THE ROCKY MOUNTAIN WHITTLER
Meeting starts at 10:00 AM. Please try to be there at 9:45 to sign in, look over publications and say hello to other members. Pot luck luncheon follows, with Charlie's BBQ as the main dish. Please bring a side dish or dessert. If you cannot bring a dish, come anyway and enjoy the fellowship.
Saturday, July 5th and August 2nd: Don't forget to come to our picnics this summer, which we will have in lieu of our regular meetings. Look for details and locations on the enclosed flyer. Main dish (KFC in July and sloppy joes in August) and soda and water will be provided. As at our regular meetings, please bring a side dish to share. Bring a chair if you have one.
October 4th meeting: Dr. Brian Grabert will be there for his annual visit. More information to follow.
Again this year the Colorado Springs Senior Center Director Mendy Putman provided us free use of the facility which allowed ample room for our 2 main presentations and added demonstrations. My sincere thanks to Corrie Frisco, our Senior Center hostess, who opened the facility very early and helped us every step of the way throughout the day-she's truly a wonderful hostess and friend.
To all those volunteers who helped with our Symposium this year - you deserve a BIG thank you - it was certainly another super “team effort”!
The next BIG thank you needs to go out to our sponsors and contributors:
… Namely:
…Namely:
Again, I personally want to THANK everyone involved, our speakers, all those who attended, and our sponsors/contributors. We're really looking forward to the “Mighty Fine” 2009 Parkinson's Symposium!
(Editor's Note: And a BIG THANK YOU to Mary and Phil for organizing this important event!)
Answers from Dr. Marks
Question 4: I was glad to hear you talk about protein diets as the National P.D. Foundation is pushing a high carb diet. I have been on the "Zone Diet" by Dr. Sears and have lost a lot of weight and my energy level has increased dramatically. I sleep well and I don't get sick, so I will stay on it. Your comments?
GARAGE SALE WRAPUP
ADDITIONAL SUPPORT GROUPS
Some useful information always appears at our meetings. For example, one member has a “little red book” in which she keeps a record of medications and doctors' visits. She also notes questions to be asked during those visits. Traveling overseas? Take with you handwritten prescriptions that prove these are authentic. To reduce the risk of the patient's choking, be sure that meat and fish are cut small. We all know that Parkinson patients often have extremely small handwriting. Try using a fine-point marker which may by itself make writing larger. Spectrum Fitness (810 Arcturus Dr., 80906), behind great Moves, is offering Tai Chi classes. Tai Chi is a slow-moving, gentle exercise that benefits balance among other good things. Call them at 444-0381.
Young Onset Group: Meets the third Saturday of each month at 10 AM at Winslow Court, 3920 East San Miguel (just east of Academy Blvd.) Next Meeting: Saturday, June 21st. The group is for all people who were diagnosed with PD at a young age, even those early-diagnosed people who are now older. Call Allen Killebrew (540-6360) with any questions.
The workshop is being organized by the Colorado Neurological Institute of Englewood. If you are interested, please call Kim Martin (a nurse at CNI and National Parkinson's foundation patient care coordinator) at 720-974-4093. Her email is
KMartin@thecni.org
Spheramine is made from cells called human retinal pigment epithelial cells (hRPE) that are found naturally in the human eye. By combining these cells with microscopic gelatin beads called microcarrier support matrix (MSM), the Emory researchers were able to produce Spheramine, a targeted therapy for Parkinson's. Spheramine can be implanted in the brain, where the eye cells naturally begin to produce levodopa. The researchers believe the levodopa is then turned into dopamine, a neurotransmitter lacking in people with Parkinson's.
""Spheramine is not stem cells. There's no requirement for immunosuppression, and these cells are easily harvested from eye banks and are readily available,"" Bakay said.
The new study included six patients with moderate to severe Parkinson's disease, a progressive brain disorder that causes tremors and other motor difficulties that worsen as the disease advances. Parkinson's affects as many 1.5 million Americans, according to background information in the study.
There are few effective treatments for Parkinson's, and those that do work often have unpleasant side effects and may stop working over time. Patients selected for the study were chosen based on their responsiveness to levodopa and the severity of their symptoms when they were off their medication. Using MRI-guided stereotactic surgery, the researchers implanted Spheramine into areas of the volunteers' brains that appeared to be most affected by Parkinson's.
Dr. Bruce Silverman, a neurologist at Providence Hospital and Medical Center in Southfield, Mich., said the new study ""showed that there was clinical improvement over a sustained period of time. The study was based on small numbers, but it shows some promise."" He added that the study needs to replicated with a larger group of patients.
Bakay said the researchers have recently completed a larger, double-blind study, and results of that trial should be available by the end of this year or early 2009.
STAY ACTIVE!!
The Jeanne Taylor Parkinson's Support Group (part of CPF) meets the first Saturday of each month at 10 AM monthly (except January & July, other exceptions to be noted in The Whittler) at Otis Park Community Center 731 N. Iowa St (at Dale St). Meetings followed by potluck lunch. Other useful websites: PAR (Parkinson Assn. of the Rockies)
June 20, 2007
NEXT MEETING:
Saturday, June 7, 2008
Otis Park Community Center
731 N. Iowa (at Dale)
PROGRAMS
Diana Begin
June 7th and September 6th Meetings: Breakout Sessions. Members will break out into two groups: one for people with Parkinson's and one for their caregivers. This is a good chance to ask other people how they handle certain issues (such as freezing, medications, caregiver resources, etc.). This is a very popular activity for most attendees.
2008 Symposium: The “Wrap Up” Report
Mary and Phil Kellerhals
2008 was just great for our annual Parkinson's Symposium! We had a beautiful day and a record turnout! Over 115 people attended-thank you to those that RSVP'd…it really made planning and preparing so much easier. And our surveys, which half the attendees filled out, told us this Symposium was a huge hit. Thank you so very much to all of you who took the time to complete a survey!
… Namely:
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Set Up team: Gary Street, Donna Deis, & Erna Wilcox, & Kirsten and Kyle Bunecke - 20 tables, 120 seats, table decorations, refreshment tables and much, much more
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Techno Guru: Frank Deis - Flawless “sight, sound & recording” for the Symposium Day and all the prep prior to that Saturday
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Check-In team: Julie Pfarrer and Christel Wagoner - they got tremendous kudos for a smooth and fast check-in system
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Photographer: Hector Foutz - captured the whole event fabulously
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Nametag team: Carla Holland & Erna Wilcox - had us all covered
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JTPSG Literature hostesses: Elfriede Smith & Catherine Reed - they really knew their stuff
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Host for Todd Bischoff: Allen Killebrew - kept Todd right on schedule
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Brunch hostesses: Silvia Schmidt & Donna Deis - kept us all movin' along
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Flowers: Silvia Schmidt & Christel Wagoner - provided us with 'a touch of class'
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Media coverage: Gary Street & Jill Reid - thanks for getting the word out about our event
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JUNE 2008/PAGE TWO
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Speaker intros: Ric Pfarrer for Dr. Marks & Jill Reid for Todd Bischoff - wonderful words
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My Assistant this year: Christel Wagoner who will be the 2009 Symposium Chair!
Boy, it takes a lot of dedicated people to make this event happen. I'm so thankful for all of you!
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Medtronic: for an extremely generous grant to support our efforts and for Ms. Jenna Moore who provided us with wonderful insight to Medtronic's services/technologies and escorted Dr. Marks from Denver.
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Interim Healthcare: for a very generous grant to support our Symposium and for Ms. Charlene McGlasson, Ms. Lucy Crandall, and Ms. Tanisha Moore who stayed with us and presented all the services Interim has to offer.
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Spectrum Wellness: for generously providing Ms. Andrea Riley and her very applicable information of Spectrum's services and 1-week passes to try those services out (more available at the Jun 08 meeting); Ms. Keri Campbell for her Yoga demonstration & Mr. Martin Kelly for his demonstration and description of Tai Chi.
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Great Moves Physical Therapy: Karen Stellick for her generous grant which provided us with lovely table décor.
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Like No Other, Etc., Inc. Bakery: Owner Nancy Johnson provided more than 14 dozen, scrumptious treats for our enjoyment.
And finally a BIG thank you to our 2 speakers:
We sincerely thank Dr. William J. Marks, Jr., and Mr. Todd Bischoff for both coming from California to be with us as our keynote speakers. They received rave reviews on our surveys and their messages filled us with hope and strength!
Ø
Dr. Marks addressed Gene Therapy and its status, development and applicability to Parkinson's Disease.
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Todd Bischoff is a Young-Onset Parkinsonian and walked us through his experience and inspired us with many insights to deal with our most challenging adversities.
We were fortunate to have Frank Deis videotape both presentations and Donna Deis graciously volunteered to reproduce them on DVDs. So, DVDs of each presentation will be available, in limited supplies, at the 7 Jun 08 JTPSG meeting at Otis Park. Cost: $1 per DVD. $2 for a set.
At the 7 Jun 08 JTPSG meeting I'll also share the Survey results for your information and awareness.
Mary Kellerhals
2008 Symposium Chair
At our Symposium this year, Dr. William J. Marks agreed to answer any questions we had on his Gene Therapy presentation. We received 4 questions and Dr. Marks answered them just before he departed for Shanghai, China.
Question 1: Does Dr. Marks have a website or Blog where we can stay abreast of what's happening and current and how we can be part of Phase 3?
Ans: No, I don't have a blog. I suggest checking http://www.pdtrials.org/
&
http://clinicaltrials.gov/ regularly to keep updated on various clinical trials. If and when a Phase 3 CERE-120 trial takes place, it would be registered on those sites.
Question 2: What about the use of Omega-3 and using a low inflammation diet to help P.D.?
Ans: I don't know of any information about the dietary question.
Question 3: I noticed your test subjects are between the ages of 35-73. What about patients that were not
ROCKY MOUNTAIN WHITTLER
JUNE 2008/ PAGE THREE
be considered for Gene Therapy?
Ans: Regarding age, for clinical trials there needs to be some criteria for eligibility, but if the therapy is eventually approved there's no reason to believe it wouldn't work in older patients.
Ans: Comments on diet: I was referring simply to the fact that protein in meals will reduce the absorption of levodopa (Sinemet). I don't advocate a fancy or extreme diet--just good, solid nutrition.
If you have any more questions for Dr. Marks regarding his presentation, please bring them to our 7 Jun 08 Otis Park Monthly Meeting and pass them to me. Thanks!
Mary Kellerhals
2008 Symposium Chair
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I really wish I could say the May 10th Parkin' Lot Sale was a success, but unfortunately it was not, due to the weather that day. It rained in the morning then the wind just blew all day and that kept a lot of people away. I would like to send out a Special Thanks to Diana Begin, Cindy Stempson, Silvia Schmidt, Wanda Greenwald, Catherine Reed, Justin Moore and Agnesse Beard. These folks spent most all day in the cold and wind and thanks does not seem to do them justice. (Ed note: But we had a lot of fun and laughs, and raided the clothes pile for extra layers of clothing. Thanks to Allen and Dave Currin for organizing this fundraiser.)
Well there is all ways next year. Thanks to all who helped. Allen
East Side Caregiver Support Group. Will meet on Friday, June 20th from 2:00 PM to 4:00 PM at Mary Kellerhals', 4040 Poleplant Drive. If you are new to the group, call Mary at 574-9205 for directions.
Westside Resource and Support Group: Our May meeting at the Broadmoor Community Church was the last for patients meeting with Ira Rosenbaum until September.
CAREGIVERS, HOWEVER, HAVE AN OPPORTUNITY TO MEET WITH IRA on Friday, June 13th, 10 AM, at the Broadmoor Church, 315 Lake Ave. 80906. The purpose of the meeting is to discuss with Ira how better to communicate with our spouses and friends when the subjects that need to be raised may be “touchy” for everyone concerned. We tend to put off discussions we suspect will be difficult and yet they have to be faced - but how? That said, we're not limiting topics only to communication. Dr. Rosenbaum would appreciate receiving questions in advance if possible. If you are not a regular member of the Westside group, please call Pat Hudson ( 520-1154) for instructions.
JUNE 2008/PAGE FOUR
WORKSHOP FOR PEOPLE WHO ARE NEWLY DIAGNOSED WITH PARKINSON'S DISEASE
A workshop for newly diagnosed PD patients will be held in the Colorado Springs area during the month of June (or early July). Specific date, time and location to be determined.
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IN THE NEWS . . .
Eye cell implants improve Parkinson's symptoms
Tehran Times - By implanting specialized cells found in the human eye into areas of the brain damaged by Parkinson's disease, researchers were able to reduce symptoms and improve quality of life in people with moderate to severe Parkinson's. The new treatment, dubbed Spheramine, reduced symptoms experienced when people were off their Parkinson's medications by 44 percent for as long as four years of follow-up. Quality-of-life measurements were up about 23 percent, according to the study, expected to be presented April 29 at the American Association of Neurological Surgeons' annual meeting, in Chicago.
"This is a promising study on a form of therapy that is different from anything out there," said the study's lead author, Dr. Roy Bakay, a professor of neurological surgery and the A. Watson and Sarah Armour Presidential Chair at Rush University Medical Center in Chicago.
""This therapy may be beneficial in itself, or it may be used as additional therapy,"" added Bakay, who was at Emory University in Atlanta at the time of the study.
After 12 months, there was a 48 percent improvement in symptoms. At 48 months, that number had dropped to 44 percent, but Bakay said the researchers were pleased that the treatment maintained effectiveness for that long. The only significant side effect seen in this small study was a transient headache, he said.
Parkinson's News Update, Northwest Parkinson's Foundation, May, 2008,
www.nwpf.com
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HAVE A GREAT
SUMMER, EVERYONE !!!
UPCOMING EVENTS: See Inside for Details
June 7 Regular Meeting, 10 AM, Otis Park, Program: Breakout Sessions
June 13 Westside Support Group, 10:00 AM, Broadmoor Community Church, 315 Lake Avenue,
Pat Hudson
June 20 Eastside Caregivers 2-4 PM at Mary Kellerhals
June 21 Young Onset Group, Winslow Court, 3920 E. San Miguel, 10 AM, Allen Killebrew
July 5 Summer Potluck Picnic, Monument Valley Park (see flyer)
August 2 Summer Potluck Picnic, America the Beautiful Park (see flyer)
Exercise classes
with Barbara Willis meets on Thursdays at 10:30 am at Spectrum Rehab, 8TH Street and Arcturus. However, there will be no classes in July.
Colorado Parkinson Foundation, Inc. (
www.co-parkinson.org
Colorado Parkinson Foundation, Inc.
1155 Kelly Johnson Blvd., Colo Spgs, CO 80920