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Parkinsons

 
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crazyquilt  

Parkinson's Disease Resources

American Parkinson's Disease Association
This web site provides information about Parkinson's Disease, the Udall Act, current events, getting involved, fellowships and grants, video rental, chapters, and information and referral center locations.

 

 

Family Caregiver Alliance
A caregiver support organization for caregivers of adults with Alzheimer's disease, stroke, traumatic brain injury, Parkinson's disease, ALS and related brain disorders.

Family Caregiver Support Network (FCSN)
A Milwaukee, Wisconsin based free resource center that helps family caregivers of older adults. A family caregiver is a spouse, child, other relative, friend or neighbor who is concerned about, helps or cares for an older adult.

The HollyRod Foundation
Founded in 1997 by NFL quarterback Rodney Peete and actress Holly Robinson Peete in honor of Holly's father, Matthew T. Robinson, Jr, the organization is dedicated to providing medical, physical and emotional support to those suffering with Parkinson's disease. The HollyRod Foundation Web site provides information about Parkinson's Disease, events, contact information and links to other resources.

Muhammad Ali Parkinson Center
The Muhammad Ali Parkinson Center (MAPC) is a National Parkinson Foundation Center of Excellence, and a wonderful resource for people with Parkinson's and their families. Their staff is committed to providing excellence in diagnosis, treatment, research and education for people with Parkinson's disease (PD) and other movement disorders.

Michigan Parkinson Foundation
Localized education and support to people with Parkinson's and related disorders, their loved ones and care partners, and the physicians and other allied health professionals who diagnose and treat those affected by the illness. Monthly Care Partner Support Group.

National Family Caregivers Association
NFCA was the first national, charitable organization dedicated to making life better for all of America's family caregivers. Provides service in the areas of information and education; support and validation; public awareness and advocacy.

National Institute of Neurological Disorders and Stroke (NINDS)
This site contains a pamphlet written by the National Institute of Neurological Disorders and Stroke (NINDS). NINDS, one of the US Government's 17 National Institutes of Health in Bethesda, Maryland, is part of the Public Health Service within the US Department of Health and Human Services.

National Organization For Empowering Caregivers
The NOFEC is dedicated to providing assistance, education, support, respite and referrals for informal family caregivers, as well to promote public awareness about the realities of caregiving. They are committed to encouraging mutual collaboration with other organizations to serve the growing needs of family/informal caregivers.

National Parkinson Foundation
This is the web site for the NPF and has a complete menu of information on Parkinson's disease including support groups, patient services, disease information, clinical studies, a library, news, events, patient services, other links, and more.

Northwest Parkinson's Foundation
One of the most active Parkinson's organizations in the U.S. with an eye on improving the quality of life for those touched by Parkinson's Disease – patients, families and caregivers.

Parkinson's Disease Foundation
This is the web site for the Parkinson's Disease Foundation and contains information about Parkinson's disease, the foundation and an updated news area.

Parkinson's Disease Society
The stated aims of the Parkinson's Disease Society are to help people with Parkinson's disease and their families with the problems associated with the illness, to collect and disseminate information on Parkinson's disease and to encourage and provide funds for research into Parkinson's disease.

The Parkinson Alliance
The Parkinson Alliance was formed in January of 1998 with the aid of the National Parkinson's Foundation. Primarily designed for the Parkinson's disease patient with information on support groups, news, links to other PWP (people with Parkinson's) WebLink sites, jokes, political developments, and news. Informational Sites

Aging Solutions
Advice, comprehensive checklists, and links to key resources ... designed to make it easier for family caregivers to quickly find the information they need ... and avoid missing things that are important in the care of their loved one.

BioMedSearch
This is a free biomedical search site which has all of all of NIH's PubMed documents, plus many more (often in full text). People around the world have turned to the web for health and scientific information. BioMedSearch aggregates a vast number of authoritative documents in one place to make finding and sharing the right information easy, fast and free. It also has account features such as portfolios to save documents, the ability to share documents (and comment on them) between users, and keyword-based alerts.

Caregiver.com
A leading provider of information, support and guidance for family and professional caregivers. Founded in 1995, we produce Today's Caregiver magazine, the first national magazine dedicated to caregivers, the "Sharing Wisdom Caregivers Conferences", and our web site, caregiver.com which includes topic specific newsletters, online discussion lists, back issue articles of Today's Caregiver magazine, chat rooms and an online store. Caregiver Media Group and all of it's products are developed for caregivers, about caregivers and by caregivers.

Caregiver Survival Resources
Jim and Merlene Sherman draw on their 35 years of caregiver experience to write about and provide caregiving presentations and workshops. Through their site they will offer answers to caregiving questions, along with a list of resources and caregiving books.

CARE - for CareGivers of People with Parkinson's
A novel approach to providing information to caregivers. Information on this site is drawn from the messages that are posted to the CARE (Caregivers Are Really Essential) forums. This is information from people who are who are Caregivers, either directly or indirectly, of people who are living with parkinson's.

Doctor's Guide to Parkinson's Disease Information & Resources
Medical information for patients, or friends and parents of patients, diagnosed with Parkinson's disease. The site contains sections on Medical News and Alerts, Parkinson's Disease Information, Discussion Groups and Newsgroups links to other Related Sites, and a sign up to receive e-mail allowing the individual to stay abreast of Parkinson's disease developments on the Internet.

Drug Watch
The drugs used to treat Parkinson's disease, such as Mirapex, Levodopa, and Requip can have potentially harmful side effects if not monitored closely. Additionally, when these drugs are prescribed in combination with drugs for other disorders, the risks for serious illness or even death increases greatly. Drug Watch is a Web site dedicated to educating the public about the details of prescription and over-the-counter medications, as well as aiding in the protection of patients and consumers by informing them of any associated side effects.

Empowering Caregivers
A spiritual approach to Aging, Caregiving, End-Of-Life Issues. The site features: A free newsletter, frequently updated Caregiving articles, journal exercises created to help caregivers express writing about the issues that challenge tem most, a monthly spotlight on a caregiver of the Month, and a Healing Circle which promotes the power of prayer in large numbers.

Family CareGiving 101
Created by the National Family Caregivers Association and the National Alliance for Caregiving, this web site provides valuable tips to help caregivers self-identify (a critical first step) and gain resources on a variety of topics such as counseling, training, and how to navigate the healthcare maze.

Health Finder - Government Access to Libraries
Healthfinder is a free gateway to reliable consumer health and human services information developed by the U.S. Department of Health and Human Services. Healthfinder can lead you to selected online publications, clearinghouses, databases, web sites, and support and self-help groups, as well as the government agencies and not-for-profit organizations that produce reliable information for the public.

InteliHealth Caregiver Zone
A great caregiver's page — providing tips, articles, coping solutions and more. InteliHealth is a joint venture of Aetna U.S. Healthcare® and Johns Hopkins University and Health System. Established in 1996, InteliHealth has become one of the leading health information companies in the world.

National Library of Medicine
The National Library of Medicine's MEDLINEplus information pages are designed to direct you to resources containing information that will help you research your health questions. They are designed for educational use only and are not intended to replace advice from a health professional.

Medicine Net
A network of U.S. board-certified physician writers and scientists providing in depth medical information for consumers through the interactive web site.

Parkinsons disease Control
Created by Healthology, this site features content created by PD thought leaders and medical experts to provide a full range of information about Parkinson's disease, current treatment options, the latest research, and more. Also, patients and their caregivers offer personal testimonials about how they are able to cope with Parkinson's disease. Parkinsons Control.com features streaming video programs with full text transcripts, which creates a fully interactive experience for anyone seeking information on Parkinson's disease.

Parkinson's Training for Caregivers
The Parkinson's Training for Caregivers project is a free online course developed to train caregivers in caring for those with Parkinson's Disease in long-term care settings.

Parkinson's Unity Walk
The Parkinson's Unity Walk is an event held in New York City in the fall of each year to increase public awareness about PD and raise funds for research.

The Parkinson's Web
A national advisory board oversees this site that includes sections titled: A Parkinson's Primer, Diagnosing Parkinson's, Medical Treatment, Mind and Body, Coping, Support Resources, Recent Research, New Publications, Bibliography, Glossary, Surgical Procedures, Massachusetts General Hospital Neurology Department, Questions, and links to other sites through the Parkinson's Disease Web. There is also a Neurology WebForum sponsored by the Massachusetts General Hospital Neurology Department.

 

Parkinson's disease Care on RemedyFind
RemedyFind is a free, unbiased site (not sponsored by drug companies etc.) where individuals can rate the effectiveness of the Parkinson s Disease treatments they have tried.

U.S. News & World Report Online Guide to Parkinson's disease
US News & World Report and Stanford University Hospital & Clinics have launched a comprehensive guide to Parkinson's disease. Topics covered include eating, exercise, sexual difficulty, sleep disturbances, and coping with depression.

Worldwide Education and Awareness for Movement Disorders
One of the Internet's most comprehensive resources for movement disorder information and the hub of movement disorder activities on the Web. The site's mission is to increase awareness of neurologic movement disorders and make early diagnosis, up-to-date treatment, and patient support a reality for all people living with movement disorders.

Senior Information

American Association of Retired Persons
A nonprofit, nonpartisan association dedicated to shaping and enriching the experience of aging for its members and for all Americans.

www.benefitscheckup.org
BenefitsCheckUp helps find programs for people ages 55 and over that may pay for some of their costs of prescription drugs, health care, utilities, and other essential items or services.

Last Acts
Last Acts is an unprecedented national effort to raise awareness of the need to improve care of the dying and to share issues and ideas at the national, state and local levels.

Guide to Retirement Living
The Guide to Retirement Living Online is the Internet version of the mid-atlantic regional publications, The Guide to Retirement Living. Each edition features a complete listing of all senior residential communities, long-term care facilities, and home care services. The Guide also features objective articles by national experts in the field of aging on issues that affect seniors, caregivers, and professionals.

MyZiva.net
MyZiva.net - The Complete Nursing Home Guide, is a free, objective and easy-to-use nursing home resource for prospective residents, caregivers and healthcare professionals. Help in finding and comparing nursing homes, nationally.

Federal Government Agencies

Health Care Financing Administration
In addition to providing health insurance, HCFA also performs a number of quality-focused activities, including regulation of laboratory testing (CLIA), surveys and certification of health care facilities (including nursing homes, home health agencies, and intermediate care facilities for the mentally retarded), development of coverage policies, and quality-of-care improvement.

Administration on Aging
In response to the growing number of older people and their diverse needs, the Older Americans Act of 1965 as Amended calls for a range of programs that offer services and opportunities for older Americans, especially those at risk of losing their independence. The Act established the Administration on Aging (AoA), an agency of the U.S. Department of Health and Human Services, which is headed by the Assistant Secretary for Aging in the Department.

Social Security Online
Provides information about Benefit Information Publications (retirement, survivors, disability and supplemental security income publications) and how to apply for social security retirement benefits, etc.

Medicare Info for Caregivers
Includes information on navigating throigh Medicare, healthcare services, links to partner organizations that assist caregivers, and personal caregiver anecdotes.

National Institute of Neurological Disorders and Stroke
The NINDS, an agency of the U.S. Federal Government and a component of the National Institutes of Health and the U.S. Public Health Service, is a lead agency for the Congressionally designated Decade of the Brain, and the leading supporter of biomedical research on disorders of the brain and nervous system.

New Medicare Prescription Coverage Information
From the Official U.S. Government Site for People with Medicare, nformation about Medicare prescription drug coverage, what it is, who can get it, when you can get it, how can you get it and why you should get it.

Miscellaneous

American Academy of Neurology
The American Academy of Neurology is a medical specialty society established to advance the art and science of neurology, and thereby promote the best possible care for patients with neurological disorders.

Brainnet.org - Central Nervous System & Brain Disorders Network
This WEB site is devoted to helping people and their caregivers better understand the clinical advances both being studied in the laboratory and those that are available now.

Center for Neurologic Study
The Center for Neurologic Study Home Page is designed to present our current activities on the WWW. CNS is a non profit organization dedicated to research and treatment of neurological diseases. The Center was founded in 1979 with the intent of helping patients and families who have been affected by presently incurable neurologic disease. To accomplish this the Center focused on experimental treatment and patient / family support and education.

Society for Neuroscience
The Society for Neuroscience is the world's largest organization of scientists and physicians dedicated to understanding the brain, spinal cord and peripheral nervous system. Neuroscientists investigate the molecular and cellular levels of the nervous system; the systems within the brain, such as vision and hearing; and behavior produced by the brain. This research provides the basis for understanding the medical fields concerned with treating nervous system disorders.

reply to crazyquilt
cpl.C  

About cpl.C

hello.  iam steve and live in new port richey fl . i served 4 years in the marine corps and  served in the gulf war after that. i spent 13 years working for a local sheriff dept.  10 years ago when 30 y/o i was told i have parkinsons diease so i was pretty much forced into retirement which is about 1400 a month i was collecting social secuity. but last year it was taking away from saying i was able to work.  i do no if you know anything thing about parkinsin but it doesnt get better. since then i pretty mush lost everything .my wife divoced me. no insurance although i do have the va which iam lucky about that but it just so happens i was in the middle of dbs surgrey and lost my insurance. so life is kind of sucking right know . my father has past my mother helps when she can  but she is on social secruity herself. i have a lawyer working on my ssi claim. but that can takes up to 18 ,months so with rent, electric, car insurane medical bills food not to mention i have to daughters that i needto support i need some help.  i have no credit cards so your help would not be going to pay them. just to help me get back on my feet again and my kids .
reply to cpl.C
karen2268  

About karen2268

THIS IS THE PART THAT I FIND TO BE MORE THEN DIFFICULT, FOR THAT, I AM SORRY IN ADVANCE.

MY NAME IS KAREN LYNN BRACY, I AM 41, SINGLE, LIVE ALONE AND FOR THE FIRST TIME IN MY LIFE, I REGRET LIVING AN INDEPENDENT AS WELL AS UNINVOLVED LIFE.

I WAS ADOPTED, AN ONLY CHILD, SOME WOULD SAY SELF SUFFIENT. THE ONLY ONE'S THAT I LET CLOSE ENOUGH, WERE THE ONE'S THAT TAUGHT ME TO GET ATTACHED, IS TO OPEN UP YOUR SELF FOR DISAPPOINTMENT OR WORSE, BETRAYAL.

 IT WAS EASY WHEN I WAS YOUNG. MY FATHER WORKED FOR THE FEDERAL GOVERMENT, WHICH MEANT I NEVER LIVED ANY ONE PLACE LONG ENOUGH TO DEVELOP RELATIONSHIPS. HERE TODAY AND GONE TOMMORROW, WHICH I WAS USED TO.

AT THE AGE OF 32, I SUFFERED A INCOMPLETE C-3 NECK INJURY AS WELL AS SEVERAL VERTABA IN MY BACK WERE CRUSHED. ALONG WITH ANY DESIRE TO LIVE, MY CHANCE OF EVER WALKING AGAIN VANISHED. I WAS TRAPPED IN A HOSPITAL FOR THE BETTER PART OF THE NEXT 5 YEARS HAVING REPEATED BACK SURGERIES. PLEASE DO NOT THINK I ASK FOR SYMPATHY. AT FIRST, I WAS ASKING MYSELF WHO I COULD GET TO FINISH ME OFF.

SO I ALREADY HAD MY OWN PITY PARTY AND I STARTED TO REALIZE THAT EVEN THOUGH I WAS BADLY HURT, PEOPLE RIGHT THERE WITH ME WERE IN ALOT WORSE SHAPE.

I WAS LUCKY IN THE FACT THAT MY NECK REPAIR GAVE ME SOME ARM FUNCTION. MY ROOMATE AT THE TIME WAS ON A VENTILATER TO BREATH, AND HAD NO ABILITY TO MOVE AT ALL. I WOULD SIT BY HER AND TALK, AND HER EYES MIGHT WATER, BUT I WAS THE ONE DRYING OUR TEARS. THREE WEEKS LATER, SHE WAS GONE. I SHOULD HAVE EXPECTED IT, EVERYONE ON THE FLOOR BUT ME DID. SO I REVERSED BACK TO NOT LETTING PEOPLE IN.

I HAD ONE PERSON WHO I CONSIDERED MY ADVOCATE, MY FATHER, WILLIAM M. BRACY. AND I WAS SURE THAT WHATEVER WAS COMING, I WOULD HAVE MY DAD, AND GOD. MY MOTHER IS VERY LOYAL TO HIM, AND SOMEHOW FOUND ME AS A THREAT FOR HIS ATTENTION.

 

MY HERO HAS PARKINSONS. AS WELL AS LYMES AND ALHIMERS IS POSSIBLE. HE IS THREE HOURS AWAY FROM ME AND I HAVEN'T SEEN HIM IN TWO YEARS. IF GOD FORBID, HE PASSED TODAY, I WOULD HAVE  NO WAY TO GO TO HIS SERVICE.

THE SUPPORT I AM ASKING FOR IS ANY. I JUST FEEL LIKE I HAVE NO ONE TO EVEN ASK FOR ADVICE. WORDS HAVE NEVER BEEN EASY FOR ME AND THE ONE I USE NOW IS DESPERATION. HELP. PLEASE HELP. I AM MORE AFRAID NOW, THEN WHEN I COULD NOT MOVE AN INCH. PRAYING, HOPING.  KAREN

reply to karen2268
Sue13  

About Sue13

I would have never belived I coiuld lose my job - and it has happened.  I am scared - more scared than I have ever been because my hubby has Parkinsons, and we are no longer young.  I just need some temp help - our life insurance is getting ready to go down the tubes, we cannot afford the premium, our electric bill is coming in all kinds of different colors, everybody knows what that means - you are going to be disconnected.  I know that I will eventually find work, but if someone could just help with the immediate needs for a couple months, it would be so appreciated.  Looking at maybe 3,000.  Please, somebody help!!!!!!!

reply to Sue13
shaky  

Parkinson's at 38

Hello,

 I'm 38 years old and I have parkinson's disease...I'm currently on clinical trials to try and control my tremors that has really changed my life and my families life.I became unable to work last summer because of uncontrolable shaking and falling.I have however signed up for disability but was turned down even though All my Doctors(6 of them)personally wrote letters of recomendation for my social security disability.We are REALLY having a tough time financially.I have 2 teenage sons that assist me EVERYDAY when they get home from school...They have never once complained.I thank God for them,they are a blessing.I've never had to ask for help until lately,I've always worked hard and provided a way for us.They are in need of shoes/clothes and we need help with light bill and house payment.But most of all we need you're prayers.God bless you all that are in need.

reply to shaky