12 times a day,” Daniello said. “Now I don’t even carry a cane.”

“It’s a repetition thing,” said Jerry Geoghegan of Muscatine. “If we can do outside of class what we learn in class, that’s where the benefit comes.”

John Schaub said people with Parkinson’s disease “have a tendency to shuffle, and that’s something we need to work out.”

There’s a series of agility exercises designed for that. Using a ladder-like plastic mesh laid out on the gym floor, Krumbholz had the four participants first walk and eventually do something like a line dance in and out of the ladder squares. Daniello blitzed through the steps, while for other participants it’s more of a challenge.

Throughout, Krumbholz is encouraging and, at the same time, determined to teach participants the correct technique.

“We focus a lot on flexibility,” he said. “It’s a key component of the class.”

The group starts each class with a 20-minute stretch, then moves to strengthening core muscles. One exercise has them doing 12 push-ups, using their elbows instead of their hands.

Another session involves exercising with dumbbells. Then it’s on to balance exercises, such as lunges. At one point, Krumbholz asked the class, “I got lost. How many was that?”

“Twenty!” joked Wayne Corriell of Atalissa. Repetitions are generally limited to 12.

“Let’s say six,” replied Krumbholz, smiling.

“You gotta watch these guys,” Geoghegan said. “Sometimes they cheat.”

“Snitch!” said Daniello, laughing.

Schaub said he’s noticed a difference in balance and coordination after only about six classes.

“We’re strengthening our bodies and working on our balance — and we’re doing a whole lot of stretching,” he said. “It’s a good program.”

Originally published in the Muscatine Journal in February 2013.

http://muscatinejournal.com/news/local/people-with-parkinson-s-strengthen-their-balance/article_583ce872-77eb-11e2-abe3-001a4bcf887a.html

A Ride Across America -Rich Mills

On June 29^th,  LaDona Molander and John Krumbholz, Iowa Chapter Co-Presidents, were fortunate enough to attend the O’Donnell Family & Friends Golf Outing. As the name suggests, this event is organized by Dan and Dee O’Donnell along with their entire family and friends to benefit a different non-profit organization each year. In 2012, the Iowa Chapter of the American Parkinson Disease Association was honored to be the recipient of this year’s proceeds.

It was a beautiful day filled with golf, good food, and lots of friendly interactions. After an amazing outpouring of support and good will, LaDona and John were presented with a check for $80,000 from this year’s event. This was the most successful of the 19 outings the O’Donnell’s have sponsored and the proceeds will go a long way towards easing the burden of those Iowans with Parkinson Disease and their caregivers.

We are very thankful to the entire O’Donnell family for their hard work and generosity. At a time when many people are more focused on their own personal gratification, the O’Donnells have forged a legacy of doing for others that will not soon be forgotten. May God bless them for all they have done and will continue to do in service to others…. may He hold them in the palm of His hand.

• Newly diagnosed “young” – individuals under the age of 60 (maybe even 65 if still working full-time)
• Once diagnosed young – individuals of any age who were diagnosed under the age of 60
• Caregivers of either of the above groups