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Cell LossIn Parkinson's disease (PD), the
principal symptoms of tremor, slowingof movement, muscle stiffness/rigidityand eventual impairment of balance arecorrelated with loss of cells in the sub-
stantia nigra (SN) in the brainstem.When PD patients show the first signsof slowness or tremor, they havealready lost 70% of the pigmentedneurons that make dopamine (DA) inthe SN. This leads to the neuro chem-ical DA deficiency which we treat withmedications such as L-Dopa. Thecause for cell death in the SN inpatients under the age of 50 is oftengenetic. In this younger age group,which accounts for only about 1% ofPD patients, gene coding for abnormalproteins such as synuclein are implicat-ed in causing the SN cells to die. Inthose patients developing PD after theage of 50, genetic factors are less signif-icant and environmental factors seemmore important. Head trauma, such asoccurring in contact sports like boxing,is implicated as a risk factor. PDoccurs 1.35 times more often in peoplewho have been knocked out once com-pared with those who have never beenknocked unconscious. The PD occur-rence jumps to 2.53 times more oftenin people who have had more frequentepisodes of being knocked out. Thisfactor clearly played a role in the devel-opment of Parkinson's disease inMuhammad Ali.
Pesticides have been implicated incausing PD since people with low lev-els of pesticide exposure have 1.13times the risk as compared to peoplewithout pesticide exposure. High levelsof pesticide exposure lead to 1.41 timesthe likelihood of developing the disease.
Recent work at the University ofKentucky in Lexington, revealedtrichloroethylene (TCE) exposure as a
risk factor for developing Parkinsonismand possibly a cause for PD. TCE isan industrial chemical used in manufac-turing. Unfortunately, it turns up indrinking water and soil due to runofffrom manufacturing sites where it isused. It is found in 60% of the super-fund priority sites identified by theEnvironmental Protection Agency. TheUniversity of Kentucky researchersexamined workers who had beenexposed to TCE and found symptomsand signs of PD such as slowing ofmovements (akinesia), stooped postureand balance problems. The symptomsseemed to be associated with the leveland duration of TCE exposure.Furthermore, they performed experi-ments on rats with TCE exposure andwere able to show that it inhibits thefunction of the mitochondria (energyorganelles) in the cells.
Mitochondrial dysfunction hasbeen implicated as a problem in PDand in fact Coenzyme Q10 (Co-Q10)is felt to have possible benefit in PDdue to its beneficial effect on mito-chondrial function. MPTP is a streetdrug used by addicts to get “high” andis a known cause for Parkinsonism/PDin humans. MPTP, like TCE, seems tobe toxic to the mitochondria especiallyin the SN cells in the brainstem. In ani-mal models, both agents cause neu-rodegeneration and a PD type picture.Further epidemiologic studies on TCEand PD are ongoing.Cell ProtectionA recent study supports the conceptthat neuro-inflammation in the SN isplaying a role in the death of cells in
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SUMMER 2008 NEWSLETTER
The American ParkinsonDisease Association
A Quarterly Newsletter by The American Parkinson Disease Association, Inc. ©2008
1 Cells and Parkinson’s Disease
2 President’s Message
2 Requip®XL™ Approval by FDA
3 10 Tips
4 Q&A
5 F.Y.I.
9 When and How to Share Your News
10 APDA Research Funding 2008-2009
12 Educational Material
INDEX
National HeadquartersParkinson Plaza135 Parkinson AvenueStaten Island, N.Y. [email protected]
National Young Onset CenterGlenbrook Hospital2100 Pfingsten Rd.Glenview, Ill. 600261-877-223-3801www.youngparkinsons.orgapda@youngparkinsons.org
West Coast Office:10850 Wilshire Blvd.Los Angeles, Calif. 900241-800-908-2732
Paul Maestrone, DVM,Director of Scientific and Medical Affairs, Editor
Joel GerstelExecutive Director
Vincent N. GattulloPresident
SUMMER 2008 APDA
cont. on page 8
Cells and Parkinson’s DiseaseBy Thomas G. Hammond, MD, Director, APDA I&R Center, Deerfield Beach, FL
APDA SUMMER 2008
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President’s Message
Dear Reader:
Research is the major segment of APDA's expenses. Our latest annual report shows that31 percent of our spending is for research with our Information & Referral Centers 23percent, and education 18 percent. As you will read in this issue, our contribution to sci-entific research for the 2008-2009 year is $3.7 million to 38 academic and medical cen-ters in the United States pursuing the most promising studies.
With federal funding for the National Institutes of Health (NIH) at an inade-quate 0.46 percent increase for this fiscal year, it is particularly significant that APDAresearch funding supports American research. Biomedical inflation is well above the
NIH increase, and without other means of support, necessary clinical and translational research for Parkinson's issuffering. A criterion for all APDA funding is that the research must be carried out in an institution in the UnitedStates.
We are also proud of our funding methodology, which supports advanced research at the most prestigiousinstitutions as well as providing opportunities for medical students to perform supervised laboratory or clinicalresearch. The reason for the former is self-evident; the latter is to stimulate a student's interest in pursuing a careerin research in the Parkinson's disease area.
Our most prestigious award, the George C. Cotizas, MD Fellowship, is also given to a young neurologist toencourage him/her in establishing a career in research, teaching and clinical services relevant to Parkinson's dis-ease. Six recipients have gone on to become chairmenof prominent academic departments of neurology, andfour presently serve as members of APDA ScientificAdvisory Committee, including it chairman, G.Frederic Wooten, MD, of the University of Virginia.
Last, but certainly not least, is our reputation forproviding the seed-money for young researchers togather the necessary data for greater funding from theNIH and other larger endowed organizations andinstitutions. Without the initial funds to begin astudy, the most promising research can go nowhereand the possible cause and cure never discovered or atleast be delayed for many years.
APDA's contribution to research is paramount inits effectiveness at all levels. Equally unparallel is itsservice of education and support to persons with PDand their caregivers, making it the largest grassrootsorganization serving the PD community in the UnitedStates.
If I sound proud, I am as should every person whohas ever contributed to this research tradition.
Sincerely,
Vincent N. Gattullo President
Requip®XL™ Approval by FDA
Requip®XL™ (ropinirole extended-release tablets) was recently approved in the U.S.for the treatment of idiopathic Parkinson's dis-ease. Requip XL is the first and only oral once-daily non-ergot dopamine agonist indicated fortreatment of Parkinson's disease.
Results from a pivotal efficacy and safetytrial showed that adding Requip XL to patients'existing levodopa (L-dopa) therapy reduced theamount of “off ” time experienced by patientswith Parkinson's disease by 2,1 hours per day onaverage.
Requip XL is an extended-release, oncedaily tablet formulation that uses a tri-layer for-mulation for continuous delivery of ropiniroleover 24 hours to provide smooth blood levels.
Side effects may include nausea, dizzi-ness, drowsiness or sleepiness, headache, and sud-den uncontrolled movements (dyskinesia).Increase or decrease in blood pressure and heartrate may occur. Hallucinations may also occurduring treatment. Patients should tell their doc-tor if they experience new or increased gambling,sexual, or other intense urges while takingRequip XL.
SUMMER 2008 APDA
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By David L. Cram, M.D.Clinical Professor Emeritus, University of California
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THINGS EVERYPERSON WITH PARKINSON
CAREGIVER SHOULD DO
The above article was adapted from the one published in the Fall 2007 newsletter of the APDA Deerfield Beach, FL I&R Center.
PERSONWITH PARKINSON'S
CAREGIVER OF A PERSONWITH PARKINSON'S
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Remember the importance of apositive attitude
Establish a good relationship with your doctor
Learn as much as you can about your disease
Maintain a daily exercise program
Take your medications on time exactly as prescribed
Don't let the disease controlyou-you are the master
Contribute some service to your community
Attend support groups meetings
Remain as independent as possible for as long asyou can
Live each day to the fullest and neverloose hope
Understand the importance of takingcare of yourself
Realize it is normal to experience a range of feelings such as anger, sadness, loneliness, guilt, resentment
Learn constructive ways to handle emotions; exercise, talkwith friends, read a journal, or practice relaxation techniques
Practice positive self-talk
Recognize depression and get help for it
Arrange to make time for yourself, your interestsand friends
Attend support group meetings and talk aboutyour problems
Learn how to face your loved one's physicalchallenges
Let the loved one do as much as possible whilehe/she is still able
Deepen your faith and spirituality10
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APDA SUMMER 2008
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Questions & Answers
BY ENRICO FAZZINI, DO, PhDAssociate Professor NeurologyNew York University, New YorkUniversity of Nevada, Las VegasN.Y. Institute of Technology, Old Westbury
Q: I have Parkinson's disease forseven years. I was on the Neupropatch and doing well but it was dis-continued. I am still on Sinemet25/100 three times a day and twoZepalar 1.25 tablets in the morning,but I am very stiff during the nightand I get very tired after lunch andcannot move. What can I do?
A: Requip XL is a long acting med-ication which is similar to Neupro inthat it directly stimulates areas of thebrain that need dopamine and workssmoothly for 24 hours. It can be start-ed as 2 mg a day and increased by 2mg per week until you reach a thera-peutic dose which in most people is 8mg a day. You should also make cer-tain that you take your Sinemet onehour before meals and keep your pro-teins (meat, chicken, turkey, pork,fish) low at lunchtime because theprotein can interfere with the absorp-tion of Sinemet.
Q: My wife has Parkinson's diseasefor 15 years. She gets panic attacksduring the day and breathes heavywith sweats. This also happens duringthe night. She takes Sinemet 25/250and Mirapex 0.5 mg four times a day.
A: There are times during the daywhen her medications are not work-ing. This is called “wear-off ” and inaddition to becoming physically slowand stiff, she develops a sense ofimpending doom or panic. Her
breathing becomes more difficultbecause her chest wall is getting stifferand there is a dilatation of blood ves-sels which makes her sweat. She prob-ably was always anxious or depressedand this has made her more prone togetting these panic attacks. Theanswer is to change her medicationsso that it does not wear off. This canbe done by increasing the Mirapexdose, lowering the Sinemet to25/100, adding Comtan and/orselegiline/Zelapar or Azilect and mak-ing sure she takes her medications atthree hour intervals for example 8 am,11 am, 2 pm, 5 pm with an 8 pmdose if needed. In addition, it wouldbe beneficial to add an antidepressantso she is not so sensitive to the psycho-logical effects of the erratic absorptionof L-DOPA (Sinemet).
Q: I have had essential tremor diag-nosed for ten years mostly involvingmy head. I am 60 years old. RecentlyI have had right shoulder surgery.The tremor has spread and I feel itthroughout my body. I have someslowness in my right arm. Myinternist said I might have Parkinson'sdisease but the local neurologist saidthere are not enough symptoms ofParkinson's disease and he wants meto try propranolol. What do youthink?
A: The diagnosis of Parkinson's dis-ease is made based on the presence ofbradykinesia (slowness of movement)plus either resting tremor, cogwheel
rigidity or walking abnormality suchas freezing, shuffling and/or balanceimpairment. It could be that thetremor you have is with action andthe slowness in the right arm may beattributed to the right shoulder sur-gery. In cases like this we sometimeswill use medicines to help us makethe diagnosis. If you get much betterwith propanolol you most likely haveessential tremor which has worsened.If you do not get better, Sinemet canbe tried and if this works you mostlikely have Parkinson's disease. Keepin mind that patients with essentialtremor may also develop Parkinson'sdisease so it is also a possibility thatyou have both conditions. I wouldagree that propranolol should betried.
Q: Is there a facility where a PDpatient can go and stay overnight ora few days for testing?
A: No. All of the medications aregiven by mouth and the changes inmedication may take days or weeksto have their full effect. The hospitalis a dangerous setting for PD patientsas medications are often not givenexactly according to your scheduleand patients may get disoriented andconfused. You can ask to be observedover an entire day in the doctor'soffice so that he/she can better appre-ciate what you look like when yourmedicines work too much and/or toolittle.
Lewis Carroll observedthat, “If you don't knowwhere you are going, any roadwill get you there.”
It appears that APDAscientific advisory boardmember James P. Bennett, Jr.,MD, PhD, knew from thestart that a career in sciencewas where he was going, witha small detour into medicine.
Winning a high school science fair was the begin-ning followed by a degree in chemistry from theUniversity of Florida. Medicine, however, was a sideroad he hadn't considered until a neurosurgeon/ neurol-ogist family friend in St. Petersburg described the firstpatient he put on L-DOPA.
“I was a chemistry graduate student in the late1960s, and that was before carbidopa, so it was difficultto predict outcomes.” Dr. Bennett remembers the doc-tor reporting that the next morning when he asked hispatient how she was doing, and she began to cry tears ofjoy because she told him that for the first time in 10years she could brush her own teeth. “I was so impressedwith the clinical usefulness of chemistry that I reluctant-ly went off to Johns Hopkins School of Medicine, butthen stayed around and entered grad school to get aPh.D in pharmacology. So in an unusual way, my careerwas shaped from the start by Parkinson's disease.”
In 1982, while chief neurology resident at theUniversity of Virginia School of Medicine (UVA),APDA recognized him with its fourth Dr. George C.Cotzias Fellowship, its most prestigious award given to ayoung neurologist to encourage his pursuit of research.That award was to be the first of more than $7 million(?) in National Institutes of Health grants that Dr.Bennett's work has brought to PD research. APDA hassubsequently funded an additional two of his researchstudies.
In 1990, he was an associate professor of neurology,tenured three years later, and reached full professor sta-tus four years later. Today he is the director of theUniversity of Virginia's Center for the Study ofNeurodegenerative Diseases as well as the Arthur andMargaret Ebbert Professor of Medical Science.
Dr. Bennett's is one of four labs that form UVA'scenter where the cause of neuronal death is beingsought. UVA is also one of APDA's nine centers foradvanced research, and the location of the VirginiaInformation & Referral Center.
In addition to his hands-on research work, Dr.Bennett is a dedicated mentor of young scientists andhas guided more than 30 predoctoral and postdoctoralstudents, many of whom hold associate and assistantprofessorships at prestigious academic institutionsaround the United States and abroad.
Both he and his wife, Donna, love the great out-doors and are active in local conservation and environ-mental pursuits. Thirteen years ago, for example, theyformed an organization to protect a local river. TheBennetts are the parents of two grown sons, Jamie, acopy editor, and Jason, a free-lance Web site designer/photographer.
SUMMER 2008 APDA
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F.Y.I.BY K.G. WHITFORD
F.Y.I. is a guide to the efforts and successes and recognition of the hundredsof volunteers and staff who work daily to help ease the burden and find acure for millions of persons with Parkinson’s disease and their caregiversacross the United States.
JAMES P. BENNETT JR., MD, PHD,APDA SCIENTIFIC ADVISORY BOARD MEMBER
Once again, an APDA research grant has pro-vided the seed money needed for a youngresearcher to obtain necessary data leading to amillion dollar award from the National Institutesof Health (NIH).
Christopher Bishop, PhD, was awarded theone-year APDA grant for his study, “Dorsal RapheRegulation of L-dopa Induced Dyskensia” in2007.
The five-year, $1.33 million award from theNIH's National Institute for NeurologicalDisorders and Stroke will allow Dr. Bishop, who isan assistant professor of psychology atBinghamton (N.Y.) University, and his colleaguesat Chicago's Veterans Administration Hospitaland Wayne State Medical School, Detroit to studythe effects of long-term use of L-dopa onParkinson's patients, especially dopamine-inducedDyskensia and other motor fluctuations.
APDA $50,000RESEARCH GRANTLEADS TO $1.3 MILLION NIH AWARD
The West promises to be wild onceagain - at least for a while – whenAPDA's San Fernando ValleyRegional Chapter co-sponsors the
2008 Ride for A Cure atGibson Ranch. The five-dayride 'em, rope 'em, penningevent will include live music,a stunt show, kiddies' stickhorse race, specialty acts anda celebrity team sorting.
While the national youngonset center is not yet twoyears old, coast-to-coastactivities are presenting edu-cational and social opportu-nities for hundreds of fami-lies. The seventh annualYOPD Retreat inColumbus, Miss., picked inencounter groups, discus-sions with nationally recog-nized neurologists, and net-
working, with great outdoor activities including fishing,hiking, and badminton. The Mississippi and TennesseeI&R Centers sponsor the retreat with the Birmingham(Ala.) Chapter. On the West Coast, four coordinators:Linda O'Connor, Martha Gardner, Debbie Baires andViviane Tondeur are putting the finishing touches to theirfirst Young Onset Parkinson's West Coast Retreat at theWonder Valley Ranch Resort and Conference Center, in theSierra Nevada foothills. The two-day event includes dailyParkinson's wellness session with yoga, T'ai chi, music ther-apy and relaxation techniques and dinner with NationalCenter director Julie Sacks and Arlette Johnson, the
founder of the coun-try's first young onsetI&R center. Thisevent, too, offers lotsof educational programs and time for outdoor activitiesincluding golf, horseback riding, boating, fishing and hik-ing. More information can be found on the APDA Website or by calling 866-499-2732.
Still rebuilding from the devasta-tion of Hurricane Katrina,Mississippi Chapter presidentRose Cutter and I&R Center coor-
dinator Brenda Allard have been working tirelessly torebound. After a successful Pine Belt tulip quilt raffle last
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APDA SUMMER 2008
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F.Y.I.
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“Proud Hands Personal Victorieswith Parkinson's/A Show ofHands,” a 60-page book of per-sonal profiles of people who havenot allowed Parkinson's diseaseto conquer their lives andlifestyles, is being given as a gift
to everyone contributing $15 or more to APDA tohelp meet is mission. The book was published byTeva Neurosciences to benefit APDA's researchefforts and to support people living with the dis-ease, their caregivers and educational programs.Contributions can be made by mail, by calling 800-223-2732 or on the APDA Web site www.apda-parkinson.org.
PROUD HANDS BOOK PROFILES PD HEROES
cont. on page 7San Fernando Valley RegionalChapter secretary Kathy Artsisand president Caryle Woolf doa little clowning around duringa Fourth of July parade whiledistributing more than 1,000flyers to promote the chapter'supcoming rodeo fundraiser.
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SUMMER 2008 APDA
F.Y.I.
APDA GROWING TO SERVICE THE PARKINSON'SCOMMUNITYWelcome to two new chapters, APDA's awareness and fund-raising arms, in Pennsylvania and East Texas. Heather Fritz,a physical therapist, is the president of the CentralSusquehanna Valley Chapter in Denville, Penn. Noemi EvaEvans is heading up the new chapter in Tyler, Texas with lotsof help from coordinator Kelly Pierson.
It may have taken three years, but the New Orleans I&RCenter wiped out by Hurricane Katrina has been relocated.Coordinator Maureen Cook, RN, and medical director JayRao, MD, are now at the Ochsner Foundation Clinic.
Two other centers have found new locations in theircities: the University of New Mexico is the new site for theAlbuquerque Center with Jeannine Boyle, coordinator andSara Pirio Richardson, MD, medical director; and Baylor
University Medical Center is the new Dallas site with KimWiser, coordinator, and Cole Giffler, MD, the medical director.
Trish Low, RN, is the coordinator in the newly openedPasadina, Calif. center at Huntington Hospital, and JeromeLisk, MD, is the medical director.
…ON A SAD NOTEFred Dyas, president of the San Antonio Chapter for thepast four years, died suddenly on June 13 of a heart attack.Fred was 60 years old, a former educator and grammarschool principal, and known as someone who lived withParkinson’s with courage, dignity and a sense of humor.APDA regional representative Joan Duval called him,“someone everyone loved. We will miss him and his won-derful photography.” Our sympathies go to his wife AnnaMarie and children, Scott, Anne, Mathew and Ashley.
AROUND THE COUNTRYyear, they decided to combine two proven successful fundraisers and created, to our knowledge, the first APDA Walk/Rock-a-Thon this year. “It's a challenge,” says Brenda, who immediately following the hurricane, distributed flyers in the mostdevastated areas to let people with Parkinson's know where to find help.
In between storms and starring as a featured subject in Teva Neurosciences book benefiting APDA,“Proud Hands Personal Victories with Parkinson's/A Show of Hands,” Iowa coordinator Sam Erwinhas been busy raising awareness and funds for APDA. With temperatures in the misty 40s and witha strong wind, she led
a brave contingent around the Cedar LakeTrail for its annual walk-a-thon. Despite thoseaforementioned storms that included floodsand power outages, more than 200 peopleattended the all-day annual conference in WestDes Moines. Among the speakers wereAPDA's national young onset director, JulieSacks, and Amy Comstock Rick, executivedirector of the Parkinson's Action Network.
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Iowans with PD banding together to raisingawareness are (l-r) Sam Erwin, Bill Hinkle,LaDona Molander, Mike Ketcham, Marc Quadeand Deb Wityk. Gwen Peterson is seated.
An estimated 47 million Americans have no healthcare coverage.
We have been informed that Novartis, recognizing theneed to help these people by providing them with easi-er access to quality health care has launched the“Patient Assistance Now” program. Such program inte-grates Novartis and non-Novartis resources to helppatients pay for their medicines; learn about specificdiseases, conditions and drugs and obtain informationabout ongoing and planned clinical trials.
People can visit the online Web site, www.patientas-sistancenow.com, or call 1-800-245-5356 for specificinformation about programs and services available.
APDA SUMMER 2008
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the SN. In PD patients' postmortem tissue, and in animalmodels of PD, inflammatory cells and markers of inflam-mation such as cytokines are present in the SN where celldeath is occurring. In animal models, nonsteroidal anti-inflammatory drugs (NSAIDs) exert a neuro protectiveeffect - slowing or preventing the development of PD.
In a most recent study done at the University ofCalifornia, Los Angeles (UCLA) researchers evaluated 293patients with typical PD and compared them to 286 age,race and sex matched control patients without PD. Thestudy looked at the patients' use of aspirin or non aspirinNSAIDs such as ibuprofen (Motrin®, Advil® etc.) ornaproxen (Aleve® and others) as well as other prescriptionNSAIDs. Most patients were using the NSAIDs for arthri-tis but the aspirin users may have been taking them forstroke or heart attack protection. The results showed nonaspirin NSAIDs were protective and lessened PD risk by50% and the protection increased to 60% diminished riskof PD in those patients taking them for more than twoyears. The protective benefit was more modest with anapproximately 20% reduction in risk of PD in women. Formen, aspirin seemed to have no clear benefit in reducingPD risk.
An interesting twist in this picture of cell protection inthe SN comes from a study done in New York which eval-uated a large number of patients with PD and controlpatients, and assessed them for behaviors such as drinkingcoffee regularly, or smoking, as well as use of NSAIDs. Inthat study, the combination of smoking, coffee use and useof NSAIDs had an 87% reduction in the risk of develop-ment PD.
What does this mean for patients who currently havePD? Should they be advised to sit on the patio, have a cupof coffee, smoke a cigarette and take a few Advil? I thinknot! There are no medical studies to show there is a benefitof slowing the disease progression by taking NSAIDS onceyou have the disease. These anti-inflammatory drugs dohave potential risks since they can cause peptic ulcers andgastrointestinal bleeding and in some patients they cancause kidney or liver damage. Smoking cigarettes has clearhealth risks. A cup of coffee or two may not hurt and mayhelp combat the daytime drowsiness in PD patients.Protecting the SN cells from slowly and progressively dyingoff in PD remains a challenge for which we do not have aclear answer.Cell Replacement
What about replacing the SN cells that are dying in PD?Two prior papers on stem cell research in the last threemonths are very promising for PD patients. In November2007 in the journal, Nature, the group at Oregon NationalPrimate Research Center reported the successful produc-
tion of a stem cell line in primates (monkeys). This was cre-ated by transferring a nucleus from a skin fibroblast into afertilized monkey egg that had the DNA removed. Theresulting stem cell line has neuronal stem cells markers andcan become brain cells which could theoretically be used toreplace those lost in PD. Other cells were prodded tobecome heart cells and were observed to be “beating heartcells.” This represents a breakthrough since prior to this,primate cells have been impossible to coax into the stem cellstate.
The other report also came in November 2007. This onein the journal, Science. It was from the laboratory of JamesThomson, Ph.D. at the University of Wisconsin, who hadcreated the first line of stem cells from human embryos.The current study is truly a breakthrough for both scientistsand ethicists. They identified four genes that reprogramskin cells to become stem cells. The cells they produced areindistinguishable from embryonic stem cells in that they canbe given orders to turn into any cell type in the body suchas SN cells in PD patients. Since there is no need with thistechnique for human eggs or embryos, the ethical issues ofdestroying one life to help another are averted. This waslauded as an advance in “ethical stem cell research” byPresident Bush.
The new technology, however, uses cancer genes andretroviruses (AIDS-like viruses), both of which may createproblems with tumor growth from the newly created stemcells. Needless to say, these safety issues will have to beworked out. To this date, the only successful treatment ofPD with stem cells was achieved in a rat model PD in year2005.
This article was adapted from the one published in the Winter2008 newsletter of the APDA Deerfield Beach, FL I&R Center.
cont. from page 1Cells and Parkinson’s Disease
PATIENT ASSISTANCE
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SUMMER 2008 APDA
Ifrequently receive confidentialcalls from newly diagnosed indi-viduals who are seeking informa-
tion about Parkinson's disease (PD),but wish to remain anonymous ornon-involved at this time. We knowthat PD does not just “happen” to theindividual who is diagnosed as havingit. It also impacts the family, friendsand co-workers who sincerely careabout your well-being. Deciding whenand how to share the news is based onthe dynamics of your relationship andyour comfort level in sharing this kindof news.
In Chapter 7 of the recently pub-lished book, Parkinson Disease forDummies, by Tagliati, Guten andHorne (Wiley Publishing Inc. 2007),the authors suggest that it is your jobto establish the ground rules and indi-cate what will and will not be helpfulfor you. Initially you may need peopleto listen, to distract you when neces-sary, and to give you the gift of nor-malcy. Remember, too, that acceptinghelp when it becomes needed, is not asign of weakness.
An upbeat, optimistic attitude isan effective weapon against PD. Aswith any health issue, your physicaland mental health at the onset ofdiagnosis can have an enormous effecton the progression of the disease.
Having PD raises many concernsfor the spouse or partner of a personliving with the condition. Partners toocan suffer from anxiety and depres-sion over the unknown future and therisk of disability, job, economic lossesand increased dependence. How PDwill impact your relationship willdepend greatly on the kind of rela-tionship you had before the diagnosis.If you are able to communicate andshare your feelings and concern with
each other in a very accepting manner,chances are your relationship cangrow stronger. Your partner and youwill need to work your way throughthe questions on how this diagnosis isgoing to affect your lives-both indi-vidually and together. The rolesyou've settled into may undergo amake-over as your PD progresses.Fortunately, this progression usuallyoccurs over a period of years withample time to adjust.
Don't rush into changes beforethey are necessary. Take time to planthe way that you can adjust certaintasks or roles before you give them up.When you decide the time is right toshare your news with your immediateand extended family, stick to thebasics: what is PD, whether others inthe family are at risk, how PD is treat-ed, what your prognosis is. We andother APDA I&R Centers have anextensive library of books, bookletsand educational supplements availablewhich can help you in this process.
Most newly diagnosed individualswant to learn how to live with PDwithout having people feel sorry forthem or treat them differently. Aswith other illnesses, you are still you!Give the people you care about the
chance to love you enough to help.Remember that your friends may
have already noticed your symptomsand discussed their concerns witheach other. Friends can listen whenyou don't really want to burden yourpartner. And they can take your focusoff PD to get you back on the track ofliving the life you've planned. Thereare people who play a role in your life,but not a vital or intimate one (neigh-bors, group associates, professionals.)You needn't feel compelled to breakthe news to them; however, don'tunderestimate the resources that maycome from one of these people. Setthe tone for their responses, correctmisinformation they may have aboutPD and appreciate their concern andsupport. Over time your PD willbecome more difficult to disguise.Even if you can manage the outwardsymptoms, the stress of trying to keepit a secret can drain you.
Finally, the individuals with PDhave the right to decide when andhow to share the news, how to face thechallenge, and how to maintain thosefacets of their life that were part oftheir identity pre-PD diagnosis for aslong as possible (even if it takes a littlelonger to do so!)
When And How To Share Your NewsBy Deborah Dalin Guyer, MA, CCC-SLP,Coordinator, Saint Louis, MO, APDA I&R Center
Jason Cannon, Ph.D.
William Caudle, Ph.D
Yeun Choo, Ph.D.
Stephen Crimmins, Ph.D.
Gizem Donmez, Ph.D.
Robert Drolet, Ph.D.
Muralidhar Hedge, Ph.D.
William Lin, Ph.D.
Zhihui Sun, Ph.D.
Daniel Tardiff, Ph.D.
Ravindar Thomas, Ph.D.
Yulan Xiong, Ph.D.
Nanyan Zhang, Ph.D.
University of PittsburghPittsburgh, PA
University of WashingtonSeattle, WA
Burnham Institute for Medical ResearchLa Jolla, CA
University of AlabamaBirmingham, AL
Massachusetts Institute of TechnologyCambridge, MA
University of PittsburghPittsburgh, PA
University of TexasGalveston, TX
University of ChicagoChicago, IL
University of PennsylvaniaPhiladelphia, PA
Whitehead Institute for Biomedical Res.Cambridge, MA
University of VirginiaCharlottesville, VA
Johns Hopkins UniversityBaltimore, MD
University of ColoradoAurora, CO
Genetic and Environmental Interactions in Parkinson'sDisease: Potential for New Therapeutic PathwaysProteomic Analysis of VMAT2 under Normal and Pathological ConditionsRegulation of Parkin by Neddylation
Reduction of Alpha-Synuclein and Neuroprotection Against its Toxicity by Enhancing Proteasome ActivitiesAnalysis of the Role of SIRT2 Protein in Parkinson's DiseaseGastrointestinal Dysfunction in the Rotenone Model of Parkinson's Disease Role of Transition Metals in Inhibiting Repair of OxidizedBases in Genome: Relevance to Parkinson's Disease
Mechanism and Function of Cytosolic PINK1
Investigating Synuclein Gene Function In Zebrafish
Mitochondrial Proteomics of a Yeast Parkinson's Disease ModelDevelopment of Mitochondrial Gene Therapy for Parkinson's Disease
Modeling LRRK2-Induced Toxicity in Yeast
Delineating Protein Coaggregation during Lewy BodyFormation
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APDA SUMMER 2008
APDA RESEARCH FUNDINGUniversity of Virginia Medical Center
Charlottesville, VAWashington University Medical Center
St. Louis, MOUCLA School of Medicine
Los Angeles, CA
Emory University School of MedicineAtlanta, GA
Robert Wood Johnson Medical SchoolNew Brunswick, NJ
Boston University School of MedicineBoston, MA
University of PittsburghPittsburgh, PA
University of AlabamaBirmingham, AL
The University of ChicagoChicago, IL
David Hinkle, MD, Ph.D.
Bradley Miller, MD, Ph.D.
Talene Yacoubian, MD, Ph.D.
University of PittsburghPittsburgh, PA
University of Virginia,Charlottesville, VA
The University of Alabama,Birmingham, AL
The Potential Role of Antioxidant Systems in the Mechanismof DJ-1 Dependent Astrocytemediated NeuroprotectionDistribution and Metabolic Consequences of MitochondrialDNA Deletions in Substantia Nigra and Cultured Cells
Role of 14-3-3 Proteins in Alpha Synuclein Induced Neurotoxicity
Andrei Alexandrescu, Ph.D.
Jeffry Stock, Ph.D.
Marc Tatar, Ph.D.
University of ConnecticutStorrs, CT
Princeton UniversityPrinceton, NJ
Brown UniversityProvidence, RI
Stability and Solvent Accessibility of Alpha-SynucleinFibrils by NMR Hydrogen ExchangeProtein Phosphatase 2A Methylation as a Therapeutic Target for Parkinson's DiseaseAssessing the Pathogenic and Molecular Consequences of FOXO Regulation by Parkin
Post-Doctoral Fellowships
Research Grants
Cotzias Fellowships
Roger Duvoisin, MD Grant
Centers for Advanced Research
Hans Bueler, Ph.D.
Ippolita Castelvetri, Ph.D.
Savio Chan, Ph.D.
Linan Chen, MD, Ph.D.
Shu Chen, Ph.D.
Shankar Chinta, Ph.D.
Paul Davenport, Ph.D.
University of KentuckyLexington, KY
Massachusetts General HospitalCharlestown, MA
Northwestern UniversityChicago, IL
University of ChicagoChicago, IL
Case Western Reserve UniversityCleveland, OH
Buck Institute for Age ResearchNovato, CA
University of FloridaGainesville, FL
Identification of PINK1 Substrates Using Conditional PINK1Knockout Cells and Quantitative PhosphoproteomicsBiological Basis for Diferential Susceptibility to Alpha-Synuclein Pathology in the Male and Female Human BrainSriatopallidal GABAergic Signaling in Mouse Models ofParkinson's Disease
Transgenic Overexpression Selectively in Dopamine Neurons via Controlled Genetic AmplificationTransgenic C. Elegans Model of LRRK2-Linked ParkinsonDisease
Potential Neuroprotective Role of Resveratrol in Parkinson's Disease Mouse ModelsCentral Neural Gating of Pharyngeal Mechanically ElicitedCortical Evoked Potentials (CEP): An Evaluation of
Swallow Neural Integration in Parkinson's Disease (PD)
11
SUMMER 2008 APDA
FOR FISCAL YEAR 2008-2009Wei Ming Duan, MD, Ph.D.
Jian Feng, Ph.D.
Matthew Goldberg, Ph.D.
Steven Johnson, MD, Ph.D.
Shubhik Kumar, Ph.D.
Darren Moore, Ph.D.
Gerardo Morfini, Ph.D.
Anthony Nicholas, MD, Ph.D.
Arnulfo Quesada, Ph.D.
Hardy Rideout, Ph.D.
Jean Rochet, Ph.D.
Subhojit Roy, Ph.D.
Derek Siebruth, Ph.D.
Wanli Smith, MD, Ph.D.
Shaji Theodore, Ph.D.
Enrique Torre, Ph.D.
Kala Venkiteswaran, Ph.D.
Harrison Walker, MD
Gaofeng Wang, Ph.D.
Andrew West, Ph.D.
Kui Xu, MD, Ph.D.
Fu-Ming Zhou, MD, Ph.D.
Jianhui Zhu, Ph.D.
Xiongwei Zhu, Ph.D.
Omar Atassi
Anthony Burrows
Ephraim Church
Jennifer Kosty
Neena Marupudi
Jennifer O'Malley
Research Grants (continued)
Medical Student Fellowships
Louisiana State UniversityShreveport, LA
State University of New YorkBuffalo, NY
UT Southwestern Medical CenterDallas, TX
Portland VA ResearchPortland, OR
Lake Forest CollegeLake Forest, IL
Johns Hopkins University
University of IllinoisChicago, IL
University of AlabamaBirmingham, AL
Brentwood Biomedical Research InstituteLos Angeles, CA
Columbia University,New York, NY
Purdue UniversityWest Lafayette, IN
University of CaliforniaJolla, CA
University of Southern California,Los Angeles, CA
Johns Hopkins University School of Med.Baltimore, MD
University of AlabamaBirmingham, ALEmory University
Atlanta, GAPenn State Hershey College of Medicine
Hershey, PAUniversity of Alabama
Birmingham, ALUniversity of Miami
Coral Gables, FLUniversity of Alabama
Birmingham, ALMassachusetts General Hospital
Boston, MAUniversity of Tennessee
Memphis, TNUniversity of Pittsburgh
Pittsburgh, PACase Western Reserve University
Cleveland, OH
Generation of Dopaminergic Neurons from Endogenous Stem Cells in the Brain of a Mouse Model of Parkinson's DiseaseGenerating Patient -Specific Induced Pluripotent StemCells to Study Parkinson's DiseaseParkin, DJ-1 and Glutathione Peroxidase-Deficient Mouse Models of PDRedox Regulation of NMDA Currents in MidbrainDopamine NeuronsA Study of Autophagic Regulation of Alpha-Synuclein Toxicity in Yeast
Dopamine Neuron-Specific Accumulation of Mitochondrial DNA Mutations in MiceMolecular Mechanisms Underlying MPP+ InducedActivation of Cytoplamic Dynein-Based Vesicle Transport
Gene Analysis of Histone Deacetylation in Levodopa-Induced Dyskinesia and PrimingA Promising New Protective Factor for Parkinson's Disease
Modification of LRRK2 Oligomerization andNeurodegeneration by 14-3-3
Role of ATP13A2 (PARK9) Dysfunction in Parkinson'sDisease
Effects of Alpha-Synuclein on Fast and Slow Axonal TransportLarge Scale Analysis of Synaptic Architecture in Alphasynuclein Expressing Neurons
Autophagy and LRRK2-Linked ParkinsonismInhibiting Nuclear Factor Kappa B Signaling and MicroglialActivation in a Mouse Model of Parkinson's Disease
Significance of mRNA Transport and Translation within the Dopaminergic Axon
Transplantation of Transdifferentiated Dopaminergic Neurons Derived from Human Retinal Pigment Epithelial CellsBilateral Clinical and Neurophysiological Effects of Unilateral STN DBS in PDThe Role of miRNA in Olfactory Deficit of Parkinson's Disease
Development of Cell Based Kinase Assays for LRRK2
Neuroprotection by Urate in Cellular Models of Parkinson's DiseaseAn Ultra Short Dopamine Pathway: Part II. Signaling MechanismsATP13A2 and Autolysosomal Pathology in Parkinson's Disease
Role of Impaired Mitochondrial Dynamics in MutantLRRK2 Induced Toxicity
Johns Hopkins University, Baltimore, MD
University of Massachusetts Medical School,Worcester, MA
University of Pennsylvania School of MedicinePhiladelphia, PA
University of Pennsylvania School of MedicinePhiladelphia, PA
Penn State College of MedicineHershey, PA
University of CincinnatiCincinnati, OH
APDA SUMMER 2008
Single copies of the following publications may be obtained free of charge by writing to the national APDA office orby calling 1-800-223-2732, faxing to 1-718-981-4399, or contacting any of the 62 APDA Information and ReferralCenters throughout the United States.
BOOKLETS1. Basic Information about Parkinson’s Disease Brochure (English)2. Parkinson’s Disease Handbook - Symptoms, causes, treatment - (English, German, Italian)3. Be Active - An exercise program for people with Parkinson’s disease recently published by the AmericanParkinson Disease Association. This comprehensive educational booklet was written by Terry Ellis, PT, PhD,NCS, Tami Rork, PT, MSPT and Diane Dalton, PT, DPT, OCS of the Center for Neurorehabilitation,Sargent College, Boston University. - (English)4. Be Independent- Equipment and suggestions for daily living activities - (English)5. Speaking Effectively - Speech and swallowing problems in Parkinson’s disease - (English)6. Good Nutrition - (English)7. Young Parkinson’s Handbook - (English)8. Aquatic Exercise for Parkinson’s Disease - (English) 9. My Mommy Has PD... But It’s Okay! - booklet for young children. (English) The Next Step After Your Diagnosis: Finding Information and Support - It can be obtained by calling 800-358-9295 and requesting booklet AHRQ Publication No. 05-0049
SUPPLEMENTSThe Family Unit; Hospitalization of a Parkinson Patient; Fatigue in PD; Healthy Aging; Keys for Caregiving;Medications to Be Avoided or Used with Caution in PD; Neuro-opthamology and PD; Medical Managementof PD and Medications Approved for Use in the USA and others.
BROCHURES1. Basic Information (English, Spanish, Chinese)2. How To Start a Support Group (English)3. National Young Onset Parkinson Disease (English)
DVD’SManaging Parkinson’s - Straight Talk and Honest Hope, 2nd EditionCreated by the Washington State Chapter of APDA for newly diagnosed Parkinson’s patients and their lovedones.
“Next Step After Your Diagnosis/Tips for Taking Medication Safely” - DVD No AHRQ 07-M025 can beobtained, free of charge, from the Agency for Healthcare Research and Quality by calling 800-358-9295, or888-586-6340 (hearing impaired only) or by e-mailing www.ahrq.gov
WEB SITESwww.apdaparkinson.org for APDA I&R Centers, Chapters, Support Groups, education and informationmaterial, meeting dates, medical abstracts, clinical trials and research application guidelines.
www.wpda.org. A weekly updated source of world news from the website from the World Parkinson DiseaseAssociation
Materials concerning research in the field of Parkinson’s disease, and answers to readers’ questions are solely for the information of thereader and should not be used for treatment purposes, but rather as a source for discussion with the patient’s health provider.
THE PRINTING AND DISTRIBUTION OF THIS NEWSLETTER WAS PARTIALLY SUPPORTED BY A GRANT FROM NOVARTIS.
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Information on Parkinson’s Disease
Educational Material
