Parkinson’s Disease Online Radio Talk Show Celebrates Its One-Year Anniversary

January 19, 2009, Chicago, USA: Last year in 2008, Rich and Kim Rozek had decided there was a need for an outlet that would help to increase the awareness needed for Young-Onset Parkinson’s Disease (YOPD) and all the people living with this disease. The Rozek’s connection to the disease was close and personal. Rich, age 48, had been diagnosed with Parkinson’s almost nine-years ago. He also stopped working in 2006, which made life a bit of a struggle.

Through these past years, Rich and Kim have experienced first-hand the emotional and financial roller coaster ride that comes with the disease. They survived the past few years by having patience and becoming quick learners, regarding doctors, prescriptions, being cash-strapped, and the more than occasional wrench thrown into their future plans.

The couple initially thought about raising money for research and awareness, like the numerous other PD foundations out there, but decided in the end to do what they do best…TALK!

Soon after this epiphany, “Parkinson’s Disease Talk Live” was born! The concept was to do a one-hour, weekly online radio talk program that featured PD news, advice, and the occasional guest, plus callers with questions about living with the disease. What it turned into was a reality show, with the couple opening their life and experiences online for all to listen to, and learn from.

Over the initial first year, their listeners have increased, and the download’s have been in the thousands! The couple discovered their gut instinct was correct - there is a real need for a program that discusses the many facets of Young-Onset Parkinson’s Disease.

Now in the second year of “PD Talk Live,” they decided to start a second unique program online for those with YOPD – an online support group called, “The PD Cyber Support Group.” “We thought this was really needed. When you have YOPD, you’re typically between the ages of 30 to 55 years, and usually not prepared for PD in this stage of your life! You might have responsibilities like a spouse, children, a job, and financially not prepared! You might not have a local support group to attend, and if you do – you might not have the time or energy to attend! That’s where we come in. We share our experiences, and give them someone to talk to. Plus our support is convenient – it’s as close as your computer,” said Rich.

PD Talk Live is on every Thursday at 11AM to 12PM (CST) on Blog Talk Radio. The PD Cyber Support Group meets online the first Tuesday of every month on Talk Shoe from 7PM to 9PM (CST). For more information, you can go to their website: www.PDTALKLIVE.com

Parkinson's Disease: A Complete Guide for Patients and Families

Author: William J Weiner

Recent innovations, including deep brain stimulation and new medications, have significantly improved the lives of people with Parkinson's disease. Nevertheless, medical, emotional, and physical challenges remain. The second edition of this accessible and comprehensive guide provides crucial information for managing this complex condition, including details on the use of medications, diet, exercise, complementary therapies, and surgery.

The second edition includes new information about:

• The genetic and hereditary pattern of the disease

• Medications and uses of established medications

• Other approaches to treating the symptoms of Parkinson's

• Juvenile-onset Parkinson's disease

• Normal pressure hydrocephalus

• The effects of fluctuating hormones on disease symptoms

• Fetal cell transplants and porcine cell transplants

• The nutritional supplement Co-Enzyme Q10

William C. Koller

There is a definite need for this timely book. It is one of the best I have seen for people with Parkinson's disease and for their families.

Publishers Weekly

As a result of actor Michael J. Fox's disclosure that he has Parkinson's disease, public discussion about both the symptoms and treatment of this illness has heightened. This attention is important, according to these authors, all specialists in the treatment of Parkinson's and other neurological disorders, because it is a progressive, chronic disease whose symptoms including trembling, uneasy gait and loss of dexterity mimic those of other diseases, which can often lead to misdiagnosis. One of the most frustrating aspects of Parkinson's is that it manifests itself differently in each of its victims, which makes coping with this disease particularly challenging. Nonetheless, what is most important, aver the authors, is that both Parkinson's patients and their families have access to the most up-to-date treatment including new drugs, surgery and other therapies (diet, speech therapy, acupuncture), and with compassionate, clear writing, they provide an excellent overview. Leaving no stone unturned, Weiner, Shulman and Lang also advise patients about less clinical but equally important matters such as dealing with health insurance companies and informing employers. Particularly useful for readers are the Q&A section and a comprehensive resource directory. Obtaining an accurate diagnosis is the first step, after which patients and their loved ones will find this practical guide the perfect complement to a physician's care. Illus. (May 19) Copyright 2001 Cahners Business Information.

Doody Review Services

Reviewer: Daniel B. Hier, MD (University of Illinois at Chicago College of Medicine)
Description: This is a compact well-written introduction to Parkinson's disease written for patients and their families.
Purpose: The authors have set out to provide patients with a useful guide to Parkinson's disease.
Audience: It is aimed at patient with Parkinson's disease and their families.
Features: Using a question and answer format, the authors have created a general market book that addresses many important issues related to Parkinson's disease including diagnosis, treatment, and disease complications.
Assessment: This is a useful book for patients with Parkinson's disease and their families. It is written in a clear fashion by experts in the field. Although technical terms are used, they are carefully defined and explained. The book is quite readable. Physicians taking care of Parkinson's disease patients can recommend this book to their patients with confidence.

Library Journal

Parkinson's disease affects over one million Americans and has recently has received notoriety thanks to actor Michael J. Fox's diagnosis. Weiner, director of Maryland Parkinson's Disease Center, presents known facts and clarification about this degenerative neurological disease. Physical, behavioral, and psychiatric signs and symptoms exhibited during mild, moderate, and advanced stages of the disease are examined, as are diseases that can mimic Parkinson's. The author emphasizes the questions patients should ask and the tests they should undergo before a diagnosis is made, and he outlines drug and surgical treatments, including alternative and complementary therapies. Somewhat clinical in tone, this title is more comprehensive than the American College of Physicians' Parkinson's Disease (DK, 2000), but it is not as effective as Caring for the Parkinson Patient, 2d ed., edited by J. Thomas Hutton and Raye Lynne Dippel (Prometheus, 1999), in providing information on daily coping skills and psychological adjustment to the disease. Still, the guide is excellent for its current medical and research information for the newly diagnosed. Janet M. Schneider, James A. Haley Veterans' Hosp., Tampa, FL Copyright 2001 Cahners Business Information.

Rating

3 Stars from Doody

EFGCP-AREC Workshop on Research Ethics Committee Complex Cases

The Older Participant

15 January 2009 - Basel, Switzerland

This is a joint event arranged by the EFGCP Geriatric Medicines Working Party and the UK Association of Research Ethics Committees, recognising that sponsors may sometimes find the workings and opinions of research ethics committees very difficult to accept, whilst the members of such committees themselves may well find applications and responses from sponsors and investigators equally difficult to manage.

This workshop will give an opportunity for these difficulties to be freely discussed by representatives of RECs, sponsors and investigators, focusing on the Older Participant and will hopefully lead to some conclusions as to how best these difficulties should be addressed or even avoided.

For further information: www.efgcp.be or contact the EFGCP Secretariat (tel: +32.2.732 87 83 – conferences@efgcp.be ).

Art Without Boundaries Making a Difference

Through the simple acts of singing, movement , painting and storytelling, Dayle Sundberg of Estelline is helping individuals with brain disorders bring everyday, pleasurable moments into their life.

Sundberg has started the first South Dakota chapter of Art Without Boundaries after completing an extensive online course and doing her hands on training with founder and mentor Noell Hammer. This is the first chapter in South Dakota, but there are chapters in six other states.

Art Without Boundaries uses MnemeTherapy, a cutting-edge whole brain therapy for individuals with brain disorders or issues. "This is not art therapy," said Hammer, "but rather a way to speak to the brain in a different way."

Hammer and Sundberg visited the Golden Living Center in Lake Norden and the Estelline Nursing and Care Center earlier this month, spending 30 minutes with willing residents. The session started out with the singing of a familiar song, left-to-right body movement, the painting of a picture and ended with storytelling about the painting .

"I had no idea how it would affect my heart," Sundberg said of her experience with her first two patients. As she worked with a stroke patient who had difficulty speaking, by the end of the 30- minute session the patient was getting some vowels and sounds out and was able to say "I love you."

"Everyone was weeping for joy with the hope it gave," said Sundberg. "I didn't' realize how big of an impact it was going to be."

Hammer stresses that is not the artwork, but the process which strives to stimulate sustained attentive focus.

"Our goal is to provide a rewarding experience . We are not trying to cure the patients, but provide every day pleasure," Hammer said.

But during the process many of her clients over the past 10 years, ranging in age from 2-107 , have had incredible results, including amazing paintings, significant improvement in verbal skills, mobility, combativeness, spatial acuity and understanding instructions.

"The therapy is something I would have wanted to do with my mom but couldn't ," Sundberg said of her mom, who spent the last five years of her life with injury-related dementia. "It would have been wonderful to get a glimpse of her again."

Having a parent with a brain injury was one of the reasons Sundberg chose to complete the training and open an Art Without Boundaries chapter in South Dakota.

"It was a good fit for me as I love old people and have had experience working with dementia patients," Sundberg said.

Sundberg has a Bachelor of Fine Arts from the University of South Dakota with a specialization in sculpture and also saw this as a natural progression for her art.

MnemeTherapy works on individuals with all types of dementia: Alzheimer's disease, Huntington's disease, Parkinson's disease, stroke victims, Pick's disease, (frontotemporal dementia), Lewy Body disease, and with younger children and adults with Asperger syndrome, pervasive developmental disorder, ADD, ADHD, autism, and cerebral palsy.

Caregiving institutions such a nursing homes and assisted living center, as well as private individuals with short-term rehab or disorders, are encouraged to make an appointment with Sundberg by calling her at 605-873-3030 or 605-769-0811 .

For more information about MnemeTherapy and Art Without Boundaries, visit http:// www.artwithoutboundaries.org or www.artwithoutboundaries.org/DS.html.

Surprise for charity champion

A SURPRISE party was thrown for a gym boss who spreads festive cheer all year round — by raising cash for charities.

Charity champion Ann Woods of Bolton Town Centre-based Motorcise has ended the year raising £6,600 for a number of needy organisations.

And that comes on top of running a gym that specifically caters for women with serious medical conditions, from Parkinson’s Disease to Multiple Sclerosis and arthritis.

Two months ago Mrs Woods, aged 56, bought the gym to ensure specialised facilities remained for her members.

But the gym also helps her to ensure lots of money is raised for worthy groups by acting as the venue for fundraisers, while staff and members frequently take part in raffles and other events.

Mrs Woods said: “I’ve seen first hand through my members the important work charities do in funding research into medical conditions and supporting those people.

“These charities get no funding and depend solely on donations.

“This is why we started fundraising a few years ago.”

Fundraisers have included a Christmas Variety Show, theme nights, sponsored swim and raffles.

“Anything worth celebrating, such as Easter, the birthday of the gym, or Christmas all become fundraisers.

“Sometimes having a medical condition or caring for someone who has can be isolating and having events can be important social events. We even play bingo in the gym,” said Mrs Woods.

She added: “It was brilliant being surprised like that, but this money could not be raised without the help of my team and the members who always show their support.”

Personal trainer Heather Taylor, aged 50, from Belmont, described Mrs Woods as a “star”.

She said: “Ann bought the gym a couple of months ago to stop it from going under because she was so concerned about her members.

“We couldn’t do without her. She organises something every week. She will do anything to help anybody.”