NPFWNY Newsletter Winter 2013 - National Parkinson Foundation
Transcription
NPFWNY Newsletter Winter 2013 - National Parkinson Foundation
Our Mission is to improve the quality of life for the Parkinson’s community throughout Western New York. NPFWNY Newsletter January February March 2013 Edition 3 vol. 1 Theracycle Aerobic Exerciser Article Headline Goes Here Now at Local JCC TABLE OF CONTENTS Theracycle Study Pg. 1 Evalyn’s Departure Pg. 1 Theracycle/JCC Pg. 2 “Evalyn Flew South” Pg. 3 “Weekend Sloth?” Pg. 4 Chapter Grant Award Pg. 5 New Board Posts Pg. 5 Valentine’s Dinner/Dance Pg. 6 O Our Mission is to ! Our Mission is to improve the quality of quality of lifeimprove for thetheParkinson’s life for the Parkinson’s community throughout community throughout Western New York. Western New York. Machine proven to help with symptoms of Parkinson’s Disease It has long been understood that exercise is a key factor inCreekside battling Banquet the effects Parkinson’sThe corks will pop at 6:30 and eld at the Hall inofCheektowaga. Disease. Now, a form cycling haswill proven bearray of wines from the finest festivities will run untilof9:30. There be a to vast highly effective addressing number of be available. Music, delectable wineries, and broadinselection of craftabeers will also symptoms. A research study by Jay Alberts, Ph.D. eats and great camaraderie will round out the night. A number of exquisite items will be on hand for gift and has silentshown auctions. It ishighdefinitely and event that you don’t at the Cleveland Clinic that want to miss. – and that you won’t. cadence cycling onweahope tandem bike, or “forced exercise,” helped reduce rigidity, bradykinesia Tickets for the Wine Tasting are $40 and (slow movement) and lack ofaredexterity. available by calling (716) 859-3342 or Unfortunately, a tandem bike requires that there the through website at always be a partner for these exercise sessions. Parkinsonswny.com. They can also be The employment of a Theracycle, apurchased motorized from members of the PAWNY cycling machine, eliminated for theboard. need We for hope a to see you there! part partner while providing similar results. As a Parkinson's Disease therapy treatment, Theracycle increases aerobic fitness and can provide high-cadence cycling motion in a way that improves mobility for Parkinson’s Disease patients. Second Article Headline Goes Here Rick Zakalik, Executive Director of the Jewish Community Center (con’t. pg. 2) Atelli amputat verecundus concubine, quod Octavius iocari agricolae, et Aquae Sulis circumgrediet catelli, iam umbraculi fermentet tremulus zothecas, semper ossifragi comiter insectat fiducias. Plane quinquennalis cathedras frugaliter miscere incredibiliter gulosus quadrupei. Perspicax ossifragi spinosus iocari concubine. Augustus miscere tremulus zothecas. Our Right-hand Woman Left Perspicax catelli amputat adlaudabilis saburre, et pretosius rures circumgrediet utilitas agricolae, etiam adfabilisOsaburre fortiter adquireret adlaudabilis fiducias, ur friend, cohort and invaluable secretary quamquam umbraculi miscere catelli. Gulosus suis senesceret lascivius catelli. has decided to depart Western New York for climes. Evalyn Katzfiducias, has been asset Umbraculi insectat Aquae Sulis.warmer Cathedras spinosus miscere ut an agricolae to NPFWNY and the whole Western New York celeriter iocari verecundus matrimonii. Medusa pessimus frugaliter praemuniet Parkinson’s community for years. chirographi. Suis conubium santet rures. Matrimonii circumgrediet gulosus Her retirement became official at fiducias the end of fiducias. Augustus amputat vix fragilis chirographi, etiam saetosus plane December, has moved with et her fortiter adquireret quinquennalis concubine. and Ruresshe lucide imputat agricolae, husband matrimonii insectat satis saetosus oratori.to the sunny state of Florida. Please read the tribute to Evalyn that was written by our past President, Pat Weigel. The piece can be found on page 3. Best of luck, Evalyn. We miss you already! of Greater Buffalo, reached out to a Board member of our NPF Chapter regarding the desire to help people with PD and others with neuromotor disorders. On the basis of a request by one of their Center members, a PD patient, both the tandem bike and the Theracycle were researched. Since the tandem bike requires twoperson pedaling, this was not a practical option. The best alternative proved to be the Theracycle. PD patient Steve Bernstein working with John Markey, JCC Personal Trainer, and Connie Brignole-Silvashy, PT, GCS, Allied Team Trained Physical Therapist On the basis of this information, the NPFWNY Board approved providing $1,500 towards the purchase of a Theracycle. The joint venture between the Jewish Center of Greater Buffalo and NPFWNY has enabled the Theracycle to be available to PD patients and others with neuromotor impairments. It is located at the Jewish Community Center in Getzville, NY. The Center is in the Benderson Building, 2640 North Forest Road. ! National Parkinson Foundation of WNY 5140 Main Street – Suite 303-154 Williamsville, NY 14221 (716) 218-1027 www.NPFWNY.com! You do not have to be a member of the Center to use the Theracycle. It is available for everyone to use. Some insurance plans that have a health club benefit will even enable you to use the Center for free. Because there is only one unit for everyone to use, you will be required to make an appointment for time on the Theracycle. Just call 716 688-4114 ext. 367 and ask for Ann Vorburger. And, while you’re at the Center, why not check out their many other exercise opportunities. The weight room at the JCC Our Board remains committed to using funds that we have raised to benefit our local PD community. We appreciate your support so that we may continue to provide educational and social activities along with exercise opportunities in the WNY area. We continue to run a weekly dance program and a twice-weekly exercise program, all for free. For more information about these programs, please call 716 218-1028 and ask for Pat Weigel. The study mentioned in this article was authored by Jay Alberts, Ph.D. It is titled “The Cleveland Clinic Forced Exercise with Theracycle Parkinson’s Disease Bikes – A Cleveland Clinic Research Study” and was published on August 12, 2010. The complete study can be found online. Evalyn Flew South By: Pat Weigel (This is a tribute to our recently retired Board member, Evalyn Katz. Evalyn has been an invaluable asset to the University at Buffalo Comprehensive Movement Disorders Center. For much of that time, she was a critical component of NPFWNY, facilitating Support Groups; helping to organize and present events, fundraisers and the annual Symposium; and acting as our secretary. The immensity of her contributions is difficult to measure, but it is a certainty that our organization has become well-founded and successful largely because of her presence.) It’s funny when you involuntarily let your instincts take over when hiring someone. I had the opportunity to be part of the interview process when we were looking to hire a Social Worker to care for our Parkinson’s (PD) patients and families. As I reflect back to that day, Evalyn brought her enthusiasm, energy and compassion to the table. Over the last 5 years, she has shown that same passion for her work, her life and for the patients and family members she has cared for. There were times when the challenges faced by our PD patient population were most difficult to manage. Even an energetic person can get worn out trying to sort out serious family issues. Other times, when patients experienced improvement in their health, for example a new medication is tried or perhaps after DBS surgery, we would all get to celebrate. Evalyn was not afraid to work hard; she was always eager to accept any new project or plan. She took the challenge head-on and found a way to make things work. Counseling her patients one-on-one left them with a sense of well-being. She was not afraid to be honest, especially when she believed it would help her patient. Evalyn was not afraid to play hard as well. It was a regular occurrence to sit across the lunch table from her as she described her 100 mile bike ride the day before. Her love of exercise kept her bouncing around our office each day. It’s pretty quiet around here without her, and we will truly miss teasing her about her New York accent. Her sense of humor helped her deal with many sad moments we have had with our PD patients. I remember, at the beginning of her job interview, she explained that her name was pronounced “Eeva-lyn,” and that sometimes her patients called her “Evil-lyn.” She always made us laugh. But the truth is, she was far from “evil.” She is an angel who has helped so many patients feel better. Enjoy your sunshine and remember to visit!! On Retirement: A message from Evalyn These past five years, working at the Comprehensive Movement Disorders Clinic and with the Parkinson’s community, have been a wonderful experience. I’ve met so many dedicated, caring people. I will cherish all my memories and the people I have met along the way. This is a writing that I use many times to get me through endings and to enable me to move on to new experiences. People come into your life for a reason, a season or a lifetime. When you know which one it is, you will know what to do for that person. When someone is in your life for a REASON, it is usually to meet a need you have expressed. They have come to assist you through a difficulty, to provide you with guidance and support, to aid you physically, emotionally or spiritually. They may seem like a godsend and they are. They are there for the reason you need them to be. Then, without any wrongdoing on your part, or at an inconvenient time, this person will say or do something to bring the relationship to an end. Sometimes they die. Sometimes they walk away. Sometimes they act up and force you to take a stand. What we must realize is that our need has been met, our desire fulfilled, their work is done. The prayer you sent up has been answered, and now it is time to move on. Some people come into your life for a SEASON, because your turn has come to share, grow or learn. They bring you an experience of peace or make you laugh. They may teach you something you have never done. They usually give you an unbelievable amount of joy. Believe it, it is real. But only for a season. LIFETIME relationships teach you lifetime lessons, things you must build upon in order to have a solid emotional foundation. Your job is to accept the lesson, love the person, and put what you have learned to use in all other relationships and areas of your life. It is said that love is blind but friendship is clairvoyant. Thank you for being a part of my life, whether you were a reason, a season or a lifetime. Weekend Sloth? A week in life of a PD patient By:the Chris Jamele By: David Wolf This past weekend was one of those that I dub a recovery weekend. By the time Friday night came by I was beat, physically and emotionally. I mean, I got home at 5:30 pm, kissed the wife, went upstairs and fell asleep. She woke me up for dinner 2 hours later, but the damage was done. Sleep was going to be a problem. This is one of those sneaky little problems no one takes seriously. You nod in the right places when the doctor tells you about a strict regimen of medications and that varying from the administration times will do bad things to your internal clocks. Yes, clocks, not clock. There are body cycles, med cycles, Parkinson cycles, and, of course, sleep cycles. Messing with one messes with all. I hope I can capture a typical example of such a week at my house. Taking dopamine 4 times a day literally has its ups and downs, splitting a day into 16 waking hours and 8 sleep hours that need to coincide with the Ons and Offs associated with the body's expected dopamine intakes. My medicinal clock then breaks down into 7:00 am, 12:00 pm, 5:00 pm and 10:00 pm. Note that these are 5 hour intervals that my body has "gotten used to" seeing. If everything goes according to this schedule, I can almost expect that an Off will occur about 1/2 an hour before each medication intake and the corresponding On will occur 1/2 hour after the dose is taken. That leaves me with On periods from 8:30 am until 11:30 am, 12:30 pm until 4:30 pm, and 5:30 pm until 9:30 pm, or 12 hours On during my "perfect" 16 hour weekday. This never actually happens. So, let's add some reality to this and screw it up a little bit by staying up until 11:00 pm. All of a sudden, my night meds (some of which are supposed to keep me asleep) don't wear off completely by 7:00 am and I miss the 8-hour sleep I promised my body by an hour, so I am groggy. I take the 7:00 doses at 7:30 am because I spend too much time in the shower trying to get my muscles working smoothly under the hot water. Now everything is off. My Ons and Offs are no longer centered around my med intakes. I am sure to get an Off that stiffens my fingers and makes my forearms ache and makes buttoning dress shirts an involved project. The On comes on too late or too hard and I find my feet tap dancing under my desk, so I have trouble staying in my seat. Think of it as a horrible case of wiggly butt. By the end of the day, I feel like Offs and Ons are competing for attention, appearing indiscriminately and firing in all directions. So much for the weekdays of Monday through Thursday. There is always the weekend. Want to add some more reality into the mix: try my wife's kind intent to let me sleep in until 11:00 am on Saturday morning. (To get the real effect of this, you almost have to read this in double time with the 1812 Overture playing in the background with the volume at 11). I've now gotten 10 hours of sleep, so my mind is up and alert, but I've missed my 7:00 am doses by three hours so my body thinks it should be in the middle of an On, but there is no peak of dopamine in my system, so my brain is in Off. All of my extremities are buzzing, locked in position and beginning to ache. Meals and lack of food feelings fly by with abandon. I'm either not hungry or grouchy by turns, and my stomach wants nothing more to do with me. I try to calm the hurricane by taking my doses at shorter intervals, dividing the hours left in the day by the number of doses. Seven o’clock becomes 11:00, 12:00 becomes 3:00, 5:00 becomes 7:00, and 10:00, 10:00 remains 10:00, but now there is a show "we" really want to watch until 12:00. Forget trying to keep track of Ons, Offs, dyskinesia, bradykinesia; it’s a complete loss of the weekend. I'm done, I ache, I'm covered in sweat and there is a huge desire to pull the covers over my head and not come out until spring. Sure enough a friend will call and ask how I'm doing... I console myself that at least I get back on track at the end of the weekend, right? "But Honey, Dancing with the Stars is on until 11:00pm..." Well, there is always the workweek to get back on schedule. Health Training Made Possible With Chapter Grant Award By: Chris Jamele Board of Directors NPFWNY President Robert Plunkett, MD University at Buffalo Neurosurgery VP of Strategic Planning Gary Kurdziel, BA Northeast Manager Medtronic, MBA Candidate Treasurer Colleen Kelley, B.S. The Rocky Mountains near Denver, Colorado NPFWNY is thrilled to announce that our chapter has been awarded a grant through the national organization. A rigorous assessment process preceded the awarding of these grants, and NPFWNY became one of only seven chapters nationwide to be awarded this funding through the NPF Chapter Grant Fund. These grants are intended to extend the outreach of chapters into their respective communities, and they are funded by National Sponsorships for Moving Day. Our grant will be used to send a representative to an Allied Health Professional Training in Denver, Colorado. This three-and-a-half day training will bring the latest and most effective treatment practices back to Western New York to assist in treating PD patients throughout the community. Connie Jo Bish-Ziegelhofer will be representing our chapter in Denver. Bish-Ziegelhofer is a board certified physical therapist and has been practicing for more than twenty years. Her association with NPFWNY began approximately three years ago when a friend introduced her to our organization. Back then we were known as the Parkinson’s Association of WNY, or PAWNY. Bish-Ziegelhofer is now a member of our Program Committee, and she has been an important part of our care programs. Bish-Ziegelhofer has great ambitions for what she gains in Denver. “I hope to learn the latest recommendations for treatment for those with PD, particularly in physical therapy. I hope to learn how to better collaborate with other disciplines and colleagues in order to create a better experience for people with PD and caregivers. I also hope to network and make contacts with others across the country and world who are interested in and dedicated to treating people with PD and improving their quality of life.” The conference will be held in March. We are anxious to hear of what she learns. Accounts Payable, Hodgson Russ, LLP Assistant Treasurer Linda Mosher Retail Operations Analyst, First Niagara Bank Director of Patient Services Patricia Weigel, RN Clinical Nurse Coordinator, Deep Brain Stimulation, University at Buffalo Comprehensive Movement Disorders Center General Counsel/Legal Advisor Harry J. Forrest, Esq. Attorney with Gross, Shuman, Brizdle & Gilfillan, P.C Director of Programming Michele Youakim, Ph.D. Clinical Assistant Professor, Department of Rehabilitation Services, University at Buffalo Director of Fundraising Mark Burkard, RN University at Buffalo Neurosurgery Director of Communications Christopher Jamele Jamele Freelance Services Director of Volunteer/Outreach Services Susan Nichter, RPA-C Buffalo Medical Group Directors Victoria Glamuzina (Owner/Operator Georgetown Liquor), Tom O’Donnell (Co-Founder Parkinson’s Association of WNY), Lori Soos, MA, BSN, RN (Director of Health Services, Niagara University) Advisory Staff Kimberly Trinidad, MD (University at Buffalo Neurosurgery & Neurology Comprehensive Movement Disorders Sopecialist), Rick Lipka (President Emeritus, Parkinson’s Association of WNY), Xilui Li, MD (Dent Neurological Institute) Valentine’s Dinner Dance This annual event always proves to be one of the most highly anticipated and most cherished evenings of the year. If you’ve never attended – or thought that your symptoms would prevent you from attending, think again – this night is for you! It is the perfect night for everyone to enjoy. We welcome all patients, their families and their caregivers. We hope to see you there! Sunday February 10, 5:30 – 8:30 PM Ilio DiPaolo’s Banquet Room (3785 South Park Ave., Blasdell, 14219) $10 per person (Dinner, soft drinks, cash bar) Reservations must be made by 2/4/2013 Moving Day Proceeds Our kickoff Moving Day effort in 2012 was a great success. Our net revenues from the event totaled $59,779.37 We can’t thank all of you enough for all of your assistance and your participation! For 2013, our goal is to raise $85,000. We are always looking for sponsors and volunteers! Interested? Please contact us. [email protected] Call Betty Thurston 716 393-3134 LINKED TOGETHER NPFWNY Parkinson’s Association of WNY 5140 Main Street – Suite 303-154 Williamsville, NY 14221 www.npfwny.com (716) 218-1027 Place Stamp Here