November 2008 - Creighton University School of Medicine
November 2008 - Creighton University School of Medicine
November 2008 - Creighton University School of Medicine
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Medical Director<br />
John Bertoni, MD, PhD<br />
Coordinator<br />
Lisa A. Brovold<br />
Nebraska Chapter<br />
Mary Egger, President<br />
Mary Jane Petersen,<br />
Secretary<br />
Bev Baker, Treasurer<br />
———————————<br />
Parkinson’s Progress report<br />
is published quarterly as<br />
an information guide<br />
only. The newsletter does<br />
not serve as legal or medical<br />
advice.<br />
Inside this issue:<br />
APDA 44 Years 1<br />
Later<br />
APDA<br />
INFORMATION<br />
AND<br />
REFERRAL<br />
44 Years Later cont. 2<br />
Message regarding<br />
the Medical Director<br />
Contemplations<br />
from a Car Weary<br />
Coordinator<br />
Three Facilitators<br />
Honored for<br />
3<br />
3<br />
Events <strong>2008</strong> 4<br />
Education <strong>2008</strong> 5<br />
6<br />
A Place to Belong 7<br />
Gifts 8<br />
FYI 9<br />
Save the Date<br />
10<br />
Parkinson’s Progress report<br />
VOLUME IV ISSUE I I <strong>November</strong> <strong>2008</strong><br />
The American Parkinson Disease Association, Inc.<br />
44 YEARS LATER<br />
The Nebraska Parkinson’s Information and<br />
Referral Center (I&R) was opened in January<br />
2005. Previously, it had been operated in the<br />
private sector by a family with an interest in Parkison’s<br />
disease. They retired in 2004 and Dr. Bertoni<br />
became Medical Director <strong>of</strong> the I&R Center<br />
in 2005.<br />
With the hiring <strong>of</strong> a coordinator, the Center<br />
has stretched its arms to reach clear across the<br />
state <strong>of</strong> Nebraska. There are support groups in<br />
the north, south, east and west as well as central<br />
Nebraska. Rural areas can now receive current<br />
educational information by participating in the<br />
teleconferences. In <strong>2008</strong>, over 540 individuals<br />
were educated through this method, providing<br />
them with the tools they need to live an optimal<br />
quality <strong>of</strong> life. A website has now been developed,<br />
www.parkinsonsne.org, where patients,<br />
family members and caregivers can access current<br />
information about events and educational<br />
programs happening in their state and local area.<br />
Resources and media learning tools are available<br />
through the Center for individuals wanting<br />
more knowledge about Parkinson’s disease.<br />
With the introduction <strong>of</strong> the I&R Center, the Parkinson’s<br />
community is now better equipped and<br />
educated than ever.<br />
If it weren’t for the sponsorship <strong>of</strong> the national<br />
American Parkinson Disease Association<br />
(APDA), located in Staten Island, New York, the<br />
Nebraska I&R Center would not exist, nor would<br />
it have accomplished all the achievements listed<br />
above. It is, therefore, important that every Nebraskan<br />
in the Parkison’s community understand<br />
the history and involvement <strong>of</strong> the APDA and<br />
how it supports what is being done in our state.<br />
The American Parkinson Disease Association<br />
(APDA) was <strong>of</strong>ficially recognized as a not-forpr<strong>of</strong>it<br />
organization by the State <strong>of</strong> New York in<br />
1964. APDA is unique in its dual mission <strong>of</strong> providing<br />
information, education and support directly<br />
to Parkinson’s patients and their caregivers, and<br />
also as a major contributor to pioneering Parkinson’s<br />
disease (PD) research.<br />
Since its inception, APDA has been a funding<br />
partner in every scientific breakthrough in understanding<br />
the cause and progress towards a cure<br />
for PD. Included in that research was the pioneering<br />
work <strong>of</strong> Dr. Roger C. Duvoisin, a chairman<br />
<strong>of</strong> the APDA Scientific Advisory Board<br />
(SAB) that pinpointed the location <strong>of</strong> a gene responsible<br />
for PD at Robert Wood Johnson Medical<br />
<strong>School</strong>, New Jersey, in 1997.<br />
APDA’s funding methodology is driven by its<br />
SAB, composed by 16 <strong>of</strong> the country’s leading<br />
physicians and scientists, experts in Parkinson’s<br />
disease and movement disorder research diagnosis<br />
and treatment. Now chaired by G. Frederick<br />
Wooten, MD, department <strong>of</strong> neurology at the<br />
<strong>University</strong> <strong>of</strong> Virginia Medical Center, the board<br />
includes representation from leading research<br />
and medical centers across the country including<br />
the UCLA Medical <strong>School</strong>, Emory <strong>University</strong><br />
<strong>School</strong> <strong>of</strong> <strong>Medicine</strong>, the Mayo Clinic Jacksonville,<br />
the <strong>University</strong> <strong>of</strong> Wisconsin, the UMDNJ/Robert<br />
Wood Johnson Medical Center, Boston <strong>University</strong><br />
<strong>School</strong> <strong>of</strong> <strong>Medicine</strong>, Washington <strong>University</strong>,<br />
Johns Hopkins Medical <strong>School</strong>, the <strong>University</strong> <strong>of</strong><br />
Alabama and the <strong>University</strong> <strong>of</strong> Chicago. The<br />
board’s composition is designed to represent<br />
expertise in all areas <strong>of</strong> PD research providing a<br />
knowledgeable panel to evaluate the more than<br />
100 grant applications submitted for funding each<br />
year.<br />
APDA support is <strong>of</strong>fered to encourage research<br />
at all levels. Nine Centers for Advanced<br />
Research across the United States (Boston <strong>University</strong><br />
<strong>School</strong> <strong>of</strong> <strong>Medicine</strong>, Emory <strong>University</strong><br />
<strong>School</strong> <strong>of</strong> <strong>Medicine</strong>, UCLA <strong>School</strong> <strong>of</strong> <strong>Medicine</strong>,<br />
UMDNJ-Robert Wood Johnson Medical <strong>School</strong>,<br />
the <strong>University</strong> <strong>of</strong> Virginia Medical Center, the<br />
<strong>University</strong> <strong>of</strong> Pittsburgh, the <strong>University</strong> <strong>of</strong> Chicago,<br />
the <strong>University</strong> <strong>of</strong> Alabama, and the Washington<br />
<strong>University</strong> Medical Center) receive a multiyear<br />
$125,000 annual award, and their scientific<br />
activity is reviewed and evaluated at the SAB<br />
meeting each spring.<br />
Continued on page 2
H I S T O R Y<br />
The George C.<br />
Cotzias, MD Memorial<br />
Fellowship, named after a pathfinder<br />
in the pharmacological exploration<br />
<strong>of</strong> brain functions and in the<br />
treatment <strong>of</strong> PD with levadopa, is a<br />
three-year annual award <strong>of</strong> $80,000<br />
to assist promising young neurologists<br />
in establishing careers in research,<br />
teaching and clinical services<br />
relevant to the cause, prevention,<br />
diagnosis and treatment <strong>of</strong> PD<br />
and related neurological movement<br />
disorders. It is considered APDA’s<br />
most prestigious individual award.<br />
Established scientists affiliated<br />
with research or academic institutions<br />
and presently not working on<br />
PD research are eligible for the<br />
Roger C. Duvoisin, MD Research<br />
Grant. The grant carries a two-year,<br />
$80,000 annual award.<br />
Other funding is available as<br />
research grants ($50,000 for one<br />
year) for young investigators to pursue<br />
research in PD; post-doctoral<br />
research fellowships ($35,000 for<br />
one year) available to post-doctoral<br />
scientists whose research training<br />
holds promise into new insights in<br />
patho-physiology, etiology and/or<br />
treatment <strong>of</strong> PD; and medical students<br />
summer fellowships designed<br />
to provide a stipend to medical students<br />
to perform supervised laboratory<br />
or clinical research in PD. The<br />
fellowship is $4,000.<br />
At its meeting in May 2007, the<br />
SAB recommended more than $3.5<br />
million in grants, which was unanimously<br />
approved by the executive<br />
committee <strong>of</strong> the national board <strong>of</strong><br />
directors.<br />
Equally important and unique<br />
among U.S. PD organizations is the<br />
APDA mission to support and educate<br />
the country’s 1.5 millions with<br />
Parkinson’s disease and their caregivers.<br />
Recognizing the devastating<br />
effects <strong>of</strong> the illness upon the patient<br />
and the family, a support program<br />
was launched to motivate patients<br />
in maximizing their strengths,<br />
minimizing impediments and achieving<br />
and maintaining their full potential<br />
for as long as possible.<br />
Through a network <strong>of</strong> chapters,<br />
which raise awareness and funds;<br />
Information and Referral centers,<br />
each staffed with a medical director<br />
and a coordinator; and more than<br />
1000 support groups, APDA provides<br />
a comprehensive support and<br />
educational system for patients and<br />
caregivers. There are presently 56<br />
chapters and 62 I&R centers located<br />
in major healthcare and academic<br />
facilities across the country,<br />
making it the largest grassroots PD<br />
organization in the United States.<br />
In 2007, APDA opened the<br />
country’s first full-time national<br />
young onset center to serve the<br />
unique challenges <strong>of</strong> young people<br />
faced with the progressive, degenerative<br />
disease. The center’s director<br />
is Julie Sacks, a clinical social<br />
worker with more than a decade <strong>of</strong><br />
experience working with individuals<br />
<strong>of</strong> all ages and their families. The<br />
center is located in the Chicago,<br />
Illinois area and serves the entire<br />
country. Its website is<br />
www.youngparkinsons.org.<br />
APDA also maintains a dedicated<br />
I&R center for U.S. Armed<br />
Forces veterans and their families.<br />
Located in Reno, Nevada. The center’s<br />
mission is to disseminate information<br />
about services available to<br />
veterans with PD in their home communities<br />
and to serve as a resource<br />
for information about government<br />
benefits available for Parkinson’s<br />
disease patients.<br />
Education is a primary function<br />
<strong>of</strong> the organization and is provided<br />
through a quarterly newsletter,<br />
which is mailed to more than<br />
200,000 people internationally. A<br />
series <strong>of</strong> publications includes multipage<br />
booklets written by experts in<br />
specific fields such as symptoms<br />
and medications, support, physiotherapy,<br />
speech problems, and nutrition.<br />
Many <strong>of</strong> these educational<br />
materials have been translated into<br />
other languages and all are available<br />
free <strong>of</strong> charge. Educational<br />
supplements dealing with specific<br />
subjects related to PD are issued as<br />
the need may arise.<br />
“Managing Parkinson’s - Straight<br />
Talk and Honest Hope,” is a DVD<br />
created for the newly diagnosed<br />
patient and his/her loved ones.<br />
2<br />
Leading experts explain what PD is<br />
and how it is treated, how to deal<br />
with symptoms <strong>of</strong> the disease, some<br />
<strong>of</strong> the medications’ side effects and<br />
how to keep a positive outlook in<br />
dealing with it.<br />
APDA works collaboratively with<br />
other US Parkinson’s organizations<br />
with similar objectives including the<br />
Parkinson’s Action Network, a national<br />
advocacy association based<br />
in the nation’s capital, PD Trials, a<br />
Web-based service to inform patients<br />
<strong>of</strong> existing clinical trials and to<br />
encourage participation and the Michael<br />
Fox Foundation to support a<br />
PD registry in the state <strong>of</strong> Nebraska.<br />
Encouraging global cooperation,<br />
APDA was the co-sponsor, with the<br />
Italian Parkinson Disease Association<br />
<strong>of</strong> the World Parkinson Disease<br />
Association (WPDA), organized in<br />
<strong>November</strong> 1998. Today, 26 national<br />
affiliates from six continents<br />
work cooperatively to disseminate<br />
the latest information about the progress<br />
<strong>of</strong> PD research, therapy, and<br />
all vital information about the disease<br />
within their countries. Dr. Paul<br />
Maestrone, APDA director <strong>of</strong> scientific<br />
and medical affairs and a<br />
WPDA founder, is the president <strong>of</strong><br />
this association.<br />
APDA is proud <strong>of</strong> its diverse<br />
contributions to the Parkinson’s patients<br />
<strong>of</strong> the United States and <strong>of</strong><br />
foreign countries and the dedication<br />
to pursue its mission to “Ease the<br />
Burden - Find the Cure” for Parkinson’s<br />
disease.<br />
This article was compiled from the<br />
<strong>of</strong>ficial history <strong>of</strong> APDA and was<br />
published in the Spring <strong>2008</strong> issue<br />
<strong>of</strong> the APDA newsletter. It has been<br />
reprinted with permission.<br />
National APDA Headquarters
Message regarding the Medical Director<br />
Nebraska has three Movement Disorder Specialists in the state. Dr. John<br />
Bertoni is one <strong>of</strong> the Movement Disorder specialists. Beginning December 1,<br />
<strong>2008</strong>, Dr. Bertoni will be transitioning to a new <strong>of</strong>fice location. As patients and<br />
their families, you may have already experienced the transition, especially when<br />
recently calling to schedule an appointment. Please do not be dismayed, you<br />
can schedule an appointment with him by contacting (402) 559-8600 after<br />
John M. Bertoni, MD, PhD January 1, 2009. The clinic will be located at the Doctors North Tower, 4242<br />
Farnam Street, Suite 650. Dr, Bertoni would like to thank you for your patience<br />
and understanding during this transition time.<br />
AROUND<br />
NEBRASKA<br />
IN NINETY<br />
DAYS!<br />
I don’t know what I was thinking when I decided to<br />
embark on this adventure. Maybe I thought I would imitate<br />
Charles Kuralt. However, instead <strong>of</strong> traveling the<br />
United States, I would start smaller - Nebraska seemed<br />
like a good place to begin.<br />
So I began my first part <strong>of</strong> the journey by visiting the<br />
support groups in the southeast part <strong>of</strong> the state. In Lincoln,<br />
I had the very first <strong>of</strong> many picnics to come. Dellene<br />
and her group were warm and welcoming. It was a<br />
great time <strong>of</strong> sharing and learning from each other.<br />
From there, I traveled to Beatrice and then onto Falls<br />
City. Did you know that Falls City is smaller than Beatrice?<br />
I didn’t until I arrived there. I spent two days educating<br />
the community as well as the medical pr<strong>of</strong>essionals.<br />
Finally, I headed back north to Nebraska City—<br />
what a beautiful place with Arbor Lodge and apple trees<br />
everywhere.<br />
My next trip was to head out west. Now to get<br />
across the state takes a little over eight hours! I started<br />
in North Platte with Carolyn, sharing a picnic <strong>of</strong> good<br />
home cooked food. I learned more about Buffalo Bill<br />
Cody while I was there. The next day, we had our first<br />
meeting in McCook. Twenty-eight people attended the<br />
meeting, which was very exciting! I visited with Flossie<br />
and Lorraine in Hastings the following day, sharing updated<br />
information with their hungry group <strong>of</strong> people.<br />
While we were there, my son decide to create some excitement<br />
himself. He slammed his head into a pole and<br />
cut a slice into it. He had blood everywhere and, <strong>of</strong><br />
course, all the grandmas and pas wanted to make certain<br />
he was okay. He was and he loved the attention.<br />
Moving west past Sydney, Nebraska - the home <strong>of</strong> Ca-<br />
CONTEMPLATIONS FROM A<br />
CAR-WEARY COORDINATOR<br />
bella’s - we spent a fun-filled day with Jack and Donna’s<br />
two groups. Again, eating more food than is normal for<br />
human consumption. Finally, turning the car east towards<br />
home, I felt the satisfaction <strong>of</strong> knowing we have a<br />
strong network <strong>of</strong> support for the Parkinson’s community<br />
throughout central and western Nebraska.<br />
My final trip was to the northeast section <strong>of</strong> the state.<br />
I visited the Sykes in Norfolk and found that the hospital<br />
is expanding. On my way home, I stopped in Columbus<br />
to touch base with Virgil and Elaine. The following<br />
week, I traveled along the Niobrara to visit Ray and<br />
Nellie Faye in Spencer. It is a beautiful drive. The<br />
Spencer group is always so warm and fuzzy and I hated<br />
to leave them. However, my drive home was a different<br />
story. I found myself dodging high winds, tornados and<br />
rain so heavy you couldn’t see in front <strong>of</strong> you. I was<br />
elated to finally arrive at home. Alas, Fremont was my<br />
last stop for the summer. We had a wonderful time<br />
learning from each other there.<br />
Nebraska is full <strong>of</strong> great people. Even though I<br />
am not in a hurry to travel the whole state again, I cherished<br />
the opportunity to meet so many kind and generous<br />
people and to play a small part in making their lives<br />
better. It is an awesome privilege to be a part <strong>of</strong> Nebraska’s<br />
Parkinson’s community. While I may have the<br />
chance to educate and assist you, I receive so much<br />
more in return. You, individually, bring a special contribution<br />
to the community and to the cause. Thank you<br />
for making this adventure so special.<br />
I didn’t make it to some groups. However, I will be<br />
planning to do so in the future - just not this year ☺<br />
3
Walk-A-Thon<br />
E V E N T S<br />
The Annual Walk-a-thon took place on Sunday,<br />
June 1st in Elmwood Park. The day was<br />
spectacular with a crowd <strong>of</strong> over 400 peo-<br />
ple attending the event to raise awareness<br />
and support for Parkinson’s disease. Children<br />
soared to new heights in the bounce house while parents<br />
enjoyed the live entertainment with the Country Kickers displaying<br />
their dance moves. A bevy <strong>of</strong> beauty queens were the delight <strong>of</strong><br />
tween and teen girls as they signed autographs and gave out beauty<br />
tips. The walk got underway with Carol Wang, news anchor from<br />
Action 3 News starting it <strong>of</strong>f. Upon returning from the walk, all participants<br />
were fed hot dogs, chips, fruit<br />
and a drink. Wrap- ping up the activities,<br />
Carol announced the winners <strong>of</strong> the<br />
raffle prizes. The Walk brought in<br />
$25,500 which goes for research. Thank<br />
you for making the walk such a success.<br />
Weitz<br />
Volleyball<br />
Weitz Construction Annual Volleyball Tournament<br />
netted support in the amount <strong>of</strong><br />
$34,000 this year. This is the sixth year that<br />
Weitz has hosted the event, inviting their<br />
vendors to participate in the tournament. The<br />
tournament’s inception began with an employee who had Parkinson’s<br />
and co-workers wanting a way to help support him in raising<br />
awareness and contributions to fight the disease. Over the past<br />
years, Weitz has contributed over $146,000 to help ease the burden<br />
and find a cure for Parkinson’s. Their donations have helped to promote<br />
education throughout the state <strong>of</strong> Nebraska, provide resources<br />
to the 22 support groups, assist with administrative costs<br />
and help the Chapter in their marketing functions.<br />
Weitz was honored this year at the Hand in Hand, Linking Lives<br />
for Parkinson’s event for their dedication and support for Parkinson’s<br />
disease.<br />
Golf<br />
Tournament<br />
The <strong>2008</strong> Annual Parkinson’s Golf Tournament<br />
was a success despite Mother Nature’s<br />
attempt to blow it away. On Friday,<br />
June 27th, high winds <strong>of</strong> 100 mph blew<br />
t h r o u g h Elkhorn, causing destruction and damage<br />
along its path. The next morning, Indian Creek Golf Course informed<br />
the Golf Committee that they would not be able to host the<br />
tournament. Thankfully, a friend with a connection to ArborLinks in<br />
Nebraska City was able to get them to accommodate the tournament.<br />
With quick response, the majority <strong>of</strong> the golfers were notified,<br />
with 58 players out <strong>of</strong> 80 registered participating. The event<br />
brought in over $4,000 which is not too bad considering the kind <strong>of</strong><br />
start it had to overcome.<br />
The funds raised from the Golf Tournament support education<br />
and empowerment programs for Parkinson’s throughout the state.<br />
4<br />
2009<br />
GOLF TOURNAMENT<br />
SATURDAY,<br />
JUNE 27, 2009<br />
Himark Golf Course<br />
Lincoln, Nebraska<br />
10am<br />
Registration<br />
11:15am<br />
Starting Tee Times<br />
<br />
$110 per player<br />
$440 per team<br />
Sponsorships available<br />
<br />
For further<br />
information, contact<br />
Lisa Brovold<br />
(402) 449-4535<br />
(866) 626-7347<br />
labrovo@creighton.edu<br />
AND<br />
THEY<br />
ARE<br />
OFF!
NORTH<br />
PLATTE<br />
SYMPOSIUM<br />
E D U C A T I O N<br />
The symposium for Parkinson's Disease was a 'total success.' We had over 70<br />
medical personnel attend the symposium. Comments that I heard were,<br />
"Wonderful, Informative, Awesome and Great".<br />
My ABC's <strong>of</strong> the Parkinson's Disease Symposium held in at North Platte, Nebraska are:<br />
Awareness: The symposium made us more aware <strong>of</strong> the disease process <strong>of</strong> Parkinson's. It made<br />
us aware that Parkinson's disease is manifested in many ways, not just a tremor. We were educated in<br />
regards to some <strong>of</strong> the very early signs <strong>of</strong> Parkinson's disease that can be recognized before the diagnosis<br />
is made. We cannot exclude the possibility <strong>of</strong> Parkinson’s because <strong>of</strong> a person’s age.<br />
Better Understanding: We now have a better understanding <strong>of</strong> how Parkinson's disease affects<br />
the person with Parkinson's and their family. The person with PD has to make adjustments in their daily<br />
lives, their social activities and their careers. The person with PD and their families need support and understanding.<br />
Current Treatments: The symposium updated us with the common medications that are prescribed<br />
and also introduced us to the new medications that are being used. We reviewed the purpose <strong>of</strong><br />
drug therapy, the dosages and their effect on Parkinson's disease. The possible side effects were also<br />
discussed. We were reminded that not all medications work the same in every person with PD. Many<br />
times the drug therapy is a trial period and has to be adjusted or changed to meet the needs <strong>of</strong><br />
the individual person.<br />
We learned the purpose <strong>of</strong> DBS and how some persons with PD can be treated successfully and be<br />
able to function better.<br />
Complimentary therapies: We were told about the complimentary therapies that can be used to<br />
benefit the Parkinson's person; Physical therapy to help the PD person with balance and coordination.<br />
Occupational therapy can help to enhance their fine motor function. Massage, Yoga, and Reiki can<br />
help with relaxation <strong>of</strong> the muscles. Speech therapy can be used to aid swallowing problems.<br />
Diagnosis: We were reminded how important it is for a person to be referred to a movement disorder<br />
specialist for a complete evaluation, history and examination for a diagnosis <strong>of</strong> Parkinson's disease.<br />
Diagnosis can only be made clinically, since Parkinson's disease cannot be determined by doing an X-<br />
Ray, MRI or CT. These diagnostic tools can, however, rule out other neurological problems.<br />
As a Registered Nurse, I am glad I attended the symposium. It was very informative and educational.<br />
The medical pr<strong>of</strong>ession needs to be aware <strong>of</strong> and recognize the possible signs, symptoms and<br />
effects <strong>of</strong> Parkinson's disease. An early diagnosis may give the person with PD a longer and more productive<br />
life. It may give the person with PD a better prognosis.<br />
Thank you, Lisa and the Nebraska Chapter for bringing the symposium to Central and Western Nebraska.<br />
Carolyn Fear, RN and support group facilitator<br />
PARKINSON’S EMPOWERMENT PROGRAMS<br />
Parkinson’s Empowerment Programs (PEP) have developed over the years. The Nebraska Parkinson’s<br />
I&R Center currently has six educational teleconferences a year. In 2009, topics will include LSVT – Loud<br />
speech therapy, Gadgets and Gizmos - aids to make life easier, Depression and PD, Non-Motor Symptoms,<br />
Faith in the Face <strong>of</strong> Physical Limitations and, an all-time favorite, the First Person Perspective<br />
Panel. Experts in each field will present the program, which will be broadcast from Omaha to a location<br />
close to you. Please check the website, www.parkinsonsne.org for more specific details.<br />
A new educational program, sponsored by funds raised through the Hand in Hand, Linking Lives<br />
for Parkinson’s campaign, is the “Living the Good Life with Parkinson’s” training session. This<br />
training session will be designed for the newly or currently diagnosed patient who has had no in-depth<br />
teaching regarding Parkinson’s disease and its progression. The session will begin in untapped communities<br />
<strong>of</strong> Nebraska, such as Chadron, Alliance, Valentine and Holdrege. Check the website for the date and<br />
location information. An exciting year for educational opportunities lies ahead for 2009!<br />
5
SUPPORT GROUPS<br />
Three Facilitators Honored for Dedication<br />
By Lisa Brovold<br />
Nebraska is fortunate to have a wealth <strong>of</strong><br />
leadership and commitment in the individuals<br />
who facilitate the Parkinson’s<br />
support groups. With 22 support groups<br />
throughout the state, it is a relief<br />
to know that they are being<br />
led by people who have a passion<br />
to help others and some<br />
who have a personal experience<br />
with Parkinson’s disease.<br />
These facilitators give <strong>of</strong> their<br />
time to organize and manage<br />
the group so others can participate<br />
and enjoy the experience,<br />
so they can learn more<br />
about the disease and begin to get a<br />
sense <strong>of</strong> control. The facilitators are the<br />
comforters, encouragers, educators, and<br />
motivators for the members in their<br />
groups. They are usually the first contact<br />
for a newly diagnosed person and their<br />
family. They do a lot with little recognition<br />
or reward.<br />
On Thursday, October 16th, at the Annual<br />
Facilitators’ Meeting, Lisa Brovold took<br />
the opportunity to recognize three facilitators<br />
for their contributions to the Parkinson’s<br />
Support Group Network in Nebraska.<br />
Realizing that all the attendees<br />
were deserving <strong>of</strong> an award, she had the<br />
difficult task <strong>of</strong> chosing only three.<br />
Dellene Miller, facilitator for the Lincoln<br />
support group, has been involved with the<br />
Parkinson’s community for approximately<br />
29 years. Her husband, Karl was diagnosed<br />
with Parkinson’s in 1978. They<br />
joined a group in 1979 that met at the<br />
Methodist Church. They also became a<br />
part <strong>of</strong> a special young onset group with<br />
members from all over the state: North<br />
Platte, Kearney, Sutton, York and Beatrice<br />
to name a few. This group would<br />
plan outings over a weekend for the entire<br />
family. They grew to be a very close<br />
Dellene Miller, Lincoln SG<br />
knit “family” and still have that special<br />
connection.<br />
Dellene took over the Lincoln support<br />
group in 2002. Unlike many spouses,<br />
even after Karl’s death in<br />
2005, Dellene has continued to<br />
facilitate the Lincoln group.<br />
For her generous dedication<br />
to the Parkinson’s community,<br />
Dellene was presented with<br />
the Above and Beyond award.<br />
We are so grateful for her generosity!<br />
Jack and Donna Johnson have lead the<br />
Panhandle support group for over nine<br />
years. Jack was diagnosed with Parkinson’s<br />
disease in 1999. He started attending<br />
a support group in Cheyenne, Wyoming<br />
and after a year, decided to start<br />
one in his neck <strong>of</strong> the woods. The group<br />
now has people coming from Gering, Kimball,<br />
Alliance, Chadron, Scottsbluff and,<br />
yes, Wyoming!<br />
Jack and Donna do not hesitate to go and<br />
pick up their members so they can attend<br />
the meetings. Once a year, they host a<br />
picnic for both support groups and make<br />
all the fixings. They can do this because<br />
between them they have eight children<br />
and many more grandchildren! For their<br />
pioneer spirit and leadership, Jack and<br />
Donna were honored with the Above and<br />
Beyond award. They will be handing <strong>of</strong>f<br />
the groups to new leaders but we hope<br />
they will stay in touch. Thank you both for<br />
everything!<br />
Donna and Jack Johnson<br />
Pandhandle Support Group<br />
6
A Place to Belong...<br />
Beatrice<br />
Harold Brown – Facilitator<br />
Good Samaritan<br />
1306 S. 9th Street<br />
(866) 421-0816<br />
1 st Monday at 10am<br />
Blair<br />
Facilitator<br />
Carter House<br />
1028 JoAnn Drive<br />
(402) 426-1977<br />
4 th Wednesday at 1:30pm<br />
Columbus<br />
Virgil Chochon – Facilitator<br />
Columbus Community Hospital<br />
4600 38 th Street<br />
(402) 564-1438<br />
2 nd Thursday at 1:30pm<br />
Fairbury<br />
Lana Likens – Facilitator<br />
Jefferson Community Health Ctr.<br />
2200 “H” Street<br />
(402) 729-3351<br />
1 st Monday at 10am<br />
Fremont<br />
Facilitator<br />
Pathfinder House<br />
3010 N. Clarkson<br />
(402) 721-7714<br />
3 rd Wednesday at 11:30am<br />
Gering<br />
Jack & Donna Johnson-Facilitators<br />
Northfield Villa<br />
2550 21 Street<br />
(308) 235-2513<br />
4 th Wednesday at 1:30pm<br />
Grand Island<br />
Rhonda McGuire – Facilitator<br />
Tiffany Care Center<br />
3119 W. Faidley Avenue<br />
(308) 398-5322<br />
1 st Tuesday at 1:30pm<br />
Hastings<br />
Flossie Saath<strong>of</strong>f - Facilitator<br />
First St. Paul Lutheran<br />
918 W. 4th Street<br />
(402) 462-9970<br />
4 th Wednesday at 2pm<br />
Kearney<br />
Andy & Nevabelle Howe – Facilitators<br />
First United Methodist Church<br />
4500 Linden Drive<br />
(308) 234-1570<br />
2 nd Tuesday at 2pm<br />
Lincoln<br />
Dellene Miller – Facilitator<br />
Madonna Rehab Center<br />
54 and South Streets<br />
(402) 486-4810<br />
4 th Sunday at 2pm<br />
Early Onset<br />
Bruce & Kristi Griffith - Co-Facilitators<br />
(402) 449-2584 - Kristi<br />
Call for day/time<br />
McCook<br />
Wally & Gloria Gummere – Facilitators<br />
Community Hospital<br />
1301 E. “H” Street<br />
(308) 276-2651<br />
3rd Monday at 7pm<br />
Nebraska City<br />
Sandi Rippe – Facilitator<br />
Morton House<br />
1500 14 th Avenue<br />
(402) 873-5551<br />
4 th Wednesday at 10:30am<br />
Norfolk<br />
Phil & Bonnie Sykes – Facilitators<br />
Lutheran Hospital Nebraska Rm.<br />
2700 Norfolk Avenue<br />
(402) 371-6613<br />
1 st Tuesday at 2pm<br />
North Platte<br />
Carolyn Fear – Facilitator<br />
First United Methodist Church<br />
1600 W. “E” Street<br />
(308) 534-7404<br />
1 st Monday at 7pm<br />
Omaha<br />
Ron & Maxine Kantor – Facs.<br />
<strong>Creighton</strong> Univ. Med. Center<br />
601 N. 30 Street, Dining Rms A-C<br />
(402) 393-9169<br />
3 rd Thursday at 11:30am<br />
7<br />
Caregiver’s Gathering<br />
Mary Mick - Facilitator<br />
APDA Nebraska Chapter Office<br />
501 N. 87 Street, Suite 207<br />
(402) 449-4535<br />
2 nd Wednesday at 10am<br />
Early Onset<br />
Katie Domayer – Co-Facilitator<br />
Colleen Wuebben - Co-Facilitator<br />
(402) 551-0602 - Katie<br />
(402) 397-0327 - Colleen<br />
Call for day/time<br />
Evening<br />
Lisa Brovold<br />
APDA Nebraska Chapter <strong>of</strong>fice<br />
501 N. 87 Street, Suite 207<br />
(402) 449-4535<br />
4th Monday at 6:30pm<br />
Sioux City, Iowa<br />
Marilee Lynn - Facilitator<br />
Sioux Land Senior Center<br />
217 Pierce<br />
(712) 389-2954<br />
3 rd Monday at 1pm<br />
Spencer<br />
Ray & Nellie Faye Hagberg–Facilitators<br />
Our Savior Lutheran Church<br />
101 S. Whipple<br />
(402) 589-1576<br />
3 rd Tuesday at 2:30pm<br />
York<br />
Brenda Mumm/Rita Maloley – Facilitators<br />
York General Hospital<br />
2222 Lincoln Avenue<br />
(402) 362-0426 or 362-0440<br />
3 rd Tuesday at 2pm<br />
Exercise Only – Omaha<br />
Melanie Clark, RPT – Co-Facilitator<br />
Linda Fuchs, RPT – Co-Facilitator<br />
St. Leo’s Church, 102 and Blondo<br />
(402) 391-4052 or 553-8242<br />
Every Tuesday at 11am<br />
Fitness Works<br />
Jacey Gengenbach, NSCA - CPT<br />
1032 S. 74th Plaza<br />
(402) 934-8881<br />
Monday: 12pm - 1pm<br />
Tuesday: 6pm - 7pm<br />
Saturday: 9am - 10am
G I F T S<br />
Memorial:<br />
Kenneth Arch<br />
Andrea Hoig<br />
Alan Barney<br />
Bob Barney<br />
Ann Philson<br />
Milton Brighton<br />
Brian & Cindy Brigham<br />
Christopher Columbus<br />
Society Inc.<br />
Deloris Ellison<br />
Ronald & Lind Gerst<br />
Wayne & Joan John<br />
Stan & Fran Bonk<br />
Darlene Bart<br />
Helga Casser-Zohren<br />
Warren & Margaret<br />
Fredrickson<br />
Kim Winther<br />
Lois Wright<br />
Richard Dannelly<br />
Gertrude Dannelly<br />
Joan Dietrick<br />
Thomas & Maryann Balla<br />
Ervin & Joan Deitrick<br />
Kenneth & Shirley Dermann<br />
Joseph & Catherine<br />
Dorenbach<br />
Lawrence & Dorothy Glaser<br />
Shirley Hartley<br />
Edgardo Katigbak<br />
Gale Marsh<br />
Teresa Pegler<br />
William & Dorothy Reinsch<br />
Ida Mae Siefkes<br />
Alan & Sharon Smith<br />
Rip & Elaine Van Winkle<br />
Norrie Egger<br />
Beverly Baker<br />
Tim & Amy Harrington<br />
Ron & Carol Kopiasz<br />
Bob, Sandy & Bobby<br />
Kreifels<br />
Dave & Bev Kudron<br />
Ron & Ann Kudron<br />
Mike & Elaine McGuire<br />
Mike & Mary Jane Maguire<br />
Peggy Michaelsen<br />
Mike & Jayne Molacek<br />
Wayne & Colleen Morris<br />
Bob & Judy Zimmer<br />
Luke Heckman<br />
Arthur & Ruth Albright<br />
Teryl & Norma Bohwski<br />
Tony & Patricia Brown<br />
Iris & Jean Doksansky<br />
Barbara Fanning<br />
Ruth Farrenkopf<br />
Junior & Doris Gregerson<br />
Donna Heckman<br />
Susan Heckman<br />
Lois Kimbrell<br />
Coleen Kingsley<br />
Nicki McIntyre<br />
James & Lynda Moser<br />
Beulah Petersen<br />
Chris & Marilyn Petersen<br />
Emma Shada<br />
Clayton & Diane Skurdahl<br />
Michael Thomas<br />
Richard Heim<br />
Ernest & Mary Arrigo<br />
Duane & Ruth Ann Burd<br />
Eunice Hingst<br />
Alvin Hingst<br />
Peter Hoagland<br />
Helen Muskin<br />
Robert Guiles<br />
Fae Guile<br />
Deloris Keating<br />
Raymond & Nellie Faye<br />
Hagberg<br />
Lloyd Klebe<br />
Danile Daily<br />
Hilma Klebe<br />
Roger & Sandra Mills<br />
John & Nancy Olsson<br />
Vicki Sheridan<br />
Opal McNurlin<br />
Richard & Mary Annin<br />
William & Lois Annin<br />
Darwin & Vicki Garton<br />
George Muchacek<br />
Weston & Gloria Hill<br />
Willow Olsen<br />
Blue Cross Blue Shield <strong>of</strong><br />
Nebrasla<br />
Catherine Lane<br />
Dennis Murphy<br />
Buddy & Geraldine Novak<br />
Richard & Patricia Nowak<br />
Howard & Mary Ann Shipley<br />
Evelyn Peterson<br />
Larry & Frieda Calhoon<br />
Marvin & Betty Cozad<br />
Robert & Carolyn Erickson<br />
Bob Hadfield<br />
Ed Hadfield<br />
Gloria Lamp<br />
Shirley McDonald<br />
Cathe McKee<br />
Darrel & Ester Michael<br />
Mable Oltmann<br />
Wand Quier<br />
Jack & Mike Roane<br />
Marjorie Shelly<br />
8<br />
James Pipan<br />
Irene Pipan<br />
Rodney Rathman<br />
Leland Bredthauer<br />
Ruby Harders<br />
Patricia Moss<br />
Jeff or Michelle Lane<br />
Betty Rogers<br />
Rex & Wilma Messersmith<br />
Kenneth Snyder<br />
Richard & Jacquelin<br />
Danielson<br />
Franklin & Lillian Jeppesen<br />
Don Schmitz<br />
Shirley Bailey<br />
K.A. & M.R. Baker<br />
Joseph Stroesser<br />
Richard & Diana Cupich<br />
P.A. Kauk<br />
Ortho Sport Therapy and<br />
Rehab<br />
Joseph Weiss<br />
Janie Augustine<br />
Bob & Jean Bartunek<br />
Francis & Linda Cavlovic<br />
William & Carol Clark<br />
Pamela Fletmeyer<br />
John & Debra Garner<br />
Cyd Hall<br />
Allen & Chris Hansen<br />
Barry & Joann King<br />
Brad Langenfeld<br />
Liz Neal<br />
Raymond & Kathleen<br />
Pentagulio<br />
Dwaine & Mary Pedler<br />
Kathryn Rybensky<br />
Eugene Witt<br />
Nancy Ethington<br />
Honorariums:<br />
Lola Anderson<br />
Dwight Anderson<br />
James Naumann<br />
Max & Karen Rudolph<br />
Keith Knudsen<br />
Leola Knudsen<br />
Clare Skattebo<br />
Maxine Skattebo<br />
Kate Domayer<br />
Ralph & Madonna Oglebay<br />
Christopher & Michelle<br />
Patrick<br />
Lisa Russell
G I F T S<br />
Donations:<br />
Ameritas<br />
Cindy Berry<br />
Elaine Carter<br />
Jennifer Dalbey<br />
Robert & Elaine DeFord<br />
Darelynn Egger<br />
Lila Egger<br />
Eustis Community Chest<br />
Eric Gehringer<br />
Raymond & Nellie Faye Hagberg<br />
David & Susan Hebda<br />
Lance & Debbie Herald<br />
Susan Hruby<br />
Richard Jensen<br />
Franklin & Lillian Jeppesen<br />
Richard & Maureen Kizer<br />
D.G. & Marie Kleinschmidt<br />
Ron & Carol Kopiasz<br />
Tim & Elizabeth Langan<br />
Stuart & Carol Leonard<br />
Charles & Kristin Lewis<br />
Gregory Loyd<br />
James Mallory<br />
William & Margaret March<br />
Sonya Maryott<br />
McCormick Charitable Trust<br />
John & Kay Monzingo<br />
Omaha Community Foundation<br />
W.E. & Alice Padgett<br />
James & Joanne Pennella<br />
Richard & Mary Ranallo<br />
John Rohacik<br />
Betty Schneider<br />
Daniel & Dorothy Sheppard<br />
Erik & Mary Jo Torring<br />
Union Pacific<br />
Wendell & Verna Wertz<br />
T<br />
hank you for your generous<br />
gifts and donations<br />
to the Nebraska<br />
Chapter <strong>of</strong> the American Parkinson<br />
Disease Association. All<br />
contributions are used in Nebraska<br />
for supportive services<br />
and across the country for<br />
Parkinson research.<br />
You can make a taxdeductible<br />
donation by sending<br />
a check to:<br />
Nebraska Chapter/APDA<br />
501 N. 87 Street, Suite 207<br />
Omaha, NE 68114<br />
Caregiver’s Gathering<br />
A group for caregivers<br />
was started a year ago<br />
in Omaha. It has grown<br />
from three people to up<br />
12 people. The group<br />
meets the first<br />
Wednesday <strong>of</strong> the<br />
month at 501 N. 87<br />
Street, Suite 207, which is the<br />
Nebraska Chapter <strong>of</strong>fice on<br />
the corner <strong>of</strong> 87th and Dodge.<br />
The meeting begins at 10am.<br />
Parking is provided in the rear<br />
<strong>of</strong> the building.<br />
Equipment for Sale<br />
A DynaVox model series DV 4<br />
computer is for sale. The DynaVox<br />
4 provides patients<br />
who have little or no speech<br />
with tools necessary to<br />
unleash the power to communicate<br />
with family members,<br />
friends and their own care<br />
team members. The DV 4<br />
computer has a small case.<br />
The cost <strong>of</strong> the computer is<br />
$3000. An external printer<br />
and phone can also be purchased<br />
for an additional cost.<br />
Please contact the I&R Center<br />
<strong>of</strong>fice at 866-626-7347 for<br />
more details.<br />
f.y.i<br />
FLU FACTS<br />
Think you have the flu. Know the FACTS.<br />
9<br />
New Exercise Class<br />
In Omaha, Jacey Gengenbach,<br />
NSCA, CPT, with Fitness<br />
Works, has begun exercise<br />
classes specifically<br />
designed for people with<br />
Parkinson’s. The classes<br />
cost $10.00 a session. The<br />
sessions are as follows:<br />
Monday 12pm - 1pm<br />
Tuesday 6pm - 7pm<br />
Saturday 9am - 10am<br />
The classes are held at Fitness<br />
Works, 1032 S. 74 Plaza<br />
in Omaha. For more details<br />
call Jacey at (402) 934-8881.<br />
New Group in Broken Bow<br />
A new support group has recently<br />
met in Broken Bow.<br />
Glenda Ward, facilitator, reports<br />
a great beginning for her<br />
group. A total <strong>of</strong> six people<br />
attended the dessert reception<br />
and planned to meet next<br />
month on December 8th for<br />
their first Christmas party.<br />
You are welcome to attend if<br />
you live in Broken Bow’s area.<br />
Call Glenda at (308) 870-3239<br />
for further information.<br />
Fever Aches Chills Tiredness Sudden symptoms<br />
Flu symptoms can be mild or severe — and if they’re mild can become<br />
severe without much notice. Be aware <strong>of</strong> your body and monitor<br />
your body temperature. When possible, get a flu shot. If you can’t,<br />
be sure you know your treatment and prevention options so you can<br />
be prepared.<br />
You don’t need to experience all <strong>of</strong> these symptoms to have the flu.<br />
If you have one or two, it's recommended that you see your doctor.
APDA<br />
Information and<br />
Referral Center<br />
601 North 30th Street<br />
Suite 2902B<br />
Omaha, NE 68131<br />
Phone: 866-626-PDIR<br />
(7347)<br />
Fax: 402-449-4278<br />
E-mail:<br />
labrovo@creighton.edu<br />
Dedicated to ease the<br />
burden and find the cure<br />
www.parkinsonsne.org<br />
APDA<br />
Nebraska Chapter<br />
501 N. 87th Street<br />
Suite 207<br />
Omaha, NE 68114<br />
(402) 392-APDA (2732)<br />
Nebraska@apda.omhcoxmail.com<br />
All memorials/donations are<br />
tax deductible. Checks should<br />
be made payable to the APDA<br />
and sent to this address.<br />
ADDRESS CORRECTION REQUESTED<br />
SAVE THE DATE!<br />
APRIL<br />
PARKINSON’S AWARENESS MONTH<br />
(Special Events will be posted on the website)<br />
May 31, 2009<br />
Walk-a-thon<br />
Miller’s Landing - Omaha<br />
June 27, 2009<br />
Golf Invitational Tournament<br />
Hand in Hand, Linking Lives for Parkinson’s<br />
April 2010<br />
10