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- Bu səhifədəki naviqasiya:
- Environmental Factors and Parkinson’s: What Have We Learned
- Proteins May Travel from Cell to Cell, Spreading Parkinson’s in the Brain
- Chock full o’ Nuts Helps Fight Parkinson’s See page 10 for full story By Caroline M. Tanner, M.D., Ph.D.
- Parkinson’s Awareness Month
- Shatter the Myths of Parkinson’s this April!
- 2011 CITY/STATE PROCLAMATION TEMPLATE
- Sample Proclamation 21 Parkinson’s
- Educating Yourself Others...
- Supported by PDF on on Research Research Christina Vaughan, M.D., M.H.S.
- Dr. Christina Vaughan C REATE A P ARKINSON ’ S L
- By opening a charitable gift annuity or including PDF as part of your estate plan you will: (800) 457-6676 | www.pdf.org
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N E W S I N B R I E F >> Read more on page 2 >> Read more on page 6 >> Read more on page 6 I N T H I S I S S U E S P R I N G 2 011 Environmental Factors and Parkinson’s: What Have We Learned? News
Review Get Involved in Parkinson’s Awareness Month 2 Spotlight on Research 3 Legal Issues & PD: Medicaid 4 The Advocate Report: Sue Dubman of Massachusetts 9 Advisory Council Member Raises $37,000 11
Spreading Parkinson’s in the Brain A new study suggests that a dam- aged protein can spread from sick cells to healthy ones in the brain, providing a possible explanation for how Parkinson’s disease (PD) progresses. The study ap- pears in the January 19 online edition of the Journal of Clinical Investigation. In people with Parkinson’s, neurons — the nerve cells in the brain that help control the body’s movements — de- velop clusters of a protein called alpha- synuclein. When these proteins clump together, they are known as Lewy bod- ies, and these have been linked to the cell death that triggers PD. In earlier research, two separate teams — one led by Patrik Brundin, Ph.D., M.D., at Lund University in Swe- den and the other led by Jeffrey Kor- dower, Ph.D., at the Parkinson’s Disease Foundation (PDF) Center for Parkinson’s Research at Rush University in Chicago — studied the brains of people with PD who had received transplants of healthy young neurons as a therapy. Both teams found that the newly transplanted neu- rons also developed Lewy bodies, sug- gesting that they “contracted” PD from
Scientists generally agree that most cases of Parkinson’s disease (PD) result from some combination of nature and nurture — the interaction between a person’s underlying genetic make-up and his or her life activities and envi- ronmental exposures. A simple way to describe this is that “genetics loads the gun and environ- ment pulls the trigger.” In this formulation, “environment” has a very broad meaning — that is, it refers to any and all possible causes other than those that are genetic in origin. The interactions between genes and environment can be quite com- plex. Some environmental expo- sures may lower the risk of PD, while others may increase it. Simi- larly, some people have inherited a ge- netic makeup that makes them more or less susceptible to the effects of toxi- cants, or poisonous agents, than oth- ers. The effect of a combined exposure can be greater — or lower — than a single exposure. All of this means that the particular combination of factors leading to PD is likely to be unique for each person. These combinations, in different ways, may trigger a common series of biological changes that will ul- timately lead to the disease. Scientists are beginning to tease apart the non-genetic factors that influ- ence PD risk. In particular, epidemiolo- gists are working to identify differences in the experiences of people who develop PD, compared to those who do not. But identifying these risk factors can be difficult. And when we do identify them, they serve only as clues. They do not provide a direct explanation for the cause of Parkinson’s, so scientists must supplement these population studies with laboratory experiments. The following is a list of some of the risk factors for which we have found some evidence of an association with PD. For the most part, it is too soon to make recommendations for how to prevent Parkinson’s based on this research. However, these results may help us to understand the causes of PD, and provide direction for future research and therapy development. April is Parkinson’s Awareness Month. Over the years, you have told us that the public needs to better understand Parkinson's and we agree. This April, join the Parkinson’s community in shattering the myths of Parkinson’s by: Shatter the Myths of Parkinson’s this April! PDF is offering a free 30-page 2011 toolkit with tips on ways to make a difference this coming April. Order your free copy today. 2 PA R K I N S O N ’ S D I S E AS E F OU N DAT I O N
the brain in which they were transplanted. In the new study, Dr. Brundin and his colleagues tested the idea that alpha- synuclein can travel from one cell to an- other. First, the team studied the process in cell culture. They moved on to experi- ments with mice with PD symptoms, that showed excess alpha-synuclein in their brains. The researchers transplanted healthy neurons into the brains of these mice and observed their effects. Results •
one neuron to another in both cell cul- ture and in living animals • There is a specific mechanism by which this travel takes place • When alpha-synuclein enters a healthy neuron, it can initiate or “seed” the for- mation of Lewy body clumps. What Does it Mean? This study aimed to assess the “con- tagious protein” hypothesis of Parkin- son’s, which theorizes that neurons may “infect” other neurons with damaged alpha-synuclein, a protein that seems to be important in determining how PD de- velops. In 1997, Stanley Pruziner, M.D., received the Nobel Prize for his surprising discovery that some damaged proteins, rather than live organisms such as viruses, can be infectious. Damaged or mis-folded proteins have since been im- plicated in such conditions as mad cow disease. The new study demonstrates that alpha-synuclein is able to enter and affect healthy neurons. It also suggests that the protein may initiate the formation of new Lewy body clumps which are the hallmark of Parkinson’s. Much about the nature of the alpha-synuclein “seeding” process remains unclear. Additional re- search is required to assess whether alpha-synuclein “infectivity” is a cause of PD disease progression, or is simply a minor aspect of the disease itself. Lastly, these results — if they are confirmed by future studies — suggest that the toxic form of alpha-synuclein should be seen as a target of new therapies. >> Read more on page 8 April is Parkinson’s Awareness Month N E W S & R E V I E W S P R I N G 2 011 S p re a d th e W o rd E d u c a te Y o u rs e lf
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e C u re 2011 CITY/STATE PROCLAMATION TEMPLATE WHEREAS, Parkinson’s disease is a progressive neurological movement disorder of the central nervous system, which has a unique impact on each patient; and WHEREAS, according to the Parkinson’s Action Network, the Parkinson’s Disease Foun- dation, the National Parkinson Foundation, the American Parkinson Disease Association and the National Institutes of Health, there are over one million Americans diagnosed with Parkinson’s disease; and WHEREAS, symptoms include slowness, tremor, difficulty with balance and speaking, rigidity, cognitive and memory problems; and WHEREAS, although new medicines and therapies may enhance life for some time for people with Parkinson’s, more work is needed for a cure; and WHEREAS, increased education and research are needed to help find more effective treatments with less side effects and ultimately a cure for Parkinson’s disease; and WHEREAS, a multidisciplinary approach to Parkinson’s disease care includes local Well- ness, Support, and Caregiver Groups; and
Month Toolkit APRIL 2011 one community working for a cure
• Focus the media on PD! Use our press releases, statistics and tips to help you tell your story. • Make Parkinson’s Awareness Month official in your state or city, using a sample proclamation from the toolkit. • Hang up posters from PDF around your community to publicize the need for a cure. Educating Yourself & Others... • Shatter the myths of PD by participating in our video and photo campaign at www.pdf.org/parkinson_awareness. • Join PDF’s PD ExpertBriefing,“What’s in the Parkinson’s Pipeline?” by phone or online, on Tuesday, April 12. • Bring the Parkinson’s Quilt to your community, by renting an 8’ by 8’ block to show the impact of PD. Supporting the Cure... • Raise funds for research by joining our “30 in 30” Parkin- son’s Awareness Month Event Challenge. Sign up to hold your own fundraising event in April, whether it’s a bake sale, a walk or a 5K run and we’ll help you do it! Visit www.pdf.org/ pdf_champion. • Set up your own web page in honor of someone who lives with PD. Visit www.pdf.org/pdf_champion. • Purchase the official PDF Parkinson’s Awareness Month T- Shirt at www.pdf. org/shop. (800) 457-6676 |
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PA R K I N S O N ’ S D I S E AS E F OU N DAT I O N 3 N E W S & R E V I E W S P R I N G 2 011 seen several of her loved ones live with the disease. But she was unsure at that time as to what form her ca- reer would take. After receiving a bachelor’s degree in neuroscience, she went on to complete a master’s degree in Health Science at Johns Hopkins University, where her focus was on mental health, aging and neurodegen- erative disease. Her office-mate, a Parkinson’s nurse specialist named Lisette Bunting-Perry, Ph.D., suggested that Dr. Vaughan apply for the PDF grant to take advantage of an opening at the University of Pennsylvania Parkin- son’s Disease and Movement Disor- ders Center, in Philadelphia, PA, on a study looking at the long-term effects of deep brain stimulation (DBS). (Dr. Bunting-Perry, a leader in nursing edu- cation, recently helped to develop an online nursing course in Parkinson’s, offered by PDF in collaboration with other PD organizations.) Dr. Vaughan was accepted and spent the summer of 2002 examining people living with Parkinson’s who had undergone DBS, and interviewing them about their post-surgery experi- ence. During her time at Penn, she worked with several leaders in the Parkinson’s field, including her mentor Andrew D. Siderowf, M.D., whose lat- est study on cognitive testing for Parkinson’s was published on the PDF website just a few months ago. And where did Dr. Vaughan end Supported by PDF on on Research Research Christina Vaughan, M.D., M.H.S. Christina Vaughan, M.D., M.H.S., has come full circle as a member of the Parkinson’s Disease Foundation (PDF) team. In her cur- rent role as an ad- visor to the PDF HelpLine, Dr. Vaughan — a post-doctoral Fel- low in movement disorders at Rush University Med- ical Center in Chicago — helps to an- swer unusual and difficult questions about Parkinson’s disease (PD) and keeps our staff updated on new devel- opments in research and care. But when Dr. Vaughan first came to PDF nine years ago, it was as an ap- plicant for one of our Summer Student Fellowships. This program funds stu- dents at several levels, from advanced undergraduates to graduate and med- ical students, to pursue Parkinson’s-re- lated summer research projects under the guidance of leaders in the field. Dr. Vaughan already had a per- sonal interest in Parkinson’s, having up? She maintained the focus on men- tal health that she began while at Hop- kins, but is now combining this expertise with her knowledge of PD. Following the completion of her med- ical degree and a residency in neurology at the University of Pittsburgh, she moved to Rush (which is one of PDF’s research centers), where she is training to be a Parkinson’s specialist with a spe- cial interest in the mental health of peo- ple with Parkinson’s. As PDF Scientific Director Stanley Fahn, M.D., noted last year, “We need to be sure that the best talent is at- tracted to the challenge of solving Parkinson’s and helping those who live with it.” With doctors like Dr. Vaughan on board, we are hopeful for the future. Dr. Vaughan still remembers her PDF summer fellowship. She says it, “opened up opportunities to work with some of the best Parkinson’s researchers and to have a very meaningful clinical experience with people living with Parkinson’s.” She also noted that “while my plan to pursue neurology and movement disorders was first in- spired by my family members with Parkinson’s, this fellowship definitely helped to strengthen that plan.”
• Become a member of The James Parkinson Legacy Society • Combine your charitable giving with your estate and financial planning goals • Benefit from a substantial tax deduction • Receive guaranteed income for the rest of your life By opening a charitable gift annuity or including PDF as part of your estate plan you will: (800) 457-6676 | www.pdf.org | info@pdf.org 4 PA R K I N S O N ’ S D I S E AS E F OU N DAT I O N N E W S & R E V I E W S P R I N G 2 011 By Janna Dutton, J.D. For people with Parkinson’s dis- ease (PD) and their families who are thinking about the possible need for long-term medical care, it is important to understand what help may be avail- able through Medi- caid. As we have mentioned in previ- ous installments of this four-part series covering legal is- sues and Parkinson’s, long-term care includes not just the services of a skilled nursing facility, but such resources as assisted-living communities and the in- home aides who can help you with per- sonal needs such as dressing, shopping, eating and cooking. The term can also include community services. Medicaid, which is funded jointly by federal and state governments, is separate from Medicare, the program for older Americans. Medicaid helps people with few financial resources to pay for medical care and can pay for long-term care services. Determining eligibility for Medicaid, however, is complex, and varies from state to state. In general, to be eligible you will need to show family income below a certain level, but there are provisions to enable you to keep certain assets without los- ing eligibility. In the last three issues in this se- ries, we reported on the importance of long-term care, and delegating deci- sions for health care and financial mat- ters. In this final article, we discuss the basics of eligibility for long-term care under Medicaid. If you think that you may need help in paying for long-term care in the future, it is best to begin in- vestigating Medicaid now. By plan- ning ahead, you also can help ensure that your assets are protected. General Eligibility The federal government establishes general guidelines for Medicaid. In general, in all states, to be eligible for Medicaid coverage of long-term care in a nursing home, assisted living, or in- home program, you must be: • over the age of 65, or disabled • able to show that you do not have enough income to pay for your needed care • able to show that you have not made a non-allowable transfer of assets during a certain period of time before your application (see details below) One of the most important things to understand about Medicaid is that each state administers its own Medi- caid program. Because of this, the services that are covered by Medicaid vary significantly from state to state — as do the income limits that are used to establish eligibility for the program. In most states, as long as your ac- countable monthly income — that is, your net income after adjustment for certain allowable deductions — is less than the cost of your care, you will be eligible for Medicaid. Be aware that there are ways to protect certain as- sets to ensure you can provide for your needs and those of your family without losing your eligibility. Supporting Your Spouse If you bring in most of the house- hold income, and also need nursing home care, the eligibility rules will usu- ally allow you to give some portion of your income to supporting your spouse who is still living at home. A spouse who lives at home is called, in legal terms, a “community spouse” (here- inafter described simply as “spouse”). The rules will also allow you to take a deduction for the funds you have set aside for your spouse if he or she qualifies for it. Allowable Assets Some types of property are consid- ered exempt from consideration for Medicaid eligibility. These include: • $2,000 in a bank account, for the purchase of clothing and other items • Homestead property (this helps pro- tect your home, but in some cases the equity protected is limited) • Personal effects and household goods • Automobile worth $4,500 or less (if needed for medical transportation, modified, or for employment, the allowance is higher) • Burial plot, tangible burial items and exempt prepaid burial arrangements • An asset allowance for your spouse (calculating the amount allowed is complicated and varies by state) Transferring Assets Medicaid programs have regula- tions about how you can transfer funds to others without putting your eligibil- ity at risk, and recent legislation has made these regulations more stringent. For example, under the new law, the “look-back” for Medicaid eligibility is 60 months. This means that if today you are applying for Medicaid to cover long-term care, you must report on what you have done with your assets during the last five years. This provision is designed to make sure that people do not give away as- sets to make themselves eligible for Medicaid. If this review shows that you have made what is called a “non- allowable transfer” of funds or assets, you might be denied eligibility for Yüklə 1,38 Mb. Dostları ilə paylaş:
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