Important Message for all those Afflicted with Parkinson's -

Join the "Cure Parkinson's disease Now" initiative!

By Leon Rosenthal

The Experimental Therapeutics Branch (ETB) at the National Institute of Neurological Disorders and Stroke has launched a "Cure Parkinson's Disease Now" initiative.

Doctor Thomas Chase, Chief of the ETB, indicated a new sense of urgency and a dedicated determination to find the elusive cure for Parkinson's disease. Toward that end the Agency currently has 25 experiments in various stages of development. The following are among the most promising:

Talampanel-developed by Ivax. Originally developed for Epilepsy but seemingly possess neuroprotective qualities, particularly in combination with Amantadine.

      Lead Researcher  Francesco Bibbiani, MD.               Phone 301-496-7996.

ACP-103, a 5HT2-A antagonist used in the treatment of levodopa-induced motor complications.

      Lead Researcher  William Bara-Jimenez, MD.             Phone 301-496-4604.

Lisuride patch, developed for levodopa-induced motor complications, seemingly will reduce or eliminate dyskinesias. Also Keppra-developed by UCB Pharma.

      Lead Researcher  Tzvetelina Dimitrova, MD.               Phone 301-451-2067.

Nicotinic acetylcholine receptors: The loss of cholinergic neurons and its relationship to Parkinson's is being evaluated.

      Lead Researcher  Masahiro Fujita, MD, PhD.       Phone 301-451-8898.

Due to the limited market for Parkinson's related medication, most pharmaceutical companies are loath to invest in expensive, time-consuming research and trials. However, the NIH has decided to take a stand and to move aggressively in the investigation of any and all promising drugs, particularly those shunned by pharmaceutical manufacturers as being too risky.

If you are interested in volunteering for a trial of one of the above, you may wish to speak directly to the researcher listed. Or, better still, contact Mae Brooks at 800-362-3479, for information concerning the complete range of trials and qualifications.

ADDENDA

Several years ago, I volunteered for a trial of an experimental medication for Parkinson's, conducted by the NIH. As a result I'm able to speak about the manner in which volunteers are treated at the NIH from personal experience. Further, over the years I've become friendly with Dr. Thomas Chase, who heads the Experimental Therapeutics Branch of the Institute of Neurological Disorders at the NIH. I spent a day with Dr. Chase recently, during which he told me that there were currently 25 new drugs and/or treatments in various stages of development at the NIH, as follows:

      5 new drugs on which trials are in process

      4 medications under analysis (manuscripts being written)

      5 now in pilot studies

      11 studies in the approval process

• The NIH offers free shuttle service to and from the three major airports serving the greater Baltimore-Washington area.

• One is given the choice of staying in the hospital on the NIH premises or being housed in a nearby motel at the NIH's expense.

• The NIH will pay round-trip airfare from anywhere in the lower 48 states.

Volunteers are treated with courtesy and efficiency by a well-trained staff.

The excellent brochure on volunteering put out by the National Parkinson Foundation suggests quests you may want to ask before volunteering.

Leon Rosenthal is the leader of the Magnolia-Peninsula support group in California. Prior to moving the group to the new location in San Mateo, Leon and his wife Edith ran the group meetings in their home in Hillsborough, California,  for 7 years. We appreciate that he always shares valuable research information with us. Thanks so much, Leon!

PPSG publishes 4 quarterly and 8 support group newsletters on a yearly basis. If you would also like to receive local support group newsletters, so you can learn more about what others are doing at their group meetings, please call write to PPSG, e-mail to: ppsginfo@yahoo.com, or call 408-734-1593. Thank you.

This newsletter was assembled by the Morgan Center in Santa Clara, California.

The Unity Walk  a Walk of Love

By Linda Chen

I have just returned from one of the best times I've had for a very long time, because Donna Kos organized the Unity Walk, in honor of her father, on May 15.

This short, 1.2 mile walk on the sidewalk around Target/Macy's Sunnyvale Mall, was just perfect for our small group, that included young people; and although it was a short walk, it had a great purpose. All funds were sent to the Parkinson's Unity Walk in New York and will be distributed for Parkinson's research.

My brother and our children walked not only to raise money for reserarch but to express our love for our parents and our grandparents. Our father and our grandfather both have Parkinson's disease. Sometimes it feels as though we were unable to help them, being such a distance away, but we could walk together.

This event was an expression of love by those who are not directly affected by Parkinson's but still gave donations through sponsorship or products, and those who are and gave so that a cure may be found so that non will suffer. I was surprised to find the Army reserve was there to support us  they were most kind.

Whole Foods grocery store greeted us with a beautiful table of fresh fruits, veggies, and juice drinks. I started my walk with a large cup of provided Starbuck's coffee. What a great way to spend a California spring morning!

Donna had 18 corporate sponsors who donated enough money to have their logo's put on the sponsor T-shirts. We proudly wore them on the walk and they are a happy reminder of the day. The raffle prizes were great, with gift certificates for restaurants, books and book give-aways. Fun was had by everyone attending and it felt meaningful.

Thank you, Donna, for giving all of us the opportunity to express our love for each other through the Unity Walk of Sunnyvale, California. See you next year!

Linda Chen is the leader of the Palo Alto support group in California. Recently, Linda also started a caregivers group in the same area. Thanks, Linda.

The Story of Parky

By Jim Wetherell, a Parkinson's survivor

My name is Jim Wetherell, but to most who know me call me "Parky." This is because of my email address is: parky@inevergiveup.org

My story is very typical, up to a point. I was diagnosed with PD in Nov.'95. My doctor told me to expect a cure in 5 years, and that my medication would last for 6 years. I spent the next 2 « years in a fear state, worried about which would get to me first. This put me into such a pit of depression, that my now x-wife, out of sheer frustration, asked me to leave. To shorten a longer story, she was right; it was the best thing that she could have done for me. Although at the time, it didn't seem that way.

I tried staying in the same area, but soon learned that the area was too expensive to afford me on what I would draw from state disability. So, for my first major decision, I decided that my only option was to move in with my Mother, in Hemet. This was another slash to my declining dignity. Living with Mom at the age of 55 was not a real ego builder. But I look back now and see that I was lucky that she was there for me. So, in March of 1998 I moved to Hemet, CA.

I have always had a love for cycling, ever since my Dad bought me my first bike, a Hiawatha. I have been a serious cyclist since 1980 when I started commuting to work on a bicycle. I remember when I bought my Schwinn Traveler with a hugee 27" frame. The dealer told me to bring it back in 30 days for a tune-up. So, after 30 days I went back, with 455 miles on the odometer.

In 1997 I was finding it very painful to ride my bicycle. It got to where I didn't look forward to riding. After trying many seat/handlebar combinations, I went "extreme" and bought a recumbent bicycle. This had to be the answer, but it wasn't. I never could get it comfortably balanced. In the year that I had it, I rode only 225 miles. Then, in June of '98, I learned why I had fallen off my recumbent (more than once!). At a doctor's appointment that was to qualify me for SSI, I discussed my problems with balancing my bicycle. I thought it was the radical design of the recumbent bike, but he said that it was from my PD, and recommended that I find another form of exercise (not cycling). That was where I said "ENOUGH"! I had been diagnosed with a disease that was going to turn my world upside-down. I had been diagnosed with a disease that had taken my career from me, and had forced me into an early retirement. I had been diagnosed with a disease that had taken my marriage. All I had left was my cycling, and now they wanted that!! Luckily, just before the doctor's appointment, I had been invited to a recumbent rally where I saw a number of trikes. Yes, 3 wheeled bicycles, that don't need to be balanced.

Another side of my PD is an anxiety disorder, and from past knowledge I knew that I must have some way to burn off some of these emotions. Little did I know that cycling would do much more. Even on my "off days", when my mobility is limited I can get on my trike and ride. This ability brings joy to me, and fun into my life.

I decided to take a gamble. I emptied my bank account, and took my recumbent bike to where I saw the trikes, and I literally, spent everything I had to buy a trike. This was by far, the smartest decision I've ever made.

When I moved to Hemet, some 2  years after my diagnoses, I was taking 750 mg of Sinemet per day, and I had a tremor in my right hand that would not allow me to drink coffee with my right hand. I can very proudly tell you that from July 1998 to July 2002, I rode 28,000 miles, and to date I have ridden more than 32,000 miles. Best part? : I now take 300 mg of Sinemet, daily, and as long as I stay out of stressful situations, my tremor is gone! I have worked very hard to get to where I am now. I went to Riverside every Thursday for 2 years, to a group therapy session for depression, which was a 74 miles round-trip. I would leave home at 5:30 AM, and arrive about 8:45 for a 9:30 group meeting. This gave me time for coffee and a well-deserved donut. Out at 11:30, and depending how hot the weather, home by 3:00/4:00 PM.

I have been very fortunate in that when I have had a need, I have found a way to fulfill that need through my friends, or through equipment donations from companies that believe in my goals. It is time now for me to share what I can with others who are less fortunate. My plan is to work through support groups to make available recumbent trikes to those who have a sincere desire to challenge their disability, but who can't afford the $1000/$3000.price tag to get one. With assistance from a very special man, Charles Penninger of Penninger Recumbents, who has backed me in my work with Parkinson's, I have been able to set up a website www.inevergiveup.org that shares a message of hope to many.

The best part of our association is that it has and is helping others. But also important is that Charles and I have become close friends.

Some Current Support Group Activities

Magnolia  Peninsula

July        No meeting.

August 12      Dr. Marcia Raggio, Licensed Audiologist, will discuss hearing loss in the aging process and how to combat it.

September 9      Dr. Robert Telfer, well-known Peninsula neurologist, will update us on the latest in treatments and medications.

October 14      Tracy Stewart, clinical nurse at the Parkinson's Institute, will talk about current trials, etc., at the Institute.

November 11      Dr. Michael Aminoff, professor of Neurology at UCSF, will answer questions about medicinal choices and dosages.

December 9      Awaiting speaker acceptance.

The Magnolia-Peninsula Parkinson's Support Group usually meets on the 2nd Thursday of each month, at 1:30 PM, in the West conference room at The Magnolia of Millbrae apartment complex, located at 201 Chadbourne Avenue, corner of Magnolia, Millbrae.

Special thank you to the Magnolia staff for their generosity in providing refreshments for our meetings. For more information please call Leon Rosenthal at 650-348-3480.

Oakland

July  No meeting.

August 1st  The presenter is Wheatly Allen, a member of the Oakland support group, is a sculptor to emperors, presidents and kings.

The Oakland Support Group meets on the 1st Thursday of the month, from 1:30 to 3:30 PM at the Easter Seals Bay Area, 180 Grand Avenue, Suite 300, Oakland.  For further information, please call Robert Lemon, at 510-526-2078.

Redwood City

June 18  Ann Wilkinson, a psychologist and a registered nurse, will be speaking to our group. Ann combines the healing arts with the communication skill to help the patients and the caregivers.

July 16  Shelley from Metamorphosis Mobile Massage is our featured speaker. Shelley is a certified massage therapist who provides therapeutic massages in your home.

PPAP-Positive People Against Parkinson's-meets on the 3rd Friday of each month, from 12:30 to 2:00 PM, at Sequoia Health & Wellness Center, 702 Marshall Street, Redwood City. Parking available in the rear. For more information, call the Sequoia Center at 650-367-5998.

San Jose  Willow Glen

June 4  Bob Dens spoke on "The Mature Driver." Bob is an instructor for AARP's 55 Alive program.

July  No meeting.

San Jose Caregivers

In May, Le Sotir hosted a delicious luncheon at her lovely home for our meeting. 12 members attended this fun event. The impressive menu consisted of mango chicken spring rolls with mint, Greek salad, prawns fettuccine, seasonal fruits, and chocolate muse cake. Le has many talents and cooking is only one of them.  Thanks, Le!

The San Jose Caregivers Support Group usually meets on the 4th Wednesday of the month, from 1:30- 3:30 PM at St. Francis Episcopal Church, 1205 Pine Avenue, San Jose. Please come to the meetings, we can learn from one another!

For information, please call Dr. Linda Filice at 408-978-2859, or Dr. Charmaine Eng at 408-723-8116.

Tulare-Kings (formerly Visalia)

June 4  Video on "DBS procedures", and information sharing time. Light lunch is served; donations appreciated, but not required.

July  No meeting.

August 6  Carolyn Loverin from Life Style Center will talk about "Flexibility and Exercise."  Light lunch served; donations appreciated, but not required.

The Tulare-Kings group meets on the 1st Friday of the month, at 10:00 AM, at Visalia United Methodist Church, 5200 W. Caldwell Avenue, Visalia, CA 93277.

For more information, please contact Mary Dickerson (new leader), at 559-622-9044 or the church office at 559-627-1660.

Parkinson's Drug Linked to Heart Valve Disease; Permax May Damage

Heart Valves

By Jennifer Warner

WebMD Medical News

April 28, 2004  A drug commonly used to treat the early stages of Parkinson's disease may damage the heart and increase the risk of heart valve disease, according to new research.

The study showed that 89% of Parkinson's disease patients treated with the drug Permax had leaky heart valves, called valvular insufficiency, a form of heart valve disease that occurs when the heart valves don't close properly. The condition forces the heart to work harder to meet the body's blood circulation needs and could lead to serious complications, such as heart attack or heart failure.

Researchers say cases of heart valve disease have previously been reported anecdotally among Parkinson's patients treated with Permax.

Permax is a member of a class of drugs known as dopamine agonists and stimulates nerves in the brain that would normally be stimulated by dopamine. People with Parkinson's disease suffer from a shortage of this brain chemical.

The results of the study were presented today at the American Academy of Neurology 56th Annual Meeting in San Francisco, Calif.

Permax Linked to Heart Valve Disease

To determine whether these anecdotal reports represented isolated incidents or a common side effect of Permax that had gone unnoticed, researchers sent letters to 200 people with Parkinson's disease who were known to be taking Permax.

Those who wished to continue taking the drug were urged to have a heart ultrasound, called an echocardiogram, to detect any heart valve problems.

Echocardiograms were performed on 46 Parkinson's patients, and researchers compared the results to an age-matched healthy comparison group.

The study showed that 89% of the patients treated with Permax had evidence of leaky valves, and patients taking the drug were up to 18 times more likely to have significant leakage in at least one of their heart valves compared with "Our study demonstrates that [Permax] may injure cavalves and, since they are available, consideration should be given to switching patients to an alternate dopamine agonist," says researcher Richard B. Dewey Jr., MD, associate professor of neurology at the University of Texas Southwestern Medical Center in Dallas, in a news release.

Symptoms of heart valve disease include:

• Shortness of breath and/or difficulty breathing

• Weakness or dizziness

• Chest pain or pressure

• Heart palpitations

• Swelling of ankles, feet, or abdomen

• Rapid weight gain

People with Parkinson's disease using Permax or experiencing these symptoms should discuss the issue with their doctor.

SOURCES: American Academy of Neurology 56th Annual Meeting, San Francisco, April 24 - May 1, 2004. News release, American Academy of Neurology. WebMD Medical Reference provided in collaboration with The Cleveland Clinic: "Heart Valve Disease." WebMD Medical Reference from Healthwise: "Dopamine agonists for Parkinson's disease."

This article was forwarded by Jim McKarns of San Mateo, California. Jim regularly attends local support groups and shares research information. Thanks, Jim.

The DEADLINE for the the fall quarterly newsletter is Friday, September, 2004.

Q. I've heard there is a service that enables older people to find out if they qualify for benefits they may not even know about. Is this true?

Yes, there is an online service called BenefitsCheckUp, at www.benefitscheckup.org, that identifies benefits open to people 55 and older. Its website covers more than 1,150 public and private programs that help with health care, utility costs and other essential needs.

Visitors to the site can fill out a confidential questionnaire and get a personalized report listing programs for which they may qualify. The report also tells how to apply for these programs.

BenefitsCheckUp, a service of the National Council on the Aging, does not determine anyone's eligibility for benefits. Applicants must deal directly with sponsoring groups to find out if they qualify.

Walt Duka

Adapted from AARP Bulletin, June 2004.

New Guide Focuses on Nuts and bolts of Good Health

The packet Guide to Staying Healthy at 50+, a comprehensive booklet with tips on good health habits, screening tests and immunizations for older Americans, is available now from AARP.

The free guide, developed with the federal Agency for Healthcare Research and Quality and available in English and Spanish, incorporates the latest government research about which tests to get and when. It also provides easy-to-use charts to keep track of personal health information, key questions to ask doctors and resources for more information on everything from cancer and diabetes to nutrition.

To obtain a copy, call AARP at 888-687-2277 and ask for publication fulfillment number D18010 for the English guide to D18024 for the Spanish guide.

Read the English guide online at www.ahrq.gov/ppip/50plus and the Spanish guide at www.ahrq.gov/ppip/50plussp

Medicare Discount Drug Cards Program

Millions of older Americans are calling the Meidcare hot-line or visiting its website to find out details of the new Medicare discount cards, amid a chorus of criticism over the complexity of the program.

The volume of inquiries  10 times the normal level, according to Medicare officials  suggests strong interest in the cards as a way to reduce drug costs before the full Medicare drug benefit begins in 2006.

But with more than 70 cards available, each offering different discounts for different drugs, many people say that figuring out which one to choose is a deeply intricate maze.

The most valuable part of the program is the $600-a-year credit that eligible people with limited incomes can have applied to their card t spend on drugs.

For more information about this program:

Go to the Medicare website at www.medicare.gov. You can compare prices offered by each card in your area at local pharmacies or by mail order, and see if you're eligible for the $600-a-year low-income credit or help from state assistance.

Call the Medicare hotline at 800-633-4227 or TTY 877-486-2408 for the same information a printout of the details will be mailed to you.

Be ready to give the names and dosages of the drugs you are taking.

Go to the AARP Bulletin website at www.aarp.org/bulletin for a step-by-step guide on navigating the Medicare website and for questions and answers about the program.

For a monthly forum on questions about Parkinson's disease, available on the second Monday of the month, between 2 PM and 3 PM Pacific time, go to www.nwpf.org/forum/frm_topic_list.asp, or www.nwpf.org/, under "Ask the Doc."

The above information was forwarded by Linda Chen, the leader of the Palo Alto support group, in California.

Power3 Announces Research Agreement with Baylor College for Neurodegenerative Disease Blood Test;

Protein Diagnostic Test Shows Effectiveness

June 4, 2004Power3 Medical Products, Inc. (OTCBB: PWRM) announces today encouraging initial results from their recently formed research agreement with Baylor College of Medicine to search for biomarkers that directly impact the diagnosis of neurodegenerative diseases. The Company in collaboration with Stan Appel, M.D., Chairman of the Department of Neurology at Baylor College of Medicine, has completed the first phase of clinical validation, testing serum proteins from 79 patients, normal and neurodegenerative disease controls, including patients with Lou Gehrig's (ALS), Alzheimer's, and Parkinson's diseases. Power3, in collaboration with Dr. Appel and his team at Baylor, have applied the latest proteomic techniques to the differential diagnosis of neurodegenerative diseases utilizing blood serum. Dr. Stan Appel, a recognized global leader in neuromuscular and neurodegenerative disease research, has been working in concert with Power3 and Dr. Ira L. Goldknopf, Chief Scientific Officer to further validate these biomarkers. According to Dr. Ira Goldknopf, "With this test, which involves monitoring the concentration of 9 proteins in the blood, we are able to identify unique biomarkers whose profiles appear to distinguish patients with Lou Gehrig's (ALS), Alzheimer's, and Parkinson's diseases from each other as well as from normal patients and patients with other motor neuron and neurological disorders. To our gratification, the specificity and sensitivity of this test exceeded our expectations." Dr. Stan Appel, commented, "These 9 proteins identified by Power3 represent promising biomarkers for ALS, Alzheimer's and Parkinson's diseases. A main problem to date is that there is a lack of biomarkers for early diagnosis, prognosis, and guidelines for therapy for neurodegenerative diseases. We are pleased with the progress that has been made, and feel these biomarkers have great promise to improve the clinical outcomes of our patients." The Company is proceeding with a confirmatory second phase involving serum from an additional 104 individuals with results expected shortly.

SOURCE: Business Wire (press release), CA http://tinyurl.com/2uw29 . This information was forwarded by Murray Charters of Canada. Thanks, Murray.

In Honor Donations have been received in honor of Anthony J. Mendoza, and Winnie McGannon.

In Memory Donations have been received in memory of Will Barmore, Jim Bouttte, Keith Brown, Josephine Faraone, Albert F. Faraone, Albert F. Hoerler, Alice Hyman, Art Kezer, Rozene Kretz, Dave Larentson, John McGannon, Alice Ann Roberts, Benjamin Rudin, and Jerry Swezea.

Thank you so much for your donations!

Your generous contributions have enabled us to continue serving you, as well as others. Please use return address labels, to help us acknowledge your donations properly. We would also like to thank our readers who contribute regularly to help us in printing and postage costs. Your help is greatly appreciated!

PPSG Board Meetings

We welcome anyone to drop by our Board meetings and share ideas with us! We regularly meet on the third Wednesday of the month between 1:30 and 3:30 PM at the Parkinson's Institute in Sunnyvale. To confirm meeting date and time, please call the PPSG office, at 408-734-1593.

MAILING LIST

If you would like to be removed from our mailing list or know someone who would like to be included, please take a minute,  call us at 408-734-1593, and let us know.

If you are receiving duplicate mailings, please write to PPSG, or call us at 408-734-1593. Thank you!

If you have any items for sale or donation, such as exercise equipment, wheelchairs, etc., please write to PPSG, call us at 408-734-1593, or e-mail PPSGinfo@yahoo.com.

Disclaimer

This document is published to promote a greater awareness of the problems caused by Parkinson's disease. Neither the Peninsula Parkinson's Support Groups, Inc., its members and employees, nor the individuals involved in its production make any warranty, express or implied, assume any liability or responsibility for accuracy, completeness, or usefulness of any information or represent that it will not infringe privately owned rights. Mention of any product, material, or service shall not, nor it is intended to, imply approval, disapproval, or fitness for any particular use.

If you have any items for sale or donation, such as exercise equipment, wheelchairs, etc., please write to PPSG, call us at 408-734-1593, or e-mail ppsginfo@yahoo.com.