a message from our board president the rezak report a new long
Transcription
a message from our board president the rezak report a new long
progress w w w. p a r k i n s o n s p r o g r e s s . o r g PA R K I N S O N ’ S D I S E A S E R E S E A R C H S O C I E T Y Facing the challenge...Finding the cure SPRING 2013 - ISSUE NUMBER 20 A M ESS AG E F R O M O U R B O AR D P RE SID E NT Dear Friends, It has been an exciting start to the New Year for PDRS. Most newsworthy, PDRS has completed payment on a $1.4 million pledge to Cadence Health in support of Dr. Rezak’s pioneering work in the field of Parkinson’s. This contribution will be used to help Dr. Rezak and Cadence establish the most comprehensive patient care and clinical research center in the country. The need remains clear: n Parkinson’s Disease is the most common movement disorder. n 2 million people in the US currently are diagnosed with Parkinson’s disease, and 70,000 new cases are diagnosed each year. Hundreds of thousands of baby boomers will be affected in this decade, alone. n Although Parkinson’s disease usually affects people over age 50, eight to ten percent of patients are under 40 when diagnosed. n Scientific investigators anticipate several key research breakthroughs in the next five years. Currently, Dr. Rezak, Dr. McGraw and their team serve over 1,000 patients. Additionally, the medical team performed 42 Deep Brain Stimulation procedures last year, more than any other medical center in the Midwest. As many of you know, we officially partnered with the Cadence Health Foundation last year. In turn, for financially supporting Dr. Rezak’s work, the Foundation staff has committed to assisting us with all of our events. Our partnership with this vibrant medical center allows us to redouble efforts to raise needed funds. Cadence Health shares PDRS’ vision. The medical center, located in the western suburbs of Chicago, is rated one of the top 100 hospitals in the country, with medical specialties in the fields of Neurology, Pediatrics, Orthopedics, Cardiology and Pediatrics. Cadence is partnered with the Cleveland Clinic in both fields of Cardiology and Oncology (Cleveland Clinic has been rated #1 in Cardiology by the US News and World Report 18 years in a row. It is rated #9 in Oncology). Children’s Lurie Hospital is also affiliated with Cadence – bringing the expertise of an urban academic medical center to the western suburbs of Chicago. Cadence serves an area extending 400 square miles, serving 1.1 million; or 1 out of 4 people in Chicago’s Western Suburbs. As I enter upcoming PDRS events in my calendar, I am reminded that we have a busy year ahead of us. More than ever, we need your help to reach our goals and impact the lives of those battling Parkinson’s disease. Thank you for your continued support in our quest to “Find a Cure”. Carol Santi, President THE RE Z AK REPORT Dr. Michael Rezak, a neurologist and Movement Disorders Specialist, also serves as the Medical Director of the PDRS and the APDA Midwest Information and Referral Center and National Young Onset Center. He practices exclusively at the Neurosciences Institute of Central DuPage Hospital where he heads the Movement Disorders Center and the Movement Disorders Functional Neurosurgery Program. A NE W LONG AC TING C AR BIDOPA / LE VO D OPA FO R MULATION MI C H A EL R EZ A K, M.D., PH .D. Rytary™ (formerly known as IPX066), although not yet released, has been shown to be effective in treating both early and later stage Parkinson’s disease symptoms. It is a unique formulation of carbidopa/levodopa due to its longer and more stable duration of action compared to immediate release carbidopa/ levodopa or even carbidopa/levodopa with comtan (Stalevo®). Rytary™ capsules are manufactured so that they contain beads that release carbidopa/ levodopa at different rates as they dissolve, thereby allowing absorption in the gastrointestinal tract over a prolonged period of time. At the same time, this means higher doses of levodopa are required to achieve The Rezak Report continued on page 3 www.parkinsonsprogress.org YOU’VE BEEN DIAGNOSED WITH PARKINSON’S DISEASE, NOW WHAT? B Y A L I S ON MON ET T E, R N , BS N GET SUPPORT Terminology There is immeasurable value in organizing a team of people who will travel through this journey with you. Your core support circle should consist of the people who you know and trust the most, be it family, friends or both. Discuss the diagnosis and your feelings about it to help you come to a place of greater acceptance. Start with the basics of the disease and familiarize yourself with commonly used terminology so you can communicate to your physician what symptoms need to be addressed. Some commonly used terms include: ON/OFF: “ON” time is when you are functioning best, your tremor is well controlled and/or your movement is less slow and less rigid. “OFF” time is when you have your most parkinsonian symptoms, movement is more difficult and you cannot function as well. Next, you need to find medical professionals with whom you can develop a long-term relationship. Consider working with a neurologist who is a movement disorders specialist, as they are the most well trained physicians to manage your symptoms and keep you aware of advances in treatment. Look for a physician who is knowledgeable, experienced and invested in you doing well in every aspect of your health. Take the time to learn about your physician’s philosophy of how and when to start or change medications as this can vary from doctor to doctor. Consider getting established in a practice where your physician is part of a multi-disciplinary team that includes nurse specialists, physical therapists, social workers and other specialists as evidence shows that this model of care leads to the best outcome. Dyskinesia: involuntary rhythmic movements that usually occur when your medications are at peak effectiveness, but can also happen when you are OFF or wearing off. Dystonia: involuntary spasms of any muscle or group of muscles in the body. Dystonia is often an OFF symptom that occurs early in the morning or late at night when your medication levels are low. Gait Freezing: your gait is the way you walk. Gait freezing is when your feet plant or stick to the ground, and will not move. Gait freezing can happen any time, but is more common in tight spaces (like doorways or closets) and when trying to turn. Gait freezing is a concern as it can result in falls. Motor Symptoms: symptoms related to how well you move. The four cardinal motor symptoms are tremor, rigidity (stiffness), bradykinesia (slowness) and postural instability (gait and balance problems). Lastly, find resources in your community. Support groups are established in most communities for people with Parkinson’s and/or their family members. These groups can offer you opportunities to learn more about the disease, socialize and express your concerns and feelings with people who are more able to relate to what you are experiencing. If you are having difficulty finding a support group that meets your needs, consider starting your own. Organizations like the American Parkinson Disease Association (APDA) can help you find or start a group near you. Non-Motor Symptoms: symptoms associated with the disease, but not movement related. May include depression, sleep problems, blood pressure fluctuations, skin changes, constipation and cognitive deficits. Dopamine: the main neurotransmitter, or chemical in the brain, that is affected in Parkinson’s disease. Medications Parkinson’s is most often treated with polypharmacy, using small doses of multiple medications to try to get benefit without causing side effects. Be prepared with at least a general understanding of the medications used in Parkinson’s when you have discussions with your doctor. Some of the most common medications used to treat GET EDUCATED Take the time to learn about your diagnosis, as knowledge will make you feel more empowered and less anxious about the future. 2 www.parkinsonsprogress.org Diagnosed with Parkinson’s continued from page 2 The Rezak Report continued from page 1 Parkinson’s include Carbidopa-Levodopa (Sinemet®, Sinemet CR®, Stalevo®), Azilect®, Amantadine, COMTAN® and the Dopamine Agonists (Requip®, Mirapex®, Neupro®, Apokyn®). All of these medications have their own mechanism of action and potential side effects. When you understand what you are taking, why you are taking it, how it works, how it should be taken, and what will happen if you don’t take it (or take too much), you will be more of an active participant in management of your symptoms. the same blood levels. Rytary™ has been shown to benefit both early PD symptoms and reduce OFF time in patients that are experiencing “wearing off” phenomenon. In moderate to advanced PD patients that were experiencing motor fluctuations, Rytary™ demonstrated about 2 hours per day of reduced OFF time, improved quality of life measures and patients rated themselves significantly more improved compared to taking the immediate release carbidopa/ levodopa formulation. Nevertheless, dyskinesias remained a problem. Another study looking at Rytary™ in more advanced fluctuating patients compared to those taking Stalevo® (carbidopa/ levodopa.entacapone) demonstrated about 1.5 hours of reduced OFF time and there was a reduction in dosing frequency from about 5.5 times per day to 3.5 times per day. In early Parkinson’s disease Rytary™ provided a clear symptomatic benefit. The higher the dose, the greater the improvement in motor symptoms and activity of daily living compared to placebo, but side effect frequency also increased as the doses were increased. It is expected that the dosing frequency should be three times per day for most early PD patients and may be reduced to around 2/3 of the dosing frequency in more advanced patients. Therapy Some symptoms, like speech and gait/balance, are not responsive to medications but are responsive to rehab therapies. Speech Therapy: Lee Silverman Voice Treatment (LSVT Loud) was developed specifically for Parkinson’s patients and is the best treatment for hypophonia, or softer voice. LSVT takes commitment, as the best results come from practicing what is learned every day. Speech therapists can also be a resource for swallowing difficulties and cognitive decline in the later stages of PD. Physical Therapy: LSVT BIG therapy was later developed to help Parkinson’s patients learn how to enlarge their movements, and is the best intervention for gait freezing and balance problems. Physical Therapists can also come in to your home to help make adaptations to your environment to help reduce falls. Occupational Therapy: Occupational Therapists (OTs) can assist you if you are having trouble with activities of daily living, like handwriting, using utensils or getting dressed. OTs can also provided tools like grab bars that can help make you safer at home. Several important questions remain with regard to Rytary™ in early PD. First, whether Rytary™ turns out to be more effective than immediate release carbidopa/levodopa and has fewer side effects in early PD awaits further studies. Furthermore, the key question of whether there is a reduced likelihood of developing motor complications from using a more continuously released formulation of carbidopa / levodopa in early PD has not yet been evaluated. The answers to these questions will come from direct head to head comparison studies. Progression Parkinson’s is a progressive disorder, but the progression is slow and often times your symptoms will plateau for many years. It’s important to know that no two people with Parkinson’s will progress at the same rate, so try to avoid comparing yourself to others. Surgery Deep Brain Stimulation surgery is the implantation of a neurostimulator system to help control the symptoms of Parkinson’s disease more smoothly and consistently than medications can. Ask questions about Deep Brain Stimulation as a surgical option for treatment, even if you are not currently a candidate for the procedure. We look forward to finally having an oral long acting carbidopa/levodopa formulation that has the potential to allow use earlier in the course of PD if it is required. It is the short half-life of immediate release carbidopa/ levodopa (1.5 hours) that is believed to result in the relatively rapid development of motor fluctuations and dyskinesias. Thus Rytary™, with its more continuous distribution (half life of about 4 hours), may have the capacity to reduce the probability for the future development of motor complications in PD. GET MOVING Exercise is the most important thing you can do for yourself after you receive the diagnosis. Recent studies have confirmed that exercise can establish new pathways in your brain that bypass the damaged areas and therefore slow the progression The Rezak Report continued on page 4 Diagnosed with Parkinson’s continued on page 7 3 www.parkinsonsprogress.org T E L L M E HO W YO U R E ALLY FE E L BY T OBY KAT Z I listened to everything that Dr. Rezak had to say, I came to our meetings with lists and lists of questions. I needed to feel in control of what was going to happen to me. Things began to move quickly. A surgical spot had opened up in two weeks, I had to make a decision. Hi, my name is Toby Katz. I am 59 years old and I am a Parkinson’s patient. “ TRUST “ It has been quite a while since my last column. A lot has happened in my life during the past year and “TRUST” is one of the most important and challenging concepts that I have had to deal with. After weighing all of the pros and cons, I realized that I had to “TRUST” someone. Dr. Rezak answered all of my questions and he allayed my fears as much as possible. The odds were in my favor. I was otherwise young and healthy, I had an amazing family support system, in Dr. Rezak’s words “a perfect candidate”. No surgery comes without risks, and brain surgery goes to the essence of who we are, our spirit, our soul. Would I wake up and still be me? As Parkinson’s patients, we all know what it feels like to relinquish some of our power and to be able to “TRUST” someone else. Whether it is a caregiver, a loved one, or a doctor, at some point we have to “TRUST” another person to do what is best for us. I quickly went through all of the neurological and physical pretesting. I met with the neurosurgeon and the rest of the surgical team. I was ready and I was petrified, but I finally decided that the only choice I had was to “TRUST”. This can be a scary proposition. For most of us, the challenge of having Parkinson’s requires us to gather all of our strength to lead as normal a life as possible. Unfortunately, at some point, we need someone else to help us along that path. “TRUST” that Dr. Rezak would do everything in his power to keep me safe and pain free. “TRUST”: the firm belief in the reality, truth, ability or strength of. “TRUST” that he would only surround himself with the best medical team possible. “TRUST” that his nurse, Alison, would only leave my side to give my family updates. “TRUST” that when it was all over not only would I still be me, but a better me. This past year I hit a wall. My Parkinson’s medications were no longer giving me the relief that I needed. I was also having a difficult time tolerating the medications. Thus came “the conversation”. It was time to consider DBS (Deep Brain Stimulation). I never imagined that I would get to this point, especially at such a young age. They didn’t let me down. I am 3 months post surgery and I am doing extremely well. I believe that I have been given a gift. When people asked me before the surgery if I was excited, I would respond that “I was hopeful”. My results have far exceeded my hopes. My gratitude is boundless. Dr. Rezak never pushed the idea of DBS on me. He waited until I came to him. It was time. I remember him telling me...”Toby, I have nothing left in my bag of tricks that will help your symptoms”. I think that at that point I went into shock-I was not prepared for this. I had been doing so well on my medications, but as I learned, every case is different and the path of this disease is filled with ups and downs. Unfortunately, I had run out of “ups”. This is a long road that I am on and I must have realistic expectations, but that doesn’t mean that you ever give up. You just learn how to “TRUST”. Hope to hear from you soon, Toby [email protected] The Rezak Report continued from page 3 For now, delaying levodopa use until it is needed, by using other medications first (Azilect®, Neupro®, Mirapex®, Requip® etc.) remains the overall guiding principle in our effort to forestall motor complications. If and when more symptomatic benefit is needed, a longer acting levodopa formulation such as Rytary™ would be desirable. In moderate to advanced PD, reduced dosing frequency and more ON time is a highly desirable benefit of Rytary™, but dyskinesias will probably remain somewhat problematic. The timing of the release of Rytary™ onto the market is unclear as the FDA is still awaiting response to some questions. 4 www.parkinsonsprogress.org A T O U R N A ME NT TO C HAMP IO N BY E L I Z A BET H BE R RY On June 28, 2012, PDRS held its third annual Fight for the Cure fundraiser and Flip Cup Tournament. The event kicked-off with an outstanding raffle where guests walked away with bigticket items including an Apple IPad, a vacation package, and tickets to all of Chicago’s major sporting events. Other prizes were claimed throughout the night as guests enjoyed complementary cocktails and hors d’oeuvres generously provided by the night’s host, Theory Bar and Grill. Without a doubt the highlight of the evening was the Flip Cup Tournament, a tradition started in 2011 which met with tremendous success. Stacey Cohen calling raffle winners The host committee was pleased to see many new faces in attendance at this year’s event and happy to welcome back our past supporters. What started out as a modest cocktail party just three years ago, has blossomed into a truly special night. This year’s event raised a grand total of $18,325 and undoubtedly helped to raise awareness with over 150 people in attendance. The host committee extends its warmest gratitude to all those who attended the event and to those who could not be there but whose kind donations added to the evening’s success. We are Happy Flip Cup Winners especially grateful to Cadence Health for the generous support it provided in organizing our event. We look forward to connecting with future committee members, friends, and donors as we continue to fight for a cure for all those who suffer from Parkinson’s disease. Our event this year will take place on Thursday, June 27th so please save the date! Deepest thanks go to the following: Presenting Sponsor-Mr. David Reich & MSRF, Inc., Event Sponsors-Mr. Joel Sorinsky & Theory, Stacey Cohen & Family, Pediatric Neuropsychology Diagnostic Center, Peroni Italy and TEVA Neuroscience Supporting SponsorThe Giannoulias Family Raffle Prize Donors-AKIN, Ms. Alissa Nowinski, Benefit Boutique, The Berman Family, The Blues Jean Bar, Brookfield Zoo, Bull & Bear, Charles Ifergan, Chen’s (Koi), Chicago Bears, Chicago Blackhawks, Chicago Bulls, Chicago White Sox, Chicago Wolves, The Chopping Block, ComedySportz Theater, Dana Hotel & Spa, Paulson Photography, George the Salon, Gibson’s Restaurant, Half Acre Beer Company, Halo Salon for Men, Haymarket Pub & Brewery, Hub 51, John Albens & Fibre Craft, Ms. Kate Malham, The Laugh Factory, Legacy Vacation Club, Lettuce Entertain You, Lou Malnati’s, Material Possessions, Merkle’s Bar & Grill, Music Box Theater, Nate Berkus Associates, Noel Rose Hair Studio, Paris Club, Peggy Notebaert Nature Museum, Picture Us Galleries, Position-Tech, Public House, Qdoba Mexican Grill, Real Ryder Revolution, RPM Italian, Sebastian Grey Clothier, Mr. Scott Knapp, Six Flags Great America, Sluggers, Sprinkle’s Cupcakes, Stacey Cohen Interiors, Treasure Island Foods, Turano Baking Co., Uncle Julio’s, Urban Oasis, VeeV, Vera, Victory Garden’s Theater, Wilson Dow Group, Wines for Humanity and Zipcar. 20 12 GAME D AY For the seventh straight year Sue Apter and Susan Wellek chaired a very successful PDRS Game Day on Oct. 12 at Northmoor Country Club in Highland Park, thanks to the sponsorship of Jan Ratliff, country club member. 220 attendees were able to enjoy a lovely afternoon of lunch, camaraderie and participation in games of Mah Jong, Canasta, Social Bridge and Sanctioned Duplicate Bridge. After 7 years as a successful team, Sue Apter and Susan Wellek are turning over the chairmanship of this event to another very competent team of PDRS board members, namely Linda Schwartz, Juliet Plonsker and Jillian Schwartz. Sue and Susan will remain on the committee as mentor-advisors and will be actively involved in the planning of the event. This year Game Day will take place on Wednesday, October 2nd so please save the date! Cadence Health Foundation and TEVA Pharmaceuticals underwrote the event enabling all monies to go directly to Parkinson’s research. Local merchants and health care providers donated all raffle prizes and the welcome gifts were donated, as always, by Shelly’s Hallmark store in Northbrook. Due to the generosity of these institutions and individuals we were able to raise over $41,000 for our cause. Co-Chairs Sue Apter (L) and Susan Wellek pass the torch 5 www.parkinsonsprogress.org “ PA R F O R PAR K INSO N’S” E VE NT B Y T H E H ON . E MI L I O S A N T I On July 30, 2012, Northmoor Country Club, in Highland Park, was the setting for the PDRS annual golf outing/fundraiser. It can be said with certainty that this venue provided those participating with the most positively memorable experience in the 10 year history of the event. In spite of drought like weather conditions, the course was beautifully manicured and provided a fair and enjoyable test for all participants. The staff, including PGA golf pro Adam Rosuck and General Manager Jim Cardamone structured and oversaw the event, leaving very little for our staff to do. Also, due to our recent affiliation with Cadence Health, who graciously agreed to underwrite the affair, PDRS was able to net a sizeable profit. Last, but certainly not least, I would personally like to thank all of our participants. Each year you are asked to reach in your pockets. Although, as a committee we feel that the event is always presented in a first class fashion, without your continuing commitment and participation we could never achieve the level of success attained over the years. The Outing this year is scheduled for Monday, July 29th, 2013. We would remind those of you who played last year that Northmoor has 27 holes available to us. It would be wonderful to necessitate use of all of them! I’m certain each past participant has a friend or two who would love to spend a Monday afternoon basking in the beauty and warmth of these premises. See you all then! I offer special thanks to Northmoor member and good friend Bud Greene for supporting our cause by providing his sponsorship. D E E P B R A I N S T I MULATIO N: INSIGHTS FRO M A N E U R O P HYSIO LO GIST BY MA R K N OLT, PH . D . Deep brain stimulation (DBS) is a contemporary treatment for patients with Parkinson’s disease and other movement disorders. This form of therapy may be recommended to patients whose symptoms are no longer, or never were, adequately controlled with standard medical therapy. DBS involves stimulation through an electrode (essentially a thin wire) that is placed into a very specific region in the brain. The electrode is placed during a surgical procedure in which numerous experts use a variety of techniques to determine the best location for the individual patient. One key component of the procedure that may be mysterious to many patients is the neurophysiological recordings in the operating room. Although these recordings must be performed while the patient is awake, the recordings are completely painless and yield some of the most important information used to place the DBS electrode. how these recordings are done and what they tell us. I hope that after reading more about them below, I will have been able to “demystify” them for you! Before these recordings occur, and even prior to the patient entering the operating room, a CT scan and MRI scan of the patient’s brain are examined by the team to visualize the area of interest and define the optimal path to the target. For a patient with Parkinson’s disease, the target structure in the brain is almost always the subthalamic nucleus (STN). Although the planning can be done with a high degree of accuracy by examining the scans, at CDH we use neurophysiological recordings during the surgical procedure to refine the placement of the electrode. We believe this is extremely important, as the STN is very small and cannot always be seen unequivocally on the radiological images. Neurophysiological recordings (also called microelectrode recordings) are done using very thin electrodes, called microelectrodes, which are thinner than the DBS electrode. They are made primarily of insulated tungsten, a very hard metal that is commonly used in light bulb filaments. Although tungsten is considered to be one of the hardest metals, these electrodes are very fragile As a neurophysiologist at CDH, I work with Dr. Rezak and Dr. Masnyk during deep brain stimulation (DBS) surgeries, performing these recordings. I have done these recordings for over 350 DBS electrode placements at over 25 centers across the country. Most people do not have an understanding for Deep Brain Stimulation continued on page 8 6 www.parkinsonsprogress.org Diagnosed with Parkinson’s continued from page 3 A NUTRITIONIST’S PERSPECTIVE of the disease. Exercise helps strengthen your body so that it can fight back against whatever the Parkinson’s throws your way. People who exercise regularly are more able to manage the day to day symptoms than those who do not. Other benefits of exercise include: decreased rigidity and joint stiffness, improved endurance, improved circulation, better digestion, bowel function and sleep, enhanced mood and general well-being. BY MA R C Y KI R S H EN BA U M, MS , C C N What you put in your body directly affects how you feel. Nothing is neutral; the right foods promote vitality, energy and wellness. The wrong foods promote inflammation, infection and chronic disease. Our bodies are fine tuned machines that require the proper fuel for synergy and balance. A health condition such as Parkinson’s disease throws you out of balance by forcing your body to work even harder to finds its equilibrium. Numerous studies have been conducted on the best type of exercise, but overall your goal should be to work up to 30 minutes of sustained aerobic exercise at least 3 times a week. Try to make the activities you choose enjoyable so you look forward to doing them. Aerobic Exercise Aerobic exercise, also known as “cardio”, gets your heart rate up, your blood pumping and more oxygen to your brain. It also stimulates your lymphatic system and makes you sweat out toxins. Examples include treadmill, elliptical machine, rowing machine, bicycle (stationary bike if you have balance problems) speed walking and running. With the multifaceted pathogenesis of PD and its irreversible damage, the nutritional recommendations, based on preliminary scientific evidence, may slow the progression of the disease and provide some symptomatic relief. To reduce the risk and progression of PD, modifiable lifestyle factors that decrease inflammation and enhance antioxidant protection are necessary to consider. Dietary patterns that include high fruit and vegetable, nuts and seeds, legumes, and fish (wild caught) with low saturated animal fat intake are inversely associated with the risk of PD. Begin by evaluating the foods you eat and eliminating nutrient-dead processed foods and replacing them with whole, nutrient-dense foods. Incorporating any lifestyle changes take time, so begin slowly and notice how your body responds. After you have built up some stamina, challenge yourself with exercises that engage both your mind and your body. Dancing Studies have shown ballroom dancing to be one of the best forms of exercise for PD patients for countless reasons. It forces you to engage both your body and your brain when learning the steps and keeping time. It is often a partner exercise, so you get the benefit of learning to be coordinated with another person. Most people find the music to be appealing as well, often bringing back good memories from years past. Some say their symptoms “melt away” once they hit the dance floor. Have no fear if you have two left feet, any type of dancing will do. Put on your favorite music, even if you are alone in your living room, and cut a rug for a half hour every day. Dancing also does wonders for your mood. If you think about it, it’s rare to see someone dancing who is not smiling. Marcy offers a wealth of holistic nutrition knowledge to her clients. She inspires her clients to make practical and sustainable changes that work for them by educating and promoting a healthy lifestyle. To learn more about how you can incorporate sound nutrition into your life, contact Marcy at [email protected]; 847-987-1128. Boxing Challenge yourself further by adding boxing to your exercise regimen. Boxing is a high energy work-out and like dancing it forces you to use your mind and body. Boxing also offers a healthy alternative to lashing out when you feel frustrated or overwhelmed by the changes in your health. For more information, see rocksteadyboxing.org. SAVE THESE DATES! Fight for the Cure/Flip Cup Tournament Thursday, June 27, 2013 “Par for Parkinson’s” Golf Outing Monday, July 29, 2013 In addition to aerobic exercise, try weight bearing and balance focused activities like yoga and tai chi. Consider exercise as important as your medications and commit to an active life. Game Day Wednesday, October 2, 2013 7 www.parkinsonsprogress.org Deep Brain Stimulation continued from page 6 with a tremor, we can usually detect cells that are signaling at the same frequency as the tremor. since they are extremely thin. In fact, at the tip, they are thinner than a human hair! These electrodes are mounted to a device called a microdrive. This microdrive is manipulated by a small motor that is connected to a system positioned near the patient in the operating room. This system enables me to move the microelectrodes and record the activity of the cells in the patient’s brain. The system is designed such that the microelectrodes can be moved at very small steps (approximately 10µM at a time). Each area of the brain has a specific pattern of communication. By observing these patterns as I move the microelectrodes towards the STN using the microdrive, I can determine exactly where the electrodes are in the brain. This information, combined with the radiological scans, allows the team to place the DBS electrode in the area of the brain that will be most beneficial to the patient. So, what exactly am I recording? These neurophysiological recordings can be simply thought of as recordings of the communication between cells, or the “language” of cells. During the recordings we are actually observing the communication of all of the cells that are close to the tip of the microelectrode. Of course there are whole textbooks written on how cells communicate with one another, but at the most basic level of the cell, it involves the movement of numerous charged particles into and out of the cell. This movement of charged particles is amplified thousands of times buy the recording equipment to achieve a level that we can see AND hear. Many patients find it fascinating to be listening to their own brain! To the untrained ear, the recordings resemble “rain on a tin roof” or “white noise”. However, in patients I hope this has helped you to have a better idea of what neurophysiological recordings entail, and how they are used during the placement of a DBS electrode. If you happen to see me in the clinic and have questions, please don’t hesitate to ask! Dr. Mark Nolt is a neurophysiologist and researcher in the Movement Disorders Center at Central DuPage Hospital. MI TZVAH P R O J E C T T O H ELP FIND PAR K INSO N’S D ISE ASE CU RE BY D A N I E L BEN - I S V Y Last February I became a Bar Mitzvah. A Bar Mitzvah is a traditional ceremony in which Jewish children become adults in the Jewish community. A Jewish child becomes a Bar Mitzvah at the age of thirteen. He leads a service in his temple and reads from the Torah. Only adults can read from the Torah, so when a Jewish child reads from the Torah, it signifies that he has become an adult in the Jewish community. A Jewish child also often completes a mitzvah project to become a Bar Mitzvah. A mitzvah project is any project the child performs to help in their community. Some common projects are raising money for a charity and volunteering. For my mitzvah project I ran thirteen 5K races to raise money for the Parkinson’s Disease Research Society. I picked this project because my grandpa has Parkinson’s disease. One of his doctors is Dr. Rezak. Daniel Ben-Isvy racing for the cure For each race I ran I asked a different group of people to donate money to my cause. I sent each of them a letter asking them to donate money and explaining what my mitzvah project was. I then sent the money I earned from that race to the Parkinson’s Disease Research Society. Once I had collected the money I raised for the race, I sent thank you letters to everyone who donated. Following all thirteen races I raised roughly $8,800 for the Parkinson’s Disease Research Society. After observing my grandpa for several years, I have realized how important it is to find a cure for Parkinson’s disease. I hope that my small contribution will help find a cure for Parkinson’s disease. 8 www.parkinsonsprogress.org T R U K E N B R O D FAMILY “E NGLISH C HANNE L” S WI M F O R PAR K INSO N’S R E SE AR C H B Y BR I T T T R U KE N BR OD During the summer of 2011, a former colleague of mine, Doug McConnell, swam the 20 mile plus English Channel to raise money and awareness for ALS (Lou Gehrig’s Disease) research. Doug is a former college swimmer whose father passed away from ALS. After 14 hours in cold, choppy water, Doug completed the Channel and raised a significant amount of money and attention for ALS research. In June of 2012, Caroline (age 11), William (9), Charlie (6) and Allie (5) and I (age not disclosed) set a goal to swim 80 total miles and raise as much as we could for the Parkinson Disease Research Society – my dad’s choice of charity to support. We reached out to friends and family, and received support from 30 sponsors. We swam hard throughout the summer and kept track of our progress on a large chart outside of the pool. It was highly gratifying to see the kids work so hard to accomplish a goal. On several occasions, they would swim 1 to 2 miles a day in order to stay on pace! In August 2012, we completed the challenge! Our team swam 80 miles and raised almost $4,000 for Parkinson’s Disease Research Society with the generous support of our sponsors. Allie, Caroline, William and Charlie with their swim trophies My father, Bill Trukenbrod, was diagnosed with Parkinson’s disease over a decade ago. Although we have supported a number of Parkinson’s related charities financially over the years, I wanted to do something more personal and tangible. Doug McConnell’s English Channel Swim gave me an idea! Over the past several summers, my four children and I have participated in a summer long “English Channel” swim challenge at our local pool. The basic concept is to complete the full 20 mile distance of the Channel by swimming pool laps throughout the summer. My wife, Allison, and I thought that adding a charity goal to the swim would serve to motivate our kids and teach them a valuable lesson about helping others. Although we feel both proud and motivated by accomplishing this goal, our strongest source of inspiration is my Dad! His strength of spirit, positive attitude and will to continue his active lifestyle is truly impressive. Dad has a tremendously supportive group of friends, family and doctors that prove the substantial benefit of battling life’s challenges with a strong team behind you! 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A-2 Winfield, IL 60190 Phone: (630) 933-4384 Email: [email protected] Officers Carol A. Santi, President Alex Katz, Executive Vice President Rachel Katz/Charles Lutz, Co- Vice Presidents Mitchell King, Treasurer Cacilia Reich Masover, Secretary Board Members David Apter Sue Apter Dani Berman Elliot Berman Elizabeth Berry Ronald Butler Alan Garland Brett Katz Adam A. Koss Daniel Lucca Jocelyn N. Lutz Lizzie McAdams Skippy Mesirow Howard Naft Christina Nowinski Parkinson’s Disease Research Society Board of Directors Jack B. Orlov Juliet Plonsker Steven Plonsker Michelle Rajfer Ron Sackheim Hon. Emilio Santi, retired Jillian L. Schwartz Linda S. Schwartz Lauren Silverman Marilee J. Upton Spatz Richard L. Wellek Susan P. Wellek Alison N. Yastrow Medical Advisory Board Michael Rezak, M.D., Ph.D., Medical Director Stephen G. Waxman, M.D., Ph.D. PA R K I N S O N ’ S D I S E A S E R E S E A R C H S O C I E T Y Facing the challenge...Finding the cure Statements or expressions of opinion appearing herein are those of the authors and not necessarily those of the PDRS and should not be relied upon as a substitute for seeking individual medical advice. Designed and printed by Source4, 773-247-4141 • www.source4.com Parkinson’s Disease Research Society Central DuPage Hospital 0N150 Winfield Rd., Suite A-2 Winfield, IL 60190 (630) 933-4384