Parkinson Pathfinder
THE NEWSLETTER OF THE AMERICAN PARKINSON DISEASE ASSOCIATION INFORMATION AND REFERRAL CENTER OF WASHINGTON
Winter 2007/2008
“The Letter”
The following thank you letter was written in appreciation for all the incredible, selfless, and unwavering love and support that my wife and family have received since the day that PD enter our family. It began as a family tradition of having an end of summer / birthday party each August in the backyard of our Seattle home. My wife Suzanne, a gourmet cook to put it lightly, would invite about 14 or so of our close friends to a served, seven course, fabulous dinner. These dinners would often go on for 5 to 6 hours. I was diagnosed with PD in December of 1999, I was 39 years old. Our two sons were 8 and 10 years old. During the first year there were many ups and downs but after living in bush Alaska for a dozen years and having been a commercial crab and salmon fisherman most of my life, we thought we were not strangers to life’s challenges. (This shows a person how little anyone knows about the affects a chronic disease can have on them till they live through it themselves every day) Even so, Suzanne with her incredible creativity and fortitude came up with the idea to help raise funds to fight the battle against PD in her own way. She decided that she would organize and put on a dinner party and invite all our friends to come, with the focus on friendship and celebrating the good things in life and not solely collecting donations. She could in her own way help find the cure. We have gone from 14 guests to over 175, from one table in our backyard to 20 tables in 2 full houses. The parties have included things like live bands and valet parking. We have gone from raising 100’s of dollars, to over $30,000 this year. Everyone who comes donates in someway, whether it’s setting up, or helping in the kitchen, or cleaning up afterwards. This is often above and beyond their monetary donations. Suzanne has not quite nailed down our theme for next year; I hear rumblings about Cirque du Soleil. I haven’t decided yet where to put the Elephants. But I’m working on it! Dear Friends, In the summer of 1967 very few of us had any idea where we would be in the summer of 2007 or what we would be doing. How could we ever have imagined that all of our lives would be wound into the intricate tapestry of life we call community. The weave of this community has many different beginnings. Some of you grew up in this neighborhood and have been friends since childhood. Others met through their church, or like many of us, Suzanne and I included, met and built those friendships while raising and educating our children. All of the spaghetti dinners, ice cream socials, PTA meetings, auctions, and work parties on the school grounds have brought us together in ways that I know I could never have predicted or comprehended. It seems like the last 18 years of our lives have been wound so tightly around the care and nurturing of our children, time seems to have slid by in a flash. Is it possible that those little bundles of joy that seemed so tiny and vulnerable when we first brought them home, wrapped so tightly in those sweet smelling soft blankets, are now an entire generation heading out to work, college and to build their own communities. While attending the symposium on Parkinson’s this last weekend I was approached by a young woman. This woman had a mixed look of both desperation and fear that I recognized instantly, it was the look that has haunted me for the last 9 years since the day I came home and told Suzanne that I had Parkinsons. I introduced myself and asked if there was something I could do for her. It only took a few minutes of conversation to find out that her husband had been diagnosed in the last 3 weeks. They had 2 young children about the same age that Sam and Pat were when I was diagnosed. At this point the deja-vu was so strong that I almost started to cry myself. I knew what she was experiencing and I knew all the dark places that the lack of real information could take her. She asked me how I had coped with this disease for so long. I had to admit that, I’m still learning. It took me a moment to shake off that vertigo and to realize this woman desperately needed someone, anyone to help her know what going to happen to herself and her family in the coming years. The one thing I could tell her was that there was no way that I would be even standing there if it wasn’t for the help and support of our friends and our community. I went on to tell her about the affects that this disease has had on my family both good and bad. As the conversation continued I realized that I would have given anything at the time I was diagnosed to have a candid conversation with someone who had walked in the same path I was starting down. This is when I realized that I had been either blessed enough or lucky enough or both, to have kind friends and the type of community that has been there to hold my wife as she cried her way through our losses as well as standing shoulder to shoulder with us as we fight to keep our lives as “normal” for our kids and ourselves and raising funds to help find a cure. When I saw the woman leaving with her husband a few hours later she turned around and gave me something very rare in the world of P. D., a smile! Thank you all for helping us keep the smile on our faces, Chris Jewell & Suzanne Cameron P.S. You helped us raise $31, 650 for research.!!!!
President’s Report................................................... page 2 Executive Director’s Report .................................... page 2 Meet Marne Baca, Center Coordinator ................. page 3 Dystonia and Parkinson’s Disease .......................... page 3 Formation of a New Singing Group ....................... page 3 The Neuro Patch....................................................... page 4
In This Issue
PD Care Givers......................................................... page 4 The Gadget Junkie ................................................... page 5 Ask the Doctor .......................................................... page 5 Donations .................................................................. page 6 Support Groups ........................................................ page 7 Go Fly a Kite! ........................................................... page 8
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APDA Information and Referral Center Neurology, S-127 1660 S. Columbian Way Seattle, WA 98108 Phone: 206.277.5516 Fax: 206.277.4342 Hours: M-F 10am-3pm. apda@u.washington.edu For information packets, literature, or other Parkinson related issues, please contact the Information and Referral Center at the above address or visit our website at www.waparkinsons.org Medical Director Jim Leverenz, MD Co Medical Directors Phil Swanson, MD, PhD Ali Samii, MD APDA WA State Chapter Executive Director Evelynne Davis evedavis@gmail.com (425) 443-8269 Executive Board Peggy Abernathy Kevin Andrews Suzanne Cameron 2nd Vice President Jennifer Bell Dick Dunn President Dr David Greeley Valerie Kelly Dr Brooks Mackey Dr Laurie Mischley Peggy Newsom, Secretary Mike Shanahan Jan Shilling John Schofield Peggy O’Neill Shortt Dianne Spatz, Treasurer Rene Spatz John Wright Rochelle Wright Ann Zylstra, 1st Vice President
Board Address: P.O. Box 75169 Seattle, WA 98175-0169 Please Send Donations To The Board Address
Parkinson Pathfinder
President’s Report
It’s been a great time to be president of the Washington Chapter of APDA. I got installed in September. Almost immediately on September 15th Suzanne Cameron and Chris Jewell hosted their eighth annual Build A Benefit event at there home and raised $30,000 for local PD research, bringing their eight-year total to over $150,000. Wonderful job Suzanne and Chris! On October 12th and 13th our Chapter hosted our second annual two-day Parkinson’s retreat at Evergreen Hospital. This event targets Parkinson’s organizations from around the region and brings them together to collaborate on treatment and research. More than fifty people attended the sessions each day and the feedback from the attendees on the quality of the information disseminated and the speakers was very positive. Evie Davis was superb in planning, coordinating and generally putting on this program. On October 15th Marne Baca assumed her duties as our new Information and Referral Coordinator. Marne brings great experience and enthusiasm to the position. Most recently Marne provided program support to the Neurology Section of the Veterans Administration Puget Sound Health Care System. Marne’s office is in the VA Puget Sound in Seattle. She will work for us from 10:00 am until 3:00 pm five days a week. We are really excited about having her be with us. Also in October the 101 Club at the Washington Athletic Club presented Mike Shanahan it’s most prestigious award, the Torchy Torrence Award for community service. Mike’s many efforts on behalf of others were recognized at a luncheon ceremony attended by Mike and his family. Beginning with his exemplary military career through his years of service to the Boy Scouts to his many activities associated with his police work Mike was forced to endure a parade of admirers who spoke glowingly about what a truly remarkable human being Mike is. It was my pleasure to say a few words about Mike’s work in starting the hugely successful Rotary First Harvest feeding program and his creation of the Managing Parkinson’s : Straight Talk and Honest Hope DVD. The love in the room for Mike from his fellow 101 Club members was palpable. The Washington Parkinson’s Disease Registry is up and running. Fifty four people are currently registered with a eleven to be interviewed. Brochures which describe the registry’s purpose are in the process of being prepared for distribution. On November 10th APDA and NWPA hosted the Hope Conference , our all day symposium held this year at Hilton Seattle Airport & Conference Center. Over 500 people attended. Speakers included APDA board members Ann Zylstra and Dr. Jim Leverenz. Many volunteer hours went into putting on this event. Evie Davis did an excellent job of recruiting volunteers and coordinating the many many details involved in putting on something of this size. As the wise person once said, timing is everything. I really thank Ann Zylstra and Suzanne Cameron for having done so much so well prior to turning the president’s job over to me. I also thank them for staying on as co-vice presidents and for their continuing involvement in the important efforts of the chapter. Be sure to mark you calendars for the May 17, 2008 dinner auction to be held at The Naval Reserve Center, at South Lake Union Submitted by Dick Dunn
Executive Directors Report
Season’s Greetings to everyone – how fast the year has gone, and what a great year it has been for our Chapter. We had a very successful Auction/Dinner in April, a tremendous Symposium in November, and were have been able to implement many new programs this year – new support groups have started, old ones have been re-visited and our Board of Directors has grown. We are delighted to welcome Marne Baca as our new I & R Coordinator, and I know that over time you will all get to know her, and that our Information and Referral Center will be a great source of information for everyone who needs it. At this time of year I always ask you to please put something in the enclosed envelope, one of the new programs that we are hoping to implement in 2008 will be “Taxi Vouchers” which will allow those with PD who are unable to drive to be able to get 6 vouchers valued at $300 which will enable them to get to doctors appointments, therapy appointments, or just go shopping, without having to ask their care-giver or family member to take them – this program will cost in the region of $30,000, so please put a few pennies in the envelope, maybe you will be the one to benefit from the new program. On behalf of the entire Board of Directors and myself, I would like to take this opportunity of wishing you Happy Holidays and a wonderful New Year. Evie Davis
Season’s Greetings
On behalf of the Board of Directors we wish you Happy Holidays!
Parkinson Pathfinder
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Meet Marne Baca, Center Coordinator
As the Coordinator of the Information and Referral Center, my twofold mission is: a) to help you to find referrals to highly qualified care providers and b) to make available the educational resources. It’s a big job and I believe that doing it right means finding out firsthand what patients and caregivers need most, in terms of referrals and education. To do that I will be attending as many support groups as possible over the next year, so I hope to meet members of the community in person. I also encourage people to drop me a note via email at apda@u.washington.edu or contact me by phone at 206.277.5516. A little about my background -- my professional experience is diverse, including program management and project coordination in health care, several non-profit organizations and in the technology sector. Most recently, I provided program support to the Neurology section at the VA Puget Sound Health Care System. I am also a student, working toward becoming a nurse. In my spare time, I enjoy spending time with my family, swimming, gardening, reading and watching movies. Marne Baca
Dystonia and Parkinson’s Disease
Dystonia is a neurologic condition characterized by abnormal movements due to sustained muscle contractions, frequently causing twisting and repetitive movements or abnormal postures. It can happen in isolation with no known cause, or in association with other neurologic conditions such as Parkinson’s Disease (PD). Dystonia can involve any body part, or sometimes several body parts. One type involves curling of the toes and/ or fingers, and can be more severe on one side of the body (asymmetric). Another type involves twisting of the neck, and sometimes shaking of the head (cervical dystonia, or spasmodic torticollis). Some patients note difficulty keeping their eyes open even when they are awake, or experience involuntary closure of the eyelids which can interfere with vision (blepharospasm). Often they feel their eyes are itching/ burning or sensitive to light, or feel the need to “rest” the eyes. Another type involves bending of the spine, which can range from a slight leaning to one side, or cause severe bending of the spine either forward (camptocormia) or slumping to one side. Sometimes dystonia can be painful, either from the spasms themselves or indirectly, via toes rubbing on shoes or pinched nerves. Other times it is painless but can interfere with quality of life in other ways. For example daily activities like driving or walking can be difficult if eyelids keep closing, or with severe twisting of the neck or spine. Dystonia can be influenced by medications used to treat the symptoms of PD, and can wax and wane depending on dopamine levels. For example, patients often note painful toe cramping either early in the morning before the first dose of medications, or between doses of sinemet as part of the “wearing off” phenomenon. In this situation, the curling is relieved by taking the next dose of medication, or taking doses closer together so they don’t wear off. In contrast, dystonia can also be a side effect of too much dopamine medication. In this situation, some twisting movements can be mixed with the more typical choreiform dyskinesias (wiggling movements) often seen with levodopa (sinemet) use. In this case, smaller more frequent doses of medication, or adding on other medications such as amantadine can be helpful. In select cases, deep brain stimulation (DBS) surgery can also help alleviate the “ups and downs” of medications which contribute to these abnormal movements. Sometimes dystonia is persistent, whether the dopamine medications are ON or OFF. In these cases, botulinum toxin injections (Botox or Myobloc are 2 brands commonly used). A small amount of purified “botulism” toxin is injected into specific muscles, which temporarily relaxes the overactive muscles by blocking the signal telling the muscle to contract. Botulinum toxin injections can be successful treating a variety of conditions including dystonia of the eyelids, facial muscles, neck muscles, curling of the hands or feet, or even the trunk. The benefits of the injections generally last 3-4 months and have much fewer side effects than oral medications. Some pills including anticholinergics (trihexphenidyl, benztropine, procyclidine) or muscle relaxants (clonazepam, diazepam, baclofen, tizanidine) can help with spasms, but tend to cause more side effects (drowsiness, dry mouth, constipation, confusion). In summary, if a patient with parkinson’s disease is experiencing symptoms such as painful curling of a limb, twisting of the neck or spine, or involuntary eyelid closure, these symptoms can often be treated successfully with a variety of measures including medication adjustments, botulinum toxin injections, or sometimes deep brain stimulator (DBS) surgery, and it may be helpful to discuss such symptoms with your doctor. Susie Ro, MD
Formation of New Singing Group
Attention all singers and would-be singers – lend your skills to a new vocal group that is forming this winter. No prior experience is necessary – just a desire to sing and socialize with like minded people. Come and exercise your muscles for speech. The group is open to people diagnosed with PD and those that support them. For more information, please contact: Nola Beeler at njbeeler@comcast.net or 425.774.3297 or Lynn McGlocklin at l.mcglocklin@comcast.net or 425-454-7183
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Parkinson Pathfinder
The Neupro Patch
Background Parkinson disease (PD) is a progressive degenerative disease that affects many parts of the brain. The motor signs of PD which include tremor, rigidity (stiffness), and bradykinesia (slowness of movement), are thought to result from loss of dopamine-producing cells in a part of the brain called substantia nigra (black substance). Dopamine is an important chemical messenger in the brain. For more than four decades treating the motor symptoms has been accomplished mostly by using dopaminergic drugs. These include a dopamine precursor (levodopa which becomes dopamine in the brain), dopamine mimickers (called dopamine agonists), dopamine level enhancers (e.g. selegiline and rasagiline), or levodopa level enhancers (entacapone). As PD progresses, fluctuations in motor symptoms become commonplace. There can be rapid and unpredictable transitions between “off” states (when motor symptoms are poorly controlled) and “on” states (when motor symptoms are better controlled). Although disease progression is thought to be the main underlying cause of motor fluctuations, pulsatile delivery of dopaminergic drugs has also been implicated in causing fluctuations. Therefore, over the years, mutiple attempts have been made to come up with longer acting drugs (like Sinemet CR, Stalevo, or longer acting oral dopamine agonists), continuous infusions (such as the apomorphine pump in the UK), or patches (such as the Neupro patch). The Patch Neupro is a new skin patch that was approved by the Food and Drug Administration (FDA) in May 2007 for use in early Parkinson disease (PD). It is not yet FDA approved for more advanced PD patients who have motor fluctuations, but studies in those patients have yielded good results and the patch may be FDA approved for more advanced PD in 2008. How it works The patch delivers the drug rotigotine, which is a dopamine agonist (a drug that mimics the action of dopamine), through skin absorption into the blood stream. The patch is designed to be worn 24 hours per day and be changed once daily. The patch provides a steady and nearly constant level of the rotigotine in the blood. Advantages Theoretically, this steady continuous dopamine stimulation may lessen the risk of motor fluctuations in the future. Another advantage of the patch includes not having to worry about food interactions and the timing of meals. Side Effects Side effects include skin site reaction plus adverse effects similar to those of other dopamine agonists: nausea, dizziness, drowsiness (including rare sleep attacks), leg swelling, impulse control problems (like compulsive gambling), and rarely hallucinations. Dosage The patch comes in three different doses in the United States: 2mg/24hr, 4 mg/24hr, and 6 mg/24hr. The size of the patch increases with each increasing dose. One usually starts with the lower dose and gradually increases the dose to 6 mg/24hr. The 6 mg/24 hr patch is 30 cm2 which is a little over 4 square inches. The patch should be placed on an area of clean, dry, healthy, and hairless skin on the shoulder, upper arm, flank (between the ribs and pelvis), belly, or thigh. Each patch should be applied to a different site each day, and the same site should not be used more than once every 14 days. The patch should be pressed on the skin for 30 seconds to make sure it sticks well. The patch can be worn while swimming and in the shower, but not in the hot tub or sauna. Submitted by Ali Samii MD, Medical Co-Director, APDA I&R Center
PD Care Givers
CARER is an English term that roughly translates into caregiver in the U.S. Because of the connotation of care giving implying physical support many family members feel they don’t fit the description. Yet a family member that plays an important role in the life of a person with PD is a CARER even when the loved one is physically independent. That is why I prefer the designation of CARER and feel that husbands, wives, children and siblings might benefit from the support of their own community. Being a CARER poses challenges that impact a person’s physical, mental and emotional well being. PD affects the individual, the couple, the extended family and the person within the community. A CARER needs to understand and evaluate his or her place in this new reality. A CARER GROUP can offer the privacy and safety to explore these changes with other people who understand. CARERS need information and resources about PD and their role in providing support. CARERS need to be able to express frustration, receive encouragement and develop new strategies in their role as support person. They need to acknowledge the range of feelings that can emerge when filling this new position. CARERS need to develop self-care skills to maintain positive mental health because the progression of PD impacts all family members. CARERS need to plan ahead and become informed about alternatives as the disease progresses. The WASHINGTON STATE APDA, IN MEETING THEIR MISSION TO EASE THE BURDEN, PROVIDES RESOURCES AND SUPPORT TO PERSONS WITH PD AND THEIR FAMILIES. THEY OFFER 3 PD CARERS GROUPS as well as individual counseling. Teen support is also available. A CARERS Group, not sponsored by APDA, is offered at the Booth Gardener Care Center. Below is a list of CARER SUPPORT GROUPS. IF you have any questions or concerns regarding these groups or want to request an appointment please call me at 206-230-0166 or email at socialwkr@earthlink.net PD CARERS - MERCER ISLAND - SECOND THURSDAY OF MONTH COMMUNITY CENTER AT MERCER VIEW – 8236 SE 24TH JAN 10 FEB 14 MAR 13 PD CARERS – SEATTLE – SECOND TUESDAY OF MONTH –GREENWOOD SENIOR CENTER 525 N. 85TH JAN 8TH FEB 12 MAR 11 ADULT CHILDREN - -THIRD MONDAY OF MONTH – COMMUNITY CENTER AT MERCER VIEW JAN 14 FEB 11 MAR 17 (NOTE CHANGES DUE TO HOLIDAYS) Carin Mack, MSW
Parkinson Pathfinder
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The Gadget Junkie - Born Too Be Wild
By Mitchell Levy (December 2007) Sun shining, a gentle breeze along the slough trail, as I peddle faster my bicycle goes faster and that cool breeze even starts to feel a little chilly and it feels great. Then I was diagnosed with Parkinson’s disease and as my balance became more unstable the more uncomfortable I became riding my bicycle. So I STOPPED riding my bicycle almost 10 years ago. I also missed riding my bicycle for about 10 years. A few months ago I was meditating and repeating my two favorite mantra’s “Use It Or Lose It” and “If you can’t do what you used to do and you enjoyed doing it… don’t stop doing it… ADAPT.” I surfed the internet, talked to friends, looked at cycling magazines and visited bicycle shops and test rode all sorts of interesting modes of transportation. Like the story of the “Three Bears” with this one being too big and that one is too small and this one is just right I selected the Sun EZ-3 USX http://www.sunbicycles.com/sun/recumbents/ez3USX/ez3USX.htm and wow! WOW! It is as though the designers knew I have Parkinson’s and designed it just for me. Almost all of the trikes I tried were difficult to get on and off. I would go to step over the bar on the trike and most of the time I would freeze and I couldn’t get my leg over the bar. Except on the Sun EZ-3 USX. To mount the trike I just stood in front of it with my legs spread and slid the trike forward under me and sat down. To dismount I would just stand up with my legs spread and slide the trike backward out from under me. Because this tricycle is a recumbent it is extremely comfortable and peddling is easy as the 21 gears will almost effortlessly take you over any terrain. As my dexterity is a bit of a problem at times the handlebar shifters are easy to operate as is the 3 wheel disc brakes. It’s like riding a lounge chair with wheels. Naturally I recommend that you detail the trike by adding a flag for visibility, as well as hi intensity flashing LED safety lights and a good headlight. At some point and time you will need to stop and get off the trike and if your balance is bad like mine, you will need your cane. You can buy an optional cane holder for the tricycle for about $35.00. Or you can do what I did which is to go to Home Depot or Lowe’s and buy some PVC 1 ½ diameter pipe, cut off a piece about 30” long, drill 4 small holes, put 2 cable ties through the 4 holes and attach it to your tricycle. Cost is less than $5.00. I’m in the process of mounting an electric motor to the tricycle for use in the event that I have a freezing episode or I hit my off period, or any other situation that would prevent me from peddling. This is a safety feature to prevent me from being stranded, giving me enough electric power to get to a safe location, power enough to take me 10 miles. As you read this you are probably thinking that this sounds great but it also sounds expensive. To put this in perspective I just got a 4 wheel walker for my “really bad days” and it cost about $709.00. The Sun EZ-3 USX cost about $1000.00 (if you really search on the internet you might be able to get it for $900). Well let’s compare these wheeled devices: 4 Wheel Walker 2 speeds, slow and stop Aerobic workout not likely Useful but not much fun Using it will improve your health Uncomfortable seat 4 Wheels (but they’re little) “Institutional” looking Sun EZ-3 USX Recumbent Trike 21 speeds and plenty fast Great aerobic workout Useful and lots of fun Using it will improve your health Comfortable seat 3 wheels (but they’re big) Cool looking
Bottom line… I use my Sun EZ-3 much more often than I use my 4 wheel walker and I hope it stays that way for many years to come. The more I use the Sun EZ-3 the more likely that will be true. See you on the cycling trails! If there is a gadget you can’t find, tell me about it and I’ll help you find it. If you have a favorite gadget that you’d like to share with Pathfinder readers tell me about it. gadgetjunkie@comcast.net
Ask the Doctor
Q: I develop “dancing movements” of my legs at different times during the day. I take carbidopa/levodopa for my Parkinsons. Are the movements due to too much or too little medicine? What can be done to reduce these movements. A: These movements likely are what are called “dyskinesias”, but it is important to be sure that they are different from the regular shaking or tremor that may be one of the symptoms of Parkinson’s Disease itself. Dyskinesias are usually caused by the medicine that is used to treat PD, especially levodopa. The most common type are “peak-dose” dyskinesias, thought to be due to somewhat high levels of levodopa in the body. Dyskinesias may be mild or severe, and can be quite disabling when severe. They will go away when the dose of carbidopa/levodopa is reduced. However, in some people, lowering the carbidopa/levodopa to reduce dyskinesias results in the return of PD symptoms, making it very tricky and sometimes not possible to get rid of them entirely. Another form of dyskinesia has been called “diphasic dyskinesia”. Rather than being most severe when the levodopa levels are highest, diphasic dyskinesias occur when the level of levodopa is rising or falling, and then improve by themselves. These are much less common than are “peak-dose” dyskinesias. These movements can be rather strange, such as “bicycling” movements of the legs. They can often be controlled by moving the doses of carbidopa/levodopa closer together, so that the movements mainly occur with the first dose and the last dose of medicine in the day. Having quite severe dyskinesias is one of the reasons why some people elect to have “deep-brain stimulators” placed in the brain. The stimulator can allow a person to reduce the amount of carbidopa/levodopa needed during the day and can thereby reduce the severity of the dyskinesias. Phil Swanson, MD, medical Co-Director, APDA I&R Center
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Parkinson Pathfinder
Thank you for your Greatly Appreciated Donations!
Donation Names, September 12 – November 26, 2007
Donations:
Anonymous J. David and Laura Matter Dwight and Carol Moore Marjorie Schnapp Arthur Piehler Bruce and Aase Marie Miller Paul Thonn Capt. Clifford Hubbard Willis and Margery Jane Hjellming Wayne and Glenna Atwood Norman and Kathryn Adamson Russell and Kathleen James Eric Beck Brenda J. Yamamoto Jonathan Schwarz David Polmaszcek Renee Stein Dale Callison Eric Camplin Angela Harbaugh Morris G. Kremen Rebecca Morgan Deborah O’Brien Henry Judson Richard Brown Suzanne Conte William and Patricia Cooke Mary Helen Smith David and Donna Ensberg Charlotte Browning Janet Larson Betty Bryant
(Barbara Brown) (Vada L. Higbee) (William and Shakeh Iverson (Deborah and Bentley Adams) (Elmer and Margaret Hagardt) (Nancy Garrison) (M. D’Angelo) Richard Stormo (Rosalie and Gary Stormo) Sheryll Harbaugh Acknowledgment Sent (Maria Linde) Katherine Oldroyd (Ralph Oldroyd)
Donations in Honor of: (and Donor)
Hal Newsom Acknowledgment Sent (Carin Mack) Fran Baker-Ide (Glen and Karen Owen) Pat Hoyt (James Hoyt) Peggy Newsom (Gretchen and Lyman Hull) Charles Moscato (Margaret Moscato) Richard Van Reeth Acknowledgment Sent (Lon and Carolyn Hoover)
Corporate Donors:
American Parkinson Disease Association (for Pathfinder Newsletter) American Parkinson Disease Association (for Straight Talk DVD update) Microsoft Matching Program Allstate Giving Campaign
Donations for Straight Talk:
Barbara Joerdsma William Goode Alan Regimbal
Donations in Memory of: (and Donor)
Frank Veitenheimer (Linda Marie and Thomas Kelly) (Douglas and Ann Carpenter) Verna Jones Alston Acknowledgment Sent (Kirby Walker) Alice McCarthy Hayes Acknowledgment Sent (Mary Flaming) Adele Pay Acknowledgment Sent (Marjorie Guy) George Gudyka Acknowledgment Sent (Kurt and Nancy Tegman) (Barbara Peretti and family)
BuildABenefit 2007 Donors
Lynn and Stewart Tilger Barbara and Roger Howson Tessie and Glen Wong Marcia Newlands Kathryn and Frederick Adolphsen Pauline and William Spencer James Verdery and Mary Cameron Dokey S Groves M Bombara Charles and Joann Lewis Nick and Trish Nilsen Frank and Roberta Troske P Seldon Prentice and Carl Blackstone Dana Dimmick Scarp Pete and Randi Jo Mezich Steven Gaffin Marcus Latham
J.P. and Josephine McGillicuddy Tamera Van Ness K.R. Aldridge Anthony T Salamony Robert and Bonnie Berg Michael and Sue Kimble Niland Bruce Goldstein Kaz and Elka Zawitkowski Bebby Wen Tsuang and David Diekema L Christine Tesar Davney and Robert Stahley Joann and Bill Williamson Henrik and Ann Kuoppamaki Eileen Quackenbush Advanced Insurance Solutions Inc. Reese-Meyer Inc S.L/C.G Wright Charles and Lori Ann Mandigo Alexander and Kelly Kipkalov Abbe and Saul Stashower Laura Feshbach Alexander Harmatta Sandra and W Patrick McKelvey Dianne and Renee Spatz Katherine Dietz and John Hartmann Kim Taylor Nancy and Robert Fuller Mary Jane Thomas and Frank Guarino Malcolm and Brenda Allred Mitchell and Julie Day Dianne Murray William Zachary John and Marilyn Klepper Richard and Barbara Jones Jeffrey Lounsberry Kurt and Ann Zylstra Lawnkeepers Landscape Co William and Debbie Hayes Rex Allen Lisa Beulaurier Paula Johnson Michael and Jo-Anne Shanahan Robert Dickerson Courean Anne Napolitano Fishing Vessel Eastwind Inc Randy Self Jane Ann and Joseph Galloway Ken and Alisa Malloch Moria and Michael Beck Mariann Wilson George Darey and Virginia Akabane Sandra Valdivia Claire and Mike Vitolo Kenneth and Juli Bunting Barbara Barronian Louis Gellos and Linda Hilliard John and Jennifer Fallon
David and Kimberly Eickerman Clifford and Kay Kurtzweg Rosette Gault Melissa and Jorge Correa Caroline Crabb Susan Palewicz Michael/Patti Mincemoyer Kay Kornovich Beth and Jack Kolle Martin Wech Hal and Peggy Newson J.D. Cameron Lisa and Brian Koblenz Bruce Leone General Contractor Ellen Purington Leanne and Randy Devitt Rochelle and John Wright Chuck and Margaret Flaherty Vincent and Anne Ryan Philip Hingston Inc Gabrielle Omalley Thomas and Lynn Muramoto Lawrence and M Lee Kowbel Dianne Girard Terri Hobbs Mittelstaedt Foundation Enviro-Tech Diving Inc Michele and Gary Raymond Collen and James Deymonaz James and Carol Cameron Irene Fury Charles and Diane Bundrant JMN Consulting Engineers Douglas and Cynthia Bain Trident Seafood Corporation John Minto Cash Northwest Parkinson Foundation Susan and Dean Brown Kevin and Carolyn Clark Catherine Hoffman Miller Brendan and Patricia Hardy William Meyer Mr & Mrs Loren Hostek Sam & Lisa Howe Verhovek Charlie and Jennifer Allen Scott/Margaret Cameron/Maguire Kimberly Kinzer Peter and Annemarie Colino Betty and Robert Kobayashi Gregor and Denise Brooks William and Sara Olson Maroni Construction Inc Sonna Ghilarducci RBC Dain Rauscher
The 6th Annual Dinner and Auction
Save-the-Date
May 17 , 2008
South Lake Union Naval Reserve Center Seattle, Washington
Saturday, th
The Magic of Hope Continues… Live & Silent Auction
Come Make Some Magic!
Airline tickets, cruises, hotel & restaurant packages and much more.
For tickets & information contact: Evelynne Davis at 425.443.8269 or evedavis@gmail.com
Parkinson Pathfinder
Washington State Parkinson Support Groups
*Mercer Island PD Carers -- Community Center at Mercer View Contact: Carin Mack 206.230.0166 socialwkr@earthlink.net 2nd Thurs of the month 1:30 PM *Mercer Island Adult Children of Parents with PD -Community Center at Mercer View Contact: Carin Mack 206.230.0166 socialwkr@earthlink.net 3rd Mon of the month 7:00PM North Seattle/Shoreline Shoreline Senior Center Contact: Scott Tieson 206.365.7593 SCOTTTH@SENIORSERVICES.ORG 3rd Tues of the month 12:30PM Oak Harbor Oak Harbor Senior Center Contact: Carolyn Hansen 360.279.1785 1st Friday of the month 1:00PM Olympia Westwoods Assisted Living Contact: Karen Williams 360.956.3396 kwilliams@alcco.com 3rd Tues of the month 11:00AM Port Angeles/Sequim Port Angeles Senior Center Contact: Jan Yates 360.457.9746 4th Wednesday of the month 10:30 AM Port Townsend Jefferson Healthcare/Telehealth Contact: Mark Cherniack 360.385.2200 mcherniak@jgc.org 3rd Mon of the month 2:00PM Puyallup United Methodist Church Contact: Shannon Tait 253.697.8533 shannon.tait@goodsamhealth.org 3rd Thurs of the month 1:30PM Puyallup Caregivers Support Group (Not Only PD) Good Sam Community Services Contact: Kathy McCormick 253.697.8400 2nd Monday of the month 1:30PM Redmond Emerald Heights Contact: Suzanna Eller 425.556.8154 suzanne@emeraldheights.com 3rd Thurs of the month 1:30 PM Renton Merrill Gardens at Renton Centre Contact: Barbara Shull 425-235-6400 3rd Wed of the month 1:30PM Richland Neurological Research Center Contact: Heidi Hill 509.943.8455 hillh@kadlecmed.org 2nd Thurs of the month 1:30 PM *Seattle Seattle PD Carers -Greenwood Senior Center Contact: Carin Mack 206.230.0166 socialwkr@earthlink.net 2nd Tues of the month 1:00PM Seattle Well Spouse -- Greenwood Senior Center Contact: Carin Mack 206.230.0166 socialwkr@earthlink.net 1st Mon of the month 4:00PM Seattle Young Onset -- meets in members homes Contact: Suzanne Cameron 206.286.8149 2nd Tues of the month 7:00PM
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APDA serves as a clearinghouse for PD Support Groups. If you know of one not listed, listed in error or would like to see one created, please tell the Information and Referral Center via contacts on page 2. For Support Groups in Oregon, Alaska and Hawaii, also contact the I&R Center.
Idaho
Coeur D’Alene Lake City Senior Center Contact: Karen Goodson 208.689.3109 1st Friday of the month 1:00PM
Washington
Auburn Wesley Homes Contact: Geri Montoya 253.876.6014 1st Friday of the 10:00AM Bainbridge PD Young at H.E.A.R.T Group Contact: Steve Bohannon 206.842.0226 sbohann@msn.com 1st Mon of the month 1:00PM *Bellevue Young Onset -- Bellevue Senior Center Contact: Carin Mack 206.230.0166 socialwkr@earthlink.net 1st Wed of the month 7:00PM Bellingham Parkway Chateau Contact: Debra Ivanovich 360.724.3382 2nd Monday of the month 2:00PM *Bothell North Shore Senior Center Contact: Susy Favaro 425.486.4564 suzyf@seniorservices.org 2nd Tues of the month 10:00 AM Bremerton Harrison Rehabilitation Services, Canterbury Manor Contact: David Hull 360.895.6220 1st Tues of the month 1:30PM Chehalis Dayspring Baptist Church Contact: Gwen Moor 360.858.1206 happygp@juno.com Des Moines Wesley Homes Contact: Rita Lambert 206.870.1302 rlambert@wesleyhomes.org 4th Tues of the month 10:30AM Edmonds South County Senior Center Contact: Kathy McNutly 425.774.5555 njbeeler@comcast.net 2nd Wed of the month 1:00PM Everett Rainer Room, Colby Campus, Providence General Hospital Contact: Kathy Kidd, Karen Painter 425.327.9401 thekidds@msn.com 4th Sat of the month 2:00PM *Issaquah Our Savior Lutheran Church Contact: Carin Mack 206.230.0166 socialwkr@earthlink.net 2nd Monday of the month 1:30PM Lakewood St Mary’s Episcopal Church Contact: Doris Gilmore-Sherwood 253.582.8421 dbgilmore1212@aol.com 2nd Tues of the month 1:00PM Longview Canterbury Inn, 3rd and Hudson Contact: Barbara Sudar 360.423.7012 bnbsudar@msn.com 3rd Wed of the month 1:30PM Kirkland Caregiver Support Group Tan 138 at Evergreen Hospital 4th Monday of the month 12:30 - 2pm Mercer Island Community Center at Mercer View Contact: Carin Mack 206.230.0166 socialwkr@earthlink.net 1st & 3rd Tues of the month 2:00PM
Seattle First Hill Virginia Mason Medical Center Contact: Laurel Beck 206.652-7373 x64553 laurel.beck@vmmc.org 1st Tues of the month 1:30PM Spokane St. Lukes Rehab Institute Contact: E’lise Balogh 509.483.6740 3rd Mon of the month 2:00PM Spokane (Dystonia) St. Lukes Rehab Institute Contact: Denise Gibson 509.891.9131 denise@designden.com 2nd Sat of the month 1:00PM Spokane (Women’s) Location changes -- contact group leader Contact: Julie Willis 509.467.2240 1st Thurs of the month 1:00 PM Tacoma Tacoma Lutheran Home Contact: Sharon Jung 253.284.4488 3rd Friday of the month 11:30AM Vancouver Legacy Salmon Creek Contact: Lynda Forbes-Cramer 360.546.1763 lfcramer@comast.net 3rd Sat of the month 1:00PM Vancouver Locations and time varies Contact: Jeanne 360.892.0686 Vashon Island Contact: Kate Lanigan 206.463.3140 Walla Walla Congregational Church Contact: Darlene Lambert 509.382.4012 4th Sat of the month 6:00PM Washington Peninsula Ocean Park Lutheran Church Contact: Patti Pellerin 360.665.3284 4th Fri of the month 1:30PM West Seattle Admiral Congregational UCC Contact: Katie Stokely 206.933.5931 3rd Thurs of the month 1:30PM Yakima Park Meadows Contact: Jaci Rice 509.248.9963 2nd Thurs of the month 2:00PM The APDA would like to introduce the following support groups: Edmonds (newly reformed) Lakewood Oak Harbor Redmond Renton Call 206-277-5516 for more information.
Parkinson’s Communication Group 1:00 - 2:30pm $5 per session 1st Wednesday of each month Hosted by Speech Pathologist Shirley Glazer, MS, CCC Call 425.899.3000 to register
Before joining a group, please contact the Group Leader to confirm location & schedule. SUPPORT GROUP LEADERS NEEDED! LET ME HELP YOU GET STARTED! Contact I&R Center, see page 2
*Denotes APDA Affiliation
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Parkinson Pathfinder
GO FLy A KITE!…for the health of it!
By Richard Price. First Hill Seattle PD Support Group Participant. (This is the 3rd installment in a series on all you’ll need or want to know about kites & kite flying). Well Hello again and welcome back! In today’s installment we are going to take a brief look at how kites evolved over time and are universal. Most of the following comes from “The Great Kite Book” by Norman Schmidt. “Who flew the first kites? While that is not known for certain, probably they were invented quite independently in different parts of the world. Kites first appear in the folklore and ancient writings of oriental cultures. Simple kites consisting of little more than a large tropical leaf on a line, used for fishing, were common in the South Sea Islands. On the Chinese mainland people built and elaborately decorated more sophisticated kites that were flown for military and ceremonial purposes. Although kites were known in early western society and for a time also had a ceremonial and military significance, they were eventually regarded as useless objects. Kites in the west gained no religious importance, and increasing urbanization and industrialization prevented the gentle art of kiting from becoming popular. Only during the brief time of experimentation with flight that preceded the invention of the airplane, when kites fired the western imagination with visions of human flight, did kiting become significant. Once airplanes were a reality, however, the popularity of kiting waned. Consequently, many individuals have never experienced the pleasures of homebuilding these simple airborne wonders. And many people in western cultures still consider kiting an idle waste of time—hence, Go Fly A Kite, has become a derogatory expression. Other people feel intimated by kiting, thinking that it is too complicated for them, or they are afraid their kites won’t fly because they have no experience with such airborne things. But times are changing. Industry and technology have not been altogether bad for kite making. They have yielded materials that are ideally suited to this art, and kite enthusiasts are taking advantage of them to create new styles and types having increased maneuverability. This has allowed kite flying to be organized into competitive games, and kiting has become a sport, making kites more visible in many communities around the world. Consequently more people feel inclined to give kiting a try, and kite flying for fun is gaining in popularity once again.” Many people out there love kites, kite flying, and anything associated with it. Kites are more popular now than at any previous time in history. While the maneuverable kites have captured the imagination of many, there are also many people who have discovered the beauty and peacefulness of single line flying. Kite festivals around the world are multiplying at an astonishing rate. “As a sport, or a hobby, kites have much in their favor. They are cheap, quite easy to make, and most importantly, kites can teach the maker much about the physical world.” “While people fly kites for different reasons, nothing quite matches the satisfaction of getting a kite of one’s own research and creation airborne. This is the essence of the art of kiting. It connects the kite flier with the past and gives a sense of participating in something historically significant, knowing that countless numbers of people around the world have engaged in this distinguished activity since time immemorial. Kiting provides mind-soothing satisfaction when that fragile creature, hovering, swooping, swaying back and forth, gently paints the canvas of sky overhead. And a sky full of kites is truly an inspiration to the human spirit.” Next time: How Does A Kite Fly + The Wind & More.
University of Washington Department of Neurology Box 358280 Seattle, WA 98195 Attn: Marne Baca (S-127)
Non Profit Org. US Postage PAID Seattle, WA Permit #62
Is your address correct on this mailing?
Returned and duplicate mailings waste valuable funds needed for Parkinson Research and support. Please submit any address or name corrections to APDA by contacting the I & R Center by phone, mail or email at the contact information listed on page 2. Please take a minute to do so ~ we will all Benefit!