parkinson’s progress report - creighton...
TRANSCRIPT
VOLUME IV ISSUE I April 2008
Medical Director John Bertoni, MD, PhD
Coordinator
Lisa A. Brovold
Nebraska Chapter Mary Egger, President Mary Jane Petersen,
Secretary Bev Baker, Treasurer
——————————— Parkinson’s Progress report is published quarterly as an information guide only. The newsletter does not serve as legal or medi-cal advice.
Inside this issue:
Parkinson Symposium 2
Spring Events 2
Parkinson’s Pyramid DVD
3
Spring Boutique 4
Hand in Hand 2008 4
Advocacy: Shaking Things Up in Wash-ington DC
6
A Place to Belong 7
New Website 8
Walk 2008 4
Young Onset on the Move
4
Golf 2008 - Don Long’s Story
5
APDA INFORMATION
AND REFERRAL
Parkinson’s Progress report
A P R I L
Did you know… Nebraska is the FOURTH highest state in the nation per capita for Parkinson’s disease!
Did you know… Parkinson’s disease is second only to Alzheimer’s as a degenerative neurological disorder.
Did you know… In the United States, Parkinson’s disease affects more people than the total of those suffer-ing multiple sclerosis, muscular dystrophy and Lou Gehrigs’ disease (ALS) combined.
WE CAN MAKE A DIFFERENCE BY GETTING INVOLVED! Several mayors throughout Nebraska are declaring April as “Parkinson’s Awareness Month” for their city by signing a proclamation and presenting it to the local support group. You are welcome to participate by attending these presentations. More information about Awareness activities will be found on our website, www.parkinsonsne.org under events. Columbus—Thursday, March 27 at 9am; City Hall, 2424 14th Street Gering— Wednesday, March 26 at 2pm; Northfield Villa, 2550 21 Street Grand Island—Tuesday, March 25th at 7pm; 100 E. First Street Lincoln— MAYORAL - Tuesday, April 1 at 2:00pm; 555 S. 10th Street, Room 208 Lincoln— Lt. Governor - Weds,, April 9 at 10:30am; Warner Chamber, State Capital, 2nd Fl. Norfolk—Monday, March 17 at City Hall North Platte—Friday, April 18 at 1:30pm; City Hall, 211 West Third Street Omaha—Wednesday, April 16 at 10:30am; 1819 Farnam, 2nd Floor Spencer—Tuesday, April 1st Stratton—Monday, March 17 at 7:00pm; 311 Bailey Street
These people are involved!
They want to make a difference in easing the burden and finding a
cure for Parkinson’s. They help raise awareness of the disease in their communities by
participating in events.
2 S P R I N G E V E N T S FIRST ANNUAL PARKINSON SYMPOSIUM “Optimal Care for Parkinson’s Disease”
Sandhills Convention Center Friday, May 16, 2008
North Platte, Nebraska
We are excited to present the latest educational opportunity for Central and Western Nebraska! A unique symposium focusing on optimal care for the Parkin-son’s patient will take place on Friday, May 16th in North Platte, Nebraska. An ex-citing forum of speakers will be lecturing to both medical professionals and com-munity participants. One conference setting will host physicians, nurses, pharma-cists, physical, occupational and speech therapists, while another conference will target patients, spouses, family and caregivers. Dr. David Heydrick, a neurologist and Parkinson’s patient himself, will reveal the Parkinson’s Pyramid® strategy to the attendees (look for his article in the newsletter) Dr. Kenneth Follett, a neurosurgeon from the University of Nebraska Medical Center will be presenting current information on Deep Brain Stimulation. Michele Faulkner, Pharm. D., will discuss Parkinson’s medications, while Kristen Payzant will explain why diet and nutrition are important. Dr. Lorraine Edwards will wrap it up by lecturing on optimal medical management for the patient.
Look for the brochure in April! Date/Time Spring Event
Wednesday, April 9 10:30am
State Proclamation Signing Lt. Governor Sheehy
Warner Chamber, State Capital Building Lincoln, Nebraska
Monday, April 21 10:00am
Parkinson Empowerment Program Teleconference:
“Importance of Exercise in Parkinson’s Disease” Sarah Lindau, PT
Contact (866) 626-7347 or online at www.parkinsonsne.org
Wednesday, April 30 10:00am
Parkinson Empowerment Program Teleconference:
“Fall Prevention” Amanda Holst, SLP, VNA Clinical Rehab Manager
Melanie Clark, LPT Contact (866) 626-7347 or online at www.parkinsonsne.org
Friday, May 16 All Day
First Annual Parkinson’s Symposium “Optimal Care for Parkinson’s Disease”
Sandhills Convention Center North Platte, Nebraska
3 Parkinson’s Pyramid® New DVD available from David Heydrick, MD, MS
--from his unique perspective of “doctor and patient”-- Board certified Neurologist, Engineer, and living with Parkinson’s Disease
The Parkinson’s Pyramid® DVD presents Dr. Heydrick’s science-based strategy for healthy living with PD
that brought him improvement in function and quality of life.
The goal: Take charge of your health to raise the chances that you will be better this time next year.
www.parkinsonspyramid.com
Dr. Heydrick was diagnosed with Parkinson’s disease in 2002 at age 39. His symptoms progressed so rapidly that by the end of 2004, he was completely disabled. Dr. Heydrick had deep brain stimulation (DBS) in 2005 which brought him good results. How-ever, he knew for the long term he had to slow the progression of his disease, or he would be headed down the road to disability once again. Dedicating months to research, he synthesized convincing evidence that integrating elements of stress management, focused nutrition and varied exercise could provide not only symptom relief, but also possible neuroprotection. Designed primarily for per-sons with Parkinson’s, their carepartners and those involved with their health care, The Parkinson’s Pyramid consists of sensible guidelines and multiple low-risk, readily available “therapeutics” which address those concepts. There is even hope of some “rewiring” of the brain and the neuromuscular system. The information is comprehensive, practical and presented in Dr. Heydrick’s entertaining style. Thousands have heard Dr. Heydrick speak throughout the U.S. and Canada, at symposia and conferences. He is also the author of “The Patient’s Perspective”, a chapter in the newly published textbook, Parkinson’s Disease: Diagnosis and Clinical Management (2nd Edition, 2008) (Stewart A. Factor, D.O., William J. Weiner, M.D.) Visit www.parkinsonspyramid.com for information about Dr. Heydrick’s DVD. Dr. Heydrick will be a featured speaker at the First Annual Parkinson Symposium: Optimal Care for Parkinson’s Disease in North Platte, Nebraska on Friday, May 16, 2008. His DVD will be available to purchase at that time.
Spring Boutique and Wellness Day
Saturday, April 26th 10am to 3pm
Residence of
Nathan Egger and Meghan Lewis 312 South 68th Street
Omaha, Nebraska (402) 553-4566
Lots of great Mother’s Day gifts!
We will also have Wellness vendors to help keep the body happy.
Come enjoy a cup of Scooter’s
Coffeehouse coffee and shop with your friends!
Young Onset on the Move The Young Onset (YO) Group in Omaha has been very busy. A lovely party hosted by Katie Domayer in the fall set the tone for the new year and brought new members. In November, they traveled to Lincoln to support the new YO group there, and learn from a massage therapist who specializes in helping people with PD. January found many of them attending the Creighton Lady-jays basketball game together, cheering and so-cializing. They are always having fun. The next meeting on Saturday, April 19th at 5pm will be casual and in a member’s home, with a video of an inspiring YO speaker, cyclist Davis Phinney. Please join us! Call Lisa Brovold to get on the invitation roster, or email Colleen ([email protected]) or Katie Domayer([email protected]). As mentioned, a new Young Onset Group has been formed in Lincoln. Their next meeting will be Sunday evening, April 6 at 6pm. They will be host-ing a potluck dinner at 6201 Woodstock Avenue. For more information email Bruce Griffith at [email protected].
4 W A L K 2008
The American Parkinson Disease Association (APDA) Nebraska Chapter is gearing up for the upcoming walk. This year it will be held on Sunday, June 1st at Elm-wood Park, 60th and Dodge Streets. As always, there will be good food, special fun activities and lots of friends dedicated to help the cause of Parkinson’s dis-ease research. You should receive your walk registra-tion brochure in the mail sometime in May. Shake the dust off your walking shoes and save this date for APDA Walk-A-Thon! If you are part of a support group in a different city/town and would like to sponsor a walk of your own, please contact the Nebraska Chapter at (402) 392-2732 or the Information and Referral Center at (866) 626-7347. We would love to show you how to arrange a Walk-A-Thon in your area.
Form your own team Bring your best buddy
Recruit your family
Register: 12 noon Walk: 1:00pm
Hot dogs, chips, and a drink after the walk. Music, face painting, moon walk and prizes
Hand in Hand, Linking Lives for Parkinson’s
We would like to take this opportunity to thank our generous sponsors for our 2007 event: Corporate Sponsors: Live Auction Sponsors: John Dickerson, Summit Global Management - $5,000 Jun and Ree Kaneko - $6,500 Ceramic Oval San Diego, California Nebraska Medical Center - $2,500 Maureen Giesler - $2,850 Exotic Getaway Creighton University School of Medicine - $2,500 Heller Art Images - $4,500 La Boheme painting Baird Holm , LLP - $1,000 In addition, we want to express our appreciation to all the businesses and donors that contributed items for our silent auction. Altogether, everyone’s generosity and support helped make Hand in Hand, Linking Lives for Parkinson’s first event a tremendous success! The Hand in Hand, Linking Lives for Parkinson’s Committee has already begun planning for their next fall event. The date is set for Saturday, September 20th so please mark your calendars and save the date! We would like to outshine our last event and we will need you to help us accomplish it! Once again, we are encouraging our support groups throughout Nebraska to organize a fundraising event on the same day or during that week. In doing so, we can symbolize the linking of hands across Nebraska to raise support and awareness for this degenerative disease. You can be involved by contacting your support group leader to assist them with their project or you can individually host your own awareness party for fam-ily, friends and co-workers. Look on our website, www.parkinsonsne.org, for more information and ideas to promote Hand in Hand, Linking Lives for Parkinson’s.
5 G O L F T O U R N A M E N T
Judy and Don Longe
SATURDAY, JUNE 28, 2008
10am Registration
11:15am Mega Putt 11:30am
Starting Tee Times
$125 per player $500 per team
$1,500 Title Sponsorship
$750 Corporate Sponsorship
$150 Event Hole Signs
For further
infomation, contact Lisa Brovold
(402) 449-4535 (866) 626-7347
My name is Don Longe and I have Parkinson’s disease. I was diagnosed with Parkinson’s disease in 1993. I was forty-five years old and too young to have Parkinson’s disease or so I thought! My primary concern after my diagnosis was finding information about the disease and how it effects the body. I am still trying to find out all I can about Parkinson’s, not only for me but to help other people understand it better so they can realize the disease doesn’t usually ruin the rest of your life. That is why, when I had the opportunity to start this golf tournament and raise money for education, I jumped at it! Several years after my diagnosis my daughter, Heidi, was attending Physical Therapy School at University of Ne-braska Medical Center. She asked her instructors who was the best Neurologist for Parkinson’s disease and she was given the name of Dr. John Bertoni by several of her instructors. She said, “Dad, you have to go see Dr. Bertoni as he specializes in Parkinson’s.” In 1997 I had my first appointment with Dr. Ber-toni and learned a great deal about the disease. I have learned how important exercise is to keep yourself in the best shape possible and to keep yourself strong. I wanted to do whatever I could to help find a cure for the disease. So I volunteered for two different drug stud-ies done through Dr. Bertoni and the Neurology Department at Creighton University. Originally, one of Dr. Bertoni’s staff organized and ran a small golf tourna-ment as a social event. My family par-ticipated in this tournament for two years and then they discontinued it be-cause the staff member left Creighton. In 2004, I made the mistake of asking Dr. Bertoni if they were ever going to have the golf tournament again. He asked me if I would consider helping to organize the event and I agreed to help.
We had our first meeting at Creighton with Dr. Bertoni, Carolyn, Dr Bertoni‘s staff member, Lisa Brovold, Parkin-son’s Coordinator, Judy, my wife, and myself in 2005 to organize the event. We decided that we wanted to try to make it a tournament to raise money for the Parkinson’s disease education in Nebraska. The first tournament was held at In-dian Creek Golf course in Elkhorn on June 25, 2005. The first year, we made $1800. The second year, I drafted Terry Morrison into our organizational group to help us. We cleared $2500 after expenses. In 2007, Terry invited Cathy Nelson from LTS Leader Board to one of our organizational meeting for the tournament. We decided to have Cathy help us and we increased to 48 golfers, making $4000 after expenses. This year, 2008, we have added another board member, Alan Moore. Allen has Parkinson’s and doesn’t golf but his sons and daughter-in-law represent him. Our goal for this year is to in-crease the number of golfers to 70 as well as title and corporate sponsorship. Since the money we make from the golf tournament is used for the educa-tion throughout Nebraska for all Park-inson’s patients, I feel the time we do-nate for the cause is well worth it. I would encourage all of you, whether you’re a patient, spouse, family mem-ber, caregiver or friend to become in-volved to help educate and raise aware-ness for Parkinson’s disease. We would welcome anyone to join our or-ganizational board if they are inter-ested. If you are a golfer or your chil-dren golf, participate in the tournament. You can donate flag or auction prizes, sponsor a hole or be a corporate spon-sor. Everyone can be involved! We have to concentrate on controlling the disease and not letting the disease con-trol us!
6 A D V O C A C Y
On February 2-4, Monnie Lindsay and Colleen Wueb-ben attended the Parkinson’s Action Network’s 14th Annual Forum in Washington, D.C., along with nearly 300 other people with Parkinson’s and their loved ones. The Parkinson’s Action Network, or PAN, is finan-cially supported by all of the national Parkinson’s or-ganizations. PAN is the unified voice of all of those organizations in Washington, D.C. The Forum gener-ally includes two days of meetings educating attendees about issues of importance to Parkinson’s and then a day of meetings with Senators, Congressmen, and/or their staff members. The keynote speaker was Davis Phinney, a former pro-fessional cyclist, who won multiple stages of the Tour de France as well as an Olym-pic bronze medal. Davis was diagnosed with Parkinson’s in 2000. Davis spoke of stringing together those “curative mo-ments” each day—those moments when you are so focused on something else that you are not thinking about Parkinson’s. He also used an analogy from cycling where one cyclist will “draft” for another, or take the wind so that the second cyclist has an easier time. He said our families and friends can draft for those of us with Parkinson’s, but we still have to do our work. The rest of the two days of meetings centered around the three Forum “asks,” or the three areas of federal funding for Parkinson’s research that we were to ask our Senators and Members of Congress to support when we went up to Capitol Hill. Those three in-cluded: 1. supporting the Neurotoxin Exposure Treat-ment Research Program or NETRP; 2. fully funding the Food and Drug Administration; and 3. increasing the National Institutes of Health budget. The NETRP program through the Department of De-fense is the only Parkinson’s specific program in the federal government. It has a dual purpose: to examine the neurotoxins to which our troops are exposed to pre-vent them from developing Parkinson’s down the road and at the same time doing innovative Parkinson’s re-search. NETRP suffered a several million dollar cut in funding this past year and we are seeking an increase. One of the things we learned is that head injuries are associated with an increased risk of Parkinson’s. Trau-matic brain injury is a signature injury of the Iraq War. The Food and Drug Administration is an underfunded
federal agency, yet it is charged with regulating 25 cents of every dollar spent by U.S. consumers, ranging from eyeliner, to spinach, to prescription drugs. The FDA’s Chief Medical Officer, Janet Woodcock, spoke to us about the Critical Path Initiative, a program the FDA has developed to hopefully speed the process of bringing new prescription drugs to market. In order to do this, the FDA needs adequate funding. Thus, we asked our Senators and Representatives to support at least $2 billion in funding for the Food and Drug Ad-ministration, an increase of $275 million, especially for critical path drug development research funding. The National Institutes of Health are the largest funder of Parkinson’s research in the world. Yet, under the
NIH budget, funding for Parkinson’s re-search has dropped from $238 million in fiscal year 2003 to an estimated $205 mil-lion in fiscal year 2007. This year PAN asked that Congress support an increase in the total NIH budget of $1.6 billion, which will allow NIH to implement the reforms recently passed by Congress and ade-quately address the Parkinson’s commu-nity’s on-going efforts to enhance patient-oriented outcomes at NIH.
Those interested in watching a webcast of the Forum can go to www.parkinsonsaction.org. If you are interested in becoming involved in advocacy through PAN, you can sign up for Action Alerts at www.parkinsonsaction.org Action Alerts are email notifications of Parkinson’s matters we can take action on with respect to Congress. If you are interested in getting more involved, perhaps by attending the 2009 PAN Forum, please contact either Monnie Lindsay at [email protected] or Colleen Wuebben at [email protected]
SHAKING THINGS UP IN WASHINGTON, DC By Monnie Lindsay and Colleen Wuebben
Monnie says, “When you become an ad-vocate, you cease being a victim. Becoming a PAN advocate has given me a sense of control over my own destiny—I feel as though I am contributing something.”
Left to right: Monnie Lindsay, PAN Nebraska State Coordinator, Senator Chuck Hagel, Colleen Wuebben, Debbie Brooks, Co-Founder of the Michael J. Fox Foundation visiting on the Hill.
7
A Place to Belong... Beatrice Caprice Houdek – Facilitator Beatric Mennonite Church 1220 Summit (866) 366-2080 1st Monday at 10am Blair Susan McDunn – Facilitator Carter House 1028 JoAnn Drive (402) 426-1977 4th Wednesday at 1:30pm Columbus Virgil Chochon – Facilitator Columbus Community Hospital 4600 38th Street (402) 564-1438 2nd Thursday at 4pm (Every other month) Fairbury Lana Likens – Facilitator Jefferson Community Health Ctr. 2200 “H” Street (402) 729-3351 1st Monday at 10am Fremont Linda Parker – Facilitator Pathfinder House 3010 N. Clarkson (402) 721-7714 3rd Wednesday at 11:30am Gering Jack & Donna Johnson-Facilitators Northfield Villa 2550 21 Street (308) 235-2513 4th Wednesday at 1:30pm Grand Island Lori Mills – Facilitator Tiffany Care Center 3119 W. Faidley Avenue (308) 398-5322 1st Tuesday at 1:30pm Hastings Flossie Saathoff - Facilitator Mary Laning Hospital 715 N. St. Joseph Avenue (402) 462-9970 4th Wednesday at 2pm
Kearney Andy & Nevabelle Howe – Facilitators First United Methodist Church 4500 Linden Drive (308) 234-1570 2nd Tuesday at 2pm Lincoln Dellene Miller – Facilitator Madonna Rehab Center 54 and South Streets (402) 486-4810 4th Sunday at 2pm Early Onset Bruce & Kristi Griffith - Co-Facilitators Amy Zlotsky - Co-Facilitator (402) 449-2584 - Kristi (402) 423-2034 - Amy Call for day/time Nebraska City Sandi Rippe – Facilitator Morton House 1500 14th Avenue (402) 873-5551 4th Wednesday at 10:30am Norfolk Phil & Bonnie Sykes – Facilitators Lutheran Hospital Nebraska Rm. 2700 Norfolk Avenue (402) 371-6613 1st Tuesday at 2pm North Platte Carolyn Fear – Facilitator First United Methodist Church 1600 W. “E” Street (308) 534-7404 1st Monday at 7pm Omaha Ron & Maxine Kantor – Facs. Creighton Univ. Med. Center 601 N. 30 Street, Dining Rms A-C (402) 393-9169 3rd Thursday at 11:30am Caregiver’s Gathering Mary Mick - Facilitator APDA Nebraska Chapter Office 501 N. 87 Street, Suite 207 (402) 2nd Wednesday at 10am
Early Onset Katie Domayer – Co-Facilitator Colleen Wuebben - Co-Facilitator (402) 551-0602 - Katie (402) 397-0327 - Colleen Call for day/time Sioux City, Iowa Marilee Lynn - Facilitator Sioux Land Senior Center 217 Pierce (712) 389-2954 3rd Monday at 1pm Spencer Ray & Nellie Faye Hagberg–Facilitators Our Savior Lutheran Church 101 S. Whipple (402) 589-1576 3rd Tuesday at 2:30pm Stratton Wally & Gloria Gummere – Facilitators Grandview Retirement Center 903 Bailey Street (308) 276-2651 2nd Thursday at 4pm York Brenda Mumm/Rita Maloley – Facilitators York General Hospital 2222 Lincoln Avenue (402) 362-0426 or 362-0440 3rd Tuesday at 2pm Exercise Only – Omaha Melanie Clark, RPT – Co-Facilitator Linda Fuchs, RPT – Co-Facilitator St. Leo’s Church, 102 and Blondo (402) 391-4052 or 553-8242 Every Tuesday at 11am
NOMINATE your facilitator! Does your support group facilitator(s) de-serve a medal? Would you like to show your appreciation for them? Here is your opportunity! Send your nomination, describing the rea-sons you think they deserve to be honored to Lisa Brovold. Each year, there is an Annual Facilitator’s Meeting and the facilitator with the most nominations will receive a special award, recognizing their contribution.
Don’t wait - Do it Now!
8
601 North 30th Street Suite 2902C
Omaha, NE 68131
Phone: 866-626-PDIR (7347)
Fax: 402-449-4278 E-mail:
[email protected] www.parkinsonsne.org
APDA Information and Referral Center
The Nebraska Chapter and information and Referral Center has a new website! You can find all the current events and educational activities happening in Nebraska. You can also get information on clinical studies and other valuable resources pertaining to Parkinson’s disease.
www.parkinsonsne.org
CHECK IT OUT!!!
NEW WEBSITE!
ADDRESS CORRECTION REQUESTED
Dedicated to ease the burden and find the cure
APDA Nebraska Chapter
501 N. 87th Street Suite 207
Omaha, NE 68114 (402) 392-APDA (2732)
All memorials/donations are tax deductible. Checks should be made payable to the APDA and sent to this address.