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NEWS JUST FOR YOU!
If you have any news you want to report CONTACT US and we may include it on our website.
Visit US OFTEN - We Are Always Updating This Page With "New" NEWS JUST FOR YOU!
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| Please note that the content on our website is offered to our readers solely on an informational basis. The Columbia Parkinson's Support Group does not research or investigate further any published articles or stories we have included. We do not provide additional follow-up to verify that they are anything other than interesting to note. We urge you to do your own follow-up on any of the information found in our newsletter. Use caution when "surfing" the internet and any website! |
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APRIL IS PARKINSON'S AWARENESS MONTH!
How you can help create awareness about Parkinson's disease - Below are a few ideas
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Educate Yourself and Others - Read, listen, watch, and learn. Attend support group meetings. Go to your library, or purchase books and literature from bookstores. Surf and use the internet wisely. Talk with others who are in the PD community. Ask questions - Ask questions.
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Support Finding A Cure - Participate in Parkinson's fund raising events and donate your time, talent, and resources. Please investigate and make sure the fund raising event is appropriate for your involvement, and is legitimate.
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Share Your Personal Story - Don't hide it - tell it! Connect on-line and use social media (such as Blogs, Twitter, Facebook, Tumbler, MySpace, YouTube, Web Pages, Flicker, Linkedin, etc.). Share with your community groups, church, clubs, organizations, reunions of all types, family, friends, neighbors, etc. to tell about your own personal story about how Parkinson's disease has affected you; and the effect it has had on you and those you love.
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Support Your Support Group - Help Us To Help You - Volunteer, donate your resources, and attend & participate at meetings
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The Columbia Parkinson's Support Group Is Partnering With USC STUDENTS
PLEASE HELP 2nd TEAM OF USC STUDENTS!
THEY NEED PD SUBJECTS FOR THEIR DEGREE REQUIREMENTS
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J.D. Hammond, who is a senior biomedical engineering student at the University of South Carolina, has contacted us asking us to help him and his team. As part of their program's degree requirements, they are required to complete a senior design capstone project that utilizes a team of engineering students to improve the design of a currently marketed medical device.
JD Hammond's group decided to test and make changes to a device marketed by Great Lakes Neurotechnologies used to monitor the symptoms of Parkinson's disease.
They would like to run additional tests on Parkinson patients ASAP - their project presentation is on April 25th. Yes, they know that the time period is very short!
JD told me that they have had trouble finding participants diagnosed with Parkinson's disease to be subjects, because they did not know of any patients in the area. (This is "not" uncommon for our community to be unaware of Parkinson patients living near them. That is why it is important that we help create Parkinson's awareness not only in April, but also throughout the year!) JD and his team very recently found that there was a Parkinson's support group in the Columbia area. Given that, April is "Parkinson's Awareness Month"; we think helping these students will be an "excellent" way to create PD awareness. This USC engineering student team would appreciative "any help" our support group can provide in the final days of their study.
The tests are non-invasive - they only require the Parkinson's participant to move their hands, and just point to a computer screen. You do not have to have any special or complicated computer skills! The tests take about 20 minutes including time spent filling out an anonymous survey. Below is a link to a YouTube video for you see what a test of this device looks like. We recommend that you watch the YouTube video (even if you don't think you will volunteer).
http://www.youtube.com/watch?v=zXzMb__wJQc
Dottie Gantt says - "CW (Dottie's husband who has PD) and I looked at the video that JD had in his email about the device, and it looks really interesting. Imagine being able to send info to your neurologist about how you are doing with your meds during a whole day, a whole week, etc. One of CW's on-going concerns about dealing with PD, is that when he has an appointment with a neurologist - they only see you for the appointment time - and what they see is determined on when you last took your meds - when you last ate something - when, when, etc. So the neurologist is not really getting a complete picture of what is going on. The neurologist depends on the patient to remember what to tell the Dr. Many patients do not do this. But having a device like the one in the video, that easy to use - "May be a good thing!" as Martha Stewart would say."
All information gathered by the students is confidential. The University Institutional Review Board has approved their project. Having Parkinson's participants to test would greatly enhance their project. They are willing to meet with any participant during the week or on weekends. They can come to your home or you can go to them. If you want to volunteer or want more information, please feel free to call JD Hammond at any time at 843-323-9262 or email JD Hammond at hammonjd@email.sc.edu
Note: As always, our support group tries to assist students in their efforts to learn more or to study about Parkinson's disease. They are our future medical providers. AND - After all it is Parkinson's Awareness Month. Help us create awareness!
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The Columbia Parkinson's Support Group Is Also Partnering With USC STUDENTS
Working On Their Master's Of Healthcare Administration
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The Columbia Parkinson's Support Group welcomes partnering and working with any medical students who have an interest in Parkinson's Disease. Currently we are partnering with a team of University of South Carolina students working on their MHA (Master's of Healthcare Administration) program. Eric Rebraca, a member of the team has been coordinating the interface between our support group and the team.
As part of the MHA program, USC MHA students are divided into teams and assigned to a "professional advisor" for a project. Their team has been assigned to Palmetto Baptist Nuclear Medicine Department, and they are working with Director Jack Morris and Kathi Knight (Palmetto Health Baptist Nuclear Medical Department) in promoting the awareness of the new Palmetto Baptist DAT Scan/SPECT CT Camera for aiding in the diagnosing of Parkinson's disease.
The team's primary goals are to Increase awareness in the Midlands region of Parkinson's -and- to Increase physician awareness of the new SPECT Camera available in August.
The team would also like to record a short 2-4 minutes video that emphasizes the ease of a DAT Scan/SPECT CT Camera from the patient standpoint. They also plan on having a brief interview with a respected physician (Dr. Faber) who understands the value of DAT Scan/SPECT Ct Camera, and Parkinson Awareness.
We look forward to working with the USC MHA Team! Stay tuned for the results of their project...
We encourage all students who have an interest in Parkinson's disease to join us at our meetings; and to contact us if we can assist them in any way.
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President Obama Announces A $100 Million Initiative To Map Human Brain
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Published on Apr 2, 2013 on YouTube, a video of President Barack Obama unveiled the BRAIN Initiative, a new collaborative effort to map the human brain and better understand how it works. BRAIN stands for Brain Research through Advancing Innovative Neurotechnologies. Using new neurotechnology, scientists will be able to understand how activity in specific cells in the brain affect behavior. To watch this video click here http://www.youtube.com/watch?v=Ol4SUlpXxXc
Article From "Time - Health & Family" By Maia Szalavitz "President Obama has proposed a Brain Activity Map (BAM) project to reveal some of these remaining secrets, using the Human Genome Project as a model. Not all scientists, however, are on board..." This article has additional information about brain research, etc. Read more here http://tinyurl.com/bcbs62l
Article from the Northwest Parkinson's Foundation web site.
Reported in the Seattle Times by James Gormanjohn Markoff - "President Obama on Tuesday will announce a broad new research initiative, starting with $100 million in 2014, to invent and refine new technologies to understand the human brain, senior administration officials said Monday.
A senior administration scientist compared the new initiative to the Human Genome Project, in that it is directed at a problem that has seemed insoluble up to now: the recording and mapping of brain circuits in action in an effort to “show how millions of brain cells interact.”
To read more of this article click here http://www.nwpf.org/News.aspx?Item=4244
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Congratulations To Our Very Own
"Carolina (SC) Cruisers" Walk-A-Ton Team!
[Photos from cruise furnished by Ellen and John Menzo]
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Holland America’s ship, the MS Westerdam. |
Bella and Gil Valena
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Bella and Gil Valena
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John Menzo and new friend
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Rich London and his wife on left
Ellen and John in the middle
and Carl Robb (one of the presenters) on the right
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Gretchen Church in the wheelchair being pushed by her husband, Michael. Gretchen coordinated the "Stroll and Sea" walk-a-thon.
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 John and Ellen Menzo
Bella and Gil Valena
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Our "Carolina (SC) Cruisers" team has raised a total of $465 in donation pledges for our support group. The team participated in the "Stroll At Sea For PD" walk-a-ton on the special Parkinson Awareness Cruise 2013 (arranged for Parkinson patients and their caregivers). The "Stroll At Sea For PD" walk-a-ton took place aboard Holland America’s mid-size ship, the MS Westerdam.
YOU CAN STILL RAISE MONEY FOR THE COLUMBIA PARKINSON'S SUPPORT GROUP -- DONATE
YOUR PLEDGE TO TEAM "COLUMBIA (SC) CRUISERS" Your pledge will be tax deductible and you can double your pledge, because it will be "matched" by the travel agency even if you did not go cruising. Make your pledges to the team "Carolina (SC) Cruisers", The "Carolina (SC) Cruisers" team members are from our support group on this cruise who walked and strolled around the ship during the special onboard walk-a-thon, called “Stroll At Sea for PD” to raise money for our very own Columbia Parkinson's Support Group. Note: Do not forget to add "SC" to the name "Carolina (SC) Cruisers" when you pledge and donate -- because there are two groups named "Carolina Cruisers".
Thank you! Ellen and John Menzo for walking, and for coordinating the Columbia Parkinson's Support Group donations! To learn more about making a donation pledge to the "Carolina (SC) Cruisers" walk-a-ton team, Ellen Menzo can be contacted at embus8@bellsouth.net or telephone 803-364-7334
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SC PD Community Represented
At
2013 PAN (Parkinson's Action Network)
Forum
February 25-27, 2013
Washington Plaza Hotel
Washington, DC
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Photo furnished by Adrienne O'Neil
Left to Right
Jim Bremner, Lisa Cox, Cindy Carr, Adrienne O'Neil,
and Michelle Morton Reed
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The PAN Forum is a three-day conference held in Washington, D.C., bringing together Parkinson’s advocates from across the nation. Attendees gather to learn the latest in public policy and research in Parkinson’s disease. Working together, Forum attendees increase awareness of Parkinson’s and learn to advocate for better treatments and a cure.
What is PAN? "We are the unified voice of the Parkinson’s community advocating for better treatments and a cure. In partnership with other Parkinson’s organizations and our powerful grassroots network, we educate the public and government leaders on better policies for research and an improved quality of life for people living with Parkinson’s."
To learn more about PAN click here
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" PAN advocates work in their states and local communities every day. Attending support groups, speaking at schools, colleges, and universities, and contacting their Members of Congress are but a few of their actions in support of the entire community. PAN has Grassroots leaders across the country working to lead local advocates. The leaders, all volunteers working for a cure on their own time, work closely with their Members of Congress and spread the message of Parkinson’s disease issues to their local communities. Assistant State Directors and District Delegates work in their Congressional Districts, while State Directors work state-wide to facilitate the advocacy network in the entire state. These advocates work tirelessly, giving feedback and information to PAN staff in Washington, DC, and working to ensure a seamless message across the nation." For more information about PAN advocacy click here
You can become a PAN advocate. Click here to obtain training materials |
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Very Important Change In
Medicare Coverage of Outpatient Physical, Occupational and Speech Therapy!
(Which Includes Parkinson Patients Care)
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Summary --- After a recent settlement of a class action lawsuit, Medicare will begin paying more often for therapy for those with disabilities and chronic conditions, including Alzheimer's and Parkinson's disease. The settlement ends Medicare's practice of requiring that patients show improvement for their treatment to be covered - which was a generally impossible standard for people with degenerative diseases. Medicare is also revising its policies to ensure that in-home, nursing home and out-patient coverage in such cases is available.
The information provided below is from the Medicare web site.
"Medicare covers therapy services that help you maintain your ability to function. Medicare also covers therapy services that prevent you from getting worse or that slow worsening symptoms. If you meet the requirements below, Medicare should cover your outpatient therapy whether or not your condition is temporary or chronic and whether or not you need therapy to improve or maintain your ability to function.
Medicare will cover outpatient physical, occupational, and speech pathology services if:
- You need therapy and it is considered a safe and effective treatment for you
- This means that you need the technical skills that a trained therapist can provide or oversee
- The therapist must perform the services or direct the staff who perform the services
- Your doctor or therapist sets up the plan of treatment before you get care
- Your doctor regularly reviews the plan of treatment to see if changes are needed"
Please click here to read the full article
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Michael J. Fox Is Back With a New 2013 Fall TV Show and Feelin' Alright After 20+ Years With Parkinson’s
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| Michael J. Fox will star in an NBC sitcom this fall in 2013 loosely based on the lighter side of his life with Parkinson's disease. — Jeff Lipsky |
"Technically, Michael J. Fox is not supposed to be enjoying himself as much as he is these days. When the actor was diagnosed with young-onset Parkinson's disease at age 30 after noticing a twitch in his left pinkie, his doctors told him he had 10 more years to work, tops. That was 21 years ago." "The implication was that I was going to be in an invalid state," Fox says.
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Fox's new NBC comedy series, coming this fall, in which he'll play a New York anchorman, husband and father of three whose family and career are shaken up by Parkinson's, is loosely based on the lighter side of life with the disease. That's not to suggest that PD is one big thigh-slapper."
The actor, 51, gets by — even thrives — with a little luck, a lot of love and lots of laughs by David Hochman, AARP The Magazine, April/May 2013
Click here to read the full story
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The October 2012 - May 2013 Flu / Influenza Season
Have you had your 2012 - 2013 Flu shot yet?
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Ask your doctor if you are at risk and
Should you have the Flu Shot and
What kind of flu shot (regular or high-octane) |
"Each year, people age 65 and older have the highest rates of influenza-related deaths and hospitalizations, according to the Centers of Disease Control and Prevention (CDC). The season "generally" runs from October through May. If you are over 65, you have two options - the regular-strength flu shot or a higher-octane vaccine to combat age-related weakening of the immune system. Called Fluzone High-Dose, this pumped-up version contains four times the amount of antigen, intended to create a stronger immune response. Your health care provider can help you decide which dosage is better for you. Medicare and Medicaid cover both vaccines. Many drugstores and grocery chains also provide the shots." Information from the October 2012 AARP Bulletin
To find locations near you that are providing flu shots go to http://flushot.healthmap.org/ All you will need to do is provide your zip code and the website will list all the locations in your area.
Below are links from the Centers for Disease Control and Prevention (CDC) for information about Flu / Influenza
Click here to learn what you should know about Flu / Influenza
Click here for some key facts you should know.
It can cause mild to severe illness, and at times can lead to death. Some people, such as older people, young children, and people with certain health conditions, are at high risk for serious flu complications. The best way to prevent the flu is by getting vaccinated each year.
The upcoming season's flu vaccine will protect against the three influenza viruses that research indicates will be most common during the season. This includes an influenza A (H1N1) virus, an influenza A (H3N2) virus, and an influenza B virus.
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Neurology Now Magazine - An Excellent FREE Resource |
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The December 2012 / January 2013 (Vol 8 - Issue 6) Neurology Now magazine has several excellent articles about Parkinson's Disease.
"Navigating Life With Parkinson Disease" is a book that describes the causes, symptoms, treatments, and complications of PD and suggests ways to manage the condition. The book is available from Oxford University Press (oup.com), Amazon.com, and through local booksellers. Here is a sample excerpt from the book http://tinyurl.com/cgdpeov
Article on "Not Just Tremor: Recognizing depression and other non-motor symptoms of Parkinson's disease" by Tom Valeo -- Excerpt from this article "PD also causes an array of non-motor problems. These symptoms may elude detection by doctors and even by patients themselves. Many of these symptoms seem to affect the mind more than the body; in reality, they illustrate the intimate connection between the mind and the body. For example, depression, anxiety, irritability, and social withdrawal are all recognized now as non-motor symptoms of PD. Experts believe they are caused not by the person's reactions to having PD but by the disease itself and how it changes the physical brain." Click on this link to read more on this topic
Another article that was informative is "Be Prepared!: How to make the most of office time with your neurologist" by Avitzur, Orly M.D., M.B.A. Excerpt from the article "Since you may have to wait longer these days to get seen for a shorter period of time, making the most of your office visit is critical. That means arriving prepared to your first visit so that office staff won't waste a moment searching for results or reschedule you because vital information is missing and needs to be tracked down." Click on this link to read more on this topic
The paper version of "Neurology Now" magazine is FREE to those with Parkinson's disease or their caregivers. Visit their website and click on the subscription link.
Neurology Now magazine is now available for iPads - FREE - The Apple app is free, and you can download it today. On your iPad home screen, open the Apple App Store icon and search for “Neurology Now.” Tap “Free” to install the app on your iPad, and then download the issues. Prompts in the app library will let you know when each new issue is available.
For more books, periodicals, magazines with Parkinson's resource information click here
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| To reduce drug errors, Parkinson's patients are educating hospitals |
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"Hy Carpenter must take his medication for Parkinson's disease six times a day in three-hour intervals."
"If he's late in taking a dose -- even by a few minutes -- the 73-year-old St. Paul man can experience "freezing," as his legs slow to the point where he can't keep walking."
"Avoiding such problems can be especially difficult for Parkinson's patients during a stay at a hospital or nursing home, where they can encounter yet another medication risk...." Taken from article on Northwest Parkinson's Foundation website
To read the rest of this important article on PD patients visiting hospitals click here http://www.nwpf.org/News.aspx?Item=4153
For more information about the Aware In Care program click here We strongly encourage all PD patients to obtain the FREE Aware In Care kit!
For more information about drugs & medications click here
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Five Things Patients Should Question by The American Academy of Neurology (AAN)
AAN Choosing Wisely List Affects Headaches, Fainting, Migraine, Multiple Sclerosis, Stroke
The American Academy of Neurology, in participation with the American Board of Internal Medicine (ABIM) Foundation and Consumer Reports, announced its list of top five questionable tests, procedures, and treatments for patients and physicians to consider in a news conference today.
View the AAN’s list.
Patients are encouraged to talk about this list with your neurologist or physician to determine the most effective means of testing and treatment. The Choosing Wisely campaign encourages patients and physicians to talk about the overuse of particular tests, procedures, and treatments and to help patients make smart and effective care choices.
Learn more about Choosing Wisely
For more information about doctors and hospital care click here
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Young Onset Parkinson's Disease Handbook
"If you are young and have Parkinson's disease, you and your family are likely to have numerous questions. How will Parkinson's affect you and those you care about, and how might you have an impact on it? The American Parkinson Disease Association (APDA) and our National Young Onset Center are here to provide you with the education and support you need in order to make important decisions about your health and your life."
"To answer many of your questions, were are pleased to make our Young Parkinson's Handbook available to you at no cost. Since our founding in 1961, APDA has been diligently working to "Ease the Burden -- Find a Cure" for Parkinson’s disease through research, patient and family support, and education."
The above is taken from the American Parkinson Disease Association (APDA) website at this link http://tinyurl.com/c5hzp3n where you can obtain the handbook.
For other reading material we recommend click here
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Videos From The Doctor's TV Show - Topics On "Parkinson's Disease"
CBS TV Network has THE DOCTORS -- a one-hour, daytime talk show delivering up-to-the-minute information from a panel of four practicing medical professionals in a compelling and entertaining format five days a week. Below are video links to different episodes where they have discussed Parkinson's Disease.
Diagnosed with Parkinson's At age 49, Suzanne noticed her thumb was twitching while she was watching television. She consulted her doctor and was diagnosed with Parkinson’s disease --
THE DOCTORS Examine A Parkinson's Surgical Procedure ... The DOCTORS examine a DBS Parkinson's surgical procedure
Deep-Brain Stimulation Surgery Watch as Suzanne undergoes deep-brain stimulation to control the symptoms of Parkinson’s disease. NOTE: This video may not be appropriate for young viewers - It does show a DBS surgery on the brain.
Deep-Brain Stimulation Results Suzanne and neurosurgeon Dr. Parag Patil join The Doctors to show how deep-brain stimulation improved Suzanne's symptoms of Parkinson's disease.
Muhammad Ali's Daughter Shares About Her Father and Parkinson's May May Ali, daughter of legendary boxer Muhammad Ali, joins The Doctors to share how her family is championing Parkinson's disease research.
Thanks to Kay and Michelle for submitting the DOCTORS TV Show as a resource!
For more videos about Parkinson's and related to Parkinson's resources found on the internet click here
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23andMe --- You Can Help Find A Cure For PD --- Your "Spit" Is Needed! --- Yes, You Read That Right - "Spit"
Do you want to learn more about yourself, your ancestry, and your health for FREE? Join now The 23andMe Parkinson's Disease Research Initiative - Supported by both the Muhammad Ali & Michael J. Fox
Foundations
"Take an active role in groundbreaking research by mailing in your DNA sample and answering surveys online. Over
10,000 people with Parkinson's have come together to form what is now the largest Parkinson's community for genetic
research in the world. This group is already powering research breakthroughs - they have found two new genes
associated with Parkinson's." Quote from the 23andMe website
Are you eligible? You must be - Diagnosed with Parkinson's disease by a physician - Able to access the internet - and
Willing to complete online health surveys. Learn more at www.23andme.com/pd Have questions about participating in
this research? Email pd-help@23andme.com
How it works: Fill out a form on this page https://www.23andme.com/pd/codereq/ --- Order your FREE kit --- DNA kit
arrives in the mail --- Spit and send in sample --- Fill out online surveys --- See your genetic results for health and ancestry
--- Help 23andMe scientists make discoveries --- 23andMe alerts you to Parkinson's discoveries and how they apply to
you. Your personal information and results will be kept private!
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Caregivers & Care Partners - Do You Need A Break or Time Away From Caregiving?
You May Qualify For A Respite Care Voucher Program That Can Provide Up To $500 Per Year
The South Carolina Alzheimer's Chapter provides short-term respite -- time away from caregiving responsibility--for full time
family caregivers. This caregiver respite voucher program for up to $500 worth of care available each year. This
program is possible thanks to funding through the SC Department of Mental Health.
This program also applies to Parkinson caregivers too!
With a respite voucher, family members are able to arrange care through approved home care agencies, adult day care,
or temporary placement in a long term care facility. The approved agency or facility will bill the association for up to $500
worth of services. The respite program is not designed to pay for services on a long-term basis and may not be applied
retroactively. The voucher may not be used for private sitters.
Go to http://www.alz.org/sc/in_my_community_10485.asp
– for more information about how to apply
– for the form to apply for the voucher
– for information about voucher renewal eligibility
– and for information about caregiver stress
For more information about caregivers and caregiving click here
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Got Questions About Medicare?
For example: How can I find doctors, providers, hospitals, facilities, plans & suppliers in my area? How can I find out if
my medical test, medical item / product, or service will be covered by Medicare? They have answers to many more
questions on this website. http://medicare.gov/
For more information about US Government, SC Government, and other types of government services click here
For a list of doctors and medical providers as recommended by our support group members click here
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Frustrated With How Congress and The Senate Are Running Our Government?
Learn -or- Refresh Your Knowledge About Our Government On A Fun-And-Easy To Use Website
(Note: This information is being presented "not" to represent or support any particular political party.)
Why should you be interested in how our government operates, because there are current events happening every day that affect you, your life, your health, your finances, and those you love. Have you ever wondered how the Supreme Court really works? Want to learn more about the 3 branches (Executive, Legislative, Judicial) of our government? Want to learn about how laws are created?
This website will show you how our government is supposed to work; then you can make informed decisions when voting, and when choosing those you want to represent you. Retired US Supreme Court Justice Sandra Day O'Connor initiated this website http://www.icivics.org/ to help schools inform & teach students about our US government. You are never too old to learn things that are fascinating, things you have forgotten, and things you never learned in school about our government.
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LISTEN - WATCH - LEARN --- |
Watch one of PDF's more than 30 online seminars on a wide variety of PD topics for free on this website http://www.pdf.org/en/pd_online_education
All events/seminars are available for you to view from the comfort of your own home, 24 hours a day, seven days a week. You can learn more about Parkinson’s symptoms, progression, treatments, and management. Whether you are a person touched by Parkinson's disease or a health care professional, they have a course for you. Join live or watch recorded seminars on their website at anytime.
For more videos about Parkinson's and related to Parkinson's resources found on the internet click here
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Beware of Buying Drugs Online |
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Online drug purchases may be convenient and economical. Online drug purchases can come with risks. Online drug purchases can be contaminated or the wrong active ingredients. Visit the U.S. Food and Drug Administration new website at http://tinyurl.com/8tqkd8t for more information
For more information about drugs and medications click here
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Do You Know How To Get The Most Out Of Your Next Doctor Appointment?
Your time with your doctor is limited. Make sure every minute counts. Below are just a few tips to help you make your appointment with your doctor a very effective one.
Before the appointment - Write down your list of questions or concerns you have about your health. Put the most important items at the top of your list to make sure you get them answered. Have a list of your medications / prescriptions, any herbs or vitamins, and any over-the-counter items that you are taking. Give a copy of the list to your doctor. You may want to bring the bottles of all your prescription medications with you - often the doctor will want to look at the medication, the dosage, when the Rx was last filled, etc.
During the appointment - Speak up! If you don't understand what is being said, ask questions and/or ask them to repeat. Take notes during the meeting. Better yet, bring someone with you (friend, family member, etc.) to take notes. You may be so focused on what you want to discuss or what the doctor is telling you that you forget to take notes. Also, sometimes we may hear what we want to hear, and having someone else to take notes will give you a better understanding of your visit.
At the end of the appointment - Ask for written instructions if your doctor writes a prescription or wants you to do something at home.
After the appointment - If you still have questions, call your doctor's office. Ask to talk with his nurse, or leave a message to have your doctor call you back.
Remember - It is your life and you need to be responsible for your medical treatment!
For more information about doctors and hospital care click here
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Do You Know About Your Wellness Exam and Shots?
Under Medicare Part B, you are now covered for a "wellness exam" every year. Make sure that you schedule one with your doctor each year. Contact Social Security / Medicare for more information.
If you are over 60 years of age, you should have a pneumonia and shingles shot - in addition to your yearly flu shot. Be sure to talk with your doctor about these shots and if/when you should have them.
For more information about doctors and hospital care click here
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IMPORTANT
SC Lt. Governor's Office On Aging - Special News Announcement!
PROTECT YOUR CREDIT AND ASSETS |
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The following is from AARP Bulletin January/February and the protectmyid.com/scdor website.
The SC Department of Revenue was recently"cyber attacked", and personal data of 3.8 million citizens and 650,00 business of South Carolina was stolen (e.g., Social Security Numbers, Bank Account Numbers, etc.). The state is offering a free year of credit monitoring to South Carolinians.
To enroll for a free year of credit monitoring, go to protectmyid.com/scdor or call 866-578-5422 toll-free by January 31, 2013, and use the code SCDOR123. Also South Carolinians can contact the three major credit agencies to place a free security freeze on their credit reports.
Go to protectmyid.com/scdor or call 866-578-5422 toll-free
The following information is from the SC Lt. Governor's Office on Aging.
As a result, the SC Lt. Governor's Office on Aging has provided resources on their website to help Seniors regarding Identity Protection Services.
Through the Lt. Governor's Aging network, there is an easier process for seniors now established, where they can sign up for the stolen identity protection service the Governor's office has put into place as the result of taxpayer social security numbers and credit card numbers being stolen from the S.C. Department of Revenue. This process is supposed to assist seniors who do not have the ability to access computers.
Please be reminded that no one in an official capacity will ask for personal data through an unsolicited call. The Governor's office reminds seniors that once they provide the information, as set out in the instructions on the Lt. Governor's Office on Aging, they should not give out personal information to anyone calling their homes. The Lt. Governor's Office and the Governor's Office will continue to monitor this situation and will alert you as we are notified of additional information that needs to be distributed.
Visit the website for the SC Lt. Governor's Office on Aging at the following link for more information http://aging.sc.gov/Pages/default.aspx
For the latest information on how to protect your Identity following the Cyber Attack of the South Carolina Department of Revenue, click here.
Assistance for SENIORS in Accessing Identity Protection Services: http://aging.sc.gov/Pages/default.aspx
For more information about US Government, SC Government, and other types of government services click here
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"So Long, Paper Social Security, VA or Other Federal Benefit Checks In The Mail Box" --- Bye, Bye
Information below is taken from an article in the "AARP Bulletin January-February 2013" and from the" GoDirect.org website"
Are you getting Social Security, VA or other federal benefits by paper check? You are required by the U.S. Department of the Treasury to switch to electronic payments by March 1, 2013.
Starting March 1st, a new regulation requires almost all recipients of federal benefits to receive payments electronically. Payments will be accessible through direct deposit or a Direct Express® prepaid debit card. If you do not choose an electronic payment option by March 1, 2013, you may receive your payments via the Direct Express® card.
To sign up for direct deposit, go to GoDirect.org or call 800-333-1795
For more information about US Government, SC Government, and other types of government services click here
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PD PATIENTS' SURGERY MAY CONFILICT WITH MEDICATION
[Note - We suggest that everyone read this article. You may not think you are going to have surgery, but you never know. This is an excellent article!]
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The full article may be found on the Northwest Parkinson's Foundation website
http://www.nwpf.org/News.aspx?Item=4189
"Clinicians should carefully consider the scheduling of surgery for Parkinson’s disease patients to ensure optimal treatment with carbidopa-levodopa (Sinemet), the "gold-standard treatment" for PD, according to a study."
"Researchers with the University of Minnesota School of Nursing and the university’s medical school conducted a study to establish clear guidelines regarding perioperative symptom management in PD patients, who may miss several doses of carbidopa-levodopa when put on NPO (nil per os, or nothing-by-mouth) status for surgery. "
"One concern with carbidopa-levodopa is its short, one-to-two-hour half-life, requiring dosing several times per day," the researchers wrote in the January issue of the American Journal of Nursing"
"Moreover, because of wide variability in patients’ responses to this and other anti parkinson medications, individual regimens may be quite complex. Some regimens require frequent administration, alternating short-acting and sustained-release doses of carbidopa-levodopa. The complex medication regimens are of particular concern when a patient with Parkinson’s disease must remain on NPO status for several hours postoperatively."
The full article may be found on the Northwest Parkinson's Foundation website
http://www.nwpf.org/News.aspx?Item=4189
For more information about drugs and medications click here
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Some Websites You May Find Interesting
and / or
Informative
Reminder - "ALWAYS" use caution
when using the internet and
when using information from any website!
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First Remember --- The Good, The Bad, and The Ugly About Websites
The Good - The internet has excellent resources for providing education and information about Parkinson's disease.
The Bad - The internet has resources that can provide incorrect and misleading information about Parkinson's disease..
The Ugly - The internet has websites that prey on desperate patients of chronic diseases like PD. These websites may promise that they have products or techniques to "prevent" PD and/or to "stop" the progression of PD.
Note: For those of you with Android Tablets & Android Phones or iPads & iPhones - some of the following links can be downloaded as apps for both types - try and see if they are available - some of the apps are FREE
PDPlan4Life - www.PDPlan4Life.org
This website was created by two women who were diagnosed with Young Onset Parkinson's. To give you an idea of the type of information & articles on this website is the article entitled "Ten Things I Wish I Knew When I Was Diagnosed". Visit this Site Map to see the various topics about PD that they cover www.pdplan4life.com/pdplan4life-site-map.htm
How to Get Reliable Medical Information on the Internet Without Turning Into a Hypochondriac by Alan Henry http://lifehacker.com/5946540/
Medpedia - An open platform connecting people and information to advance medicine http://www.medpedia.com/
HealthFinder.gov - Your Source for Reliable Health Information - http://healthfinder.gov/
TED TALKS - Great talks/lectures to stir your curiosity. Browse by subject, length, or rating (inspiring, jaw-dropping, funny…)- Many of these talks were given by professors, scientists, medical doctors, researchers, etc. At the top of the TED page there are links to other types of TED information. http://www.ted.com/talks If you do a search on "Parkinson", you will find a wealth of information.
PocketPharmacist - Drug Information and Medication Organizer By Danike, Inc.
- This resource can be found as an Apple app (for iPad and iPhone) from the Apple Store -and- it also can be found on the Google Play Store (for Androids). It is very good for finding about any
https://itunes.apple.com/us/app/pocketpharmacist-drug-information/id387365379?mt=8
Parkinson’s Resource Center of Spokane! While this website is based in Spokane, Washington it has some very good resource information on it. http://www.spokaneparkinsons.org/
Pharmacy Advocates, LLC - Parkinson's Category - "At Pharmacy Advocates, LLC, we do just that: advocate for the proper and safe use of medicines. Our Mission is to promote the safe and proper use of medications in older adults through diligent pharmacy review and education of clients, caregivers, and healthcare providers. We specialize in medication use in older adults and understand the unique considerations that must be in place when treating this population. If you’re concerned about your or a loved one’s medications or think you could benefit from a medication check-up, click the “Our Services” tab for more information about our services." http://www.pharmacyadvocates.com/category/parkinsons/
Medscape.com - Note: for this site, you will have to create a login and a password - other than that it is free - it can be found on the Apple Store as an app - not sure about Android on Google Play, but it never hurts to look - http://search.medscape.com/news-search?newSearchHeader=1&queryText=parkinson
X-Plain Parkinson's Disease - Reference Summary - This is a PDF document published by NIH (National Institute of Health) about Parkinson's - http://www.nlm.nih.gov/medlineplus/tutorials/parkinsonsdisease/nr039105.pdf
Parkinson's Disease Foundation - Over-the-Counter Medications - An article on OTC Medications - http://www.pdf.org/parkinson_otc_meds
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Aware In Care Program --- You, Parkinson's and Hospitalization
Our support group STRONGLY ENCOURAGES you to learn about this program and order your FREE kit today! |
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Aware in Care Kit -- Get a "FREE" kit today. Know the Facts. Be Aware in Care.
Hospitalization: An Action Plan to be Aware in Care Did you know that people with Parkinson's are hospitalized more often than people without it and also experience more avoidable complications?
NPF wants to help you or your loved one with Parkinson's get the best care possible during a hospital stay. The best way to avoid complications in the hospital is to be prepared. Aware in Care is here to help. Each kit includes tools and information to help plan for the next hospital stay—whether it is a planned visit or an emergency.
The NPF "Aware in Care" kit has tools and information to help a person with Parkinson's prepare for a hospital visit. One kit per person please. Item on BACKORDER, expected delivery June 2012. To order a kit click here
To learn more about the Aware in Care campaign, please visit www.awareincare.org
For more information about doctors and hospital care click here
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We Have Added A New Book To Our Book List
"Shaking Up Parkinson Disease: Fighting Like a Tiger, Thinking Like a Fox" [ Available in Paperback] by Dr. Abraham Lieberman -- This book explains Parkinson's disease--how it's recognized, what causes it, who gets it, when and how to get help, and much more. Available on Amazon at a very low price.
One review of this book - "This book explains Parkinson's disease--how it's recognized, what causes it, who gets it, when and how to get help, and much more."
Don't forget to visit our web page on "Books & Publications Library" at http://www.columbiaparkinsonsupportgroup.org/books.htm
Note: If you have any books that you would like to recommend to our support group, please email them to us contact@columbiaparkinsonsupportgroup.org
For other reading material we recommend click here
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FREE NEWSLETTER! |
The Parkinson's Disease Foundation has a "very good" FREE newsletter called the NEWS & REVIEW that comes out quarterly. The articles are timely, informative, and interesting. You can go to this link http://www.pdf.org/en/pdf_newsletter and sign up to receive this FREE newsletter.
In the current Fall 2012 issue there are two very good articles - "Driving and Parkinson's: Balancing Independence with Safety" and "Going to the Hospital With Parkinson's: How to Be Prepared".
The "hospital" article has a list of things that you need to take to the Emergency Room or to the Hospital. Many of the items listed are already available in the "AWARENESS IN CARE" FREE kit that you can order. Click here to read how you can order this FREE KIT.
For other reading material we recommend click here
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Test Your Knowledge About Parkinson's - Answer "True" or "False"
#1 - Parkinson's disease is an uncommon disorder
#2 - Parkinson's disease presents only in the elderly
#3 - The first physical symptoms of PD reflect early disease
#4 - PD manifests as only physical symptoms and signs
#5 - PD is the only form of parkinsonism
#6 - Not treating PD symptoms at the time of diagnosis improves the quality of life of the PD patient
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#7 - Motor complications in PD happen late in the disease
#8 - Motor complications in PD are only physical in nature
#9 - DBS Surgery is for end-state PD patients with no other options
#10 - There are no opportunities to contribute to ongoing research in PD
#11 - Support Groups do not help Parkinson patients and their caregivers / care partners
Click here to find out how many answers you have right |
Micrographia prevalent in Parkinson’s
Micrographia is abnormally small, cramped handwriting and/or the progression to continually smaller handwriting. This is one of the symptoms of Parkinson's disease. O'Sullivan and Schmitz describe it as an abnormally small handwriting that is difficult to read.
From NWPDF by Andrew Czyzewski
"Around half of patients with Parkinson's disease (PD) display symptoms of micrographia, a case-control study shows. Notably, micrographia correlated with disease severity, cognitive impairment, bradykinesia, and hypophonia "suggesting a possible overlap in their pathophysiology..." Click here to read more of this article
For more non-motor resource information click here
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Important Information For DBS Patients In The Midlands of SC!
Michelle Morton-Reed of Medtronic, Inc. has said that if DBS Patients in the midlands of South Carolina cannot reach their DBS neurologist during an emergency, and they need to have their neuro-stimulators reset or turned-on, to please feel free to contact her at any time - 24/7. An example of a situation where you would do this is - if you have to go to an ER, and the ER staff needs to turn-off or turn-on your neuro-stimulators for a medical procedure, and your DBS neurologist cannot be reached, feel free to call Michelle.
Michelle is a DBS neuromodulation expert who has been trained to work with neurologists, neuro-surgeons, DBS patients, and their neuro-stimulators. Michelle has also volunteered to answer via email any questions you may have about your neuro-stimulators or the DBS procedure.
Special Note: Each and every time you have your neuro-stimulators adjusted (during your DBS tuning procedure), ask your neurologist doctor what your specific DBS settings are for both the right side and the left side stimulator. This is important information that you need to carry with you at all times, and to have listed with your medical information (for example your medical alert bracelet or necklace).
Michelle Morton-Reed
Therapy Representative - Deep Brain Stimulation (DBS)
Medtronic, Inc. - Neuromodulation
Cell 803-587-9681
Email michelle.morton@medtronic.com
For more resource information about DBS (Deep Brain Stimulation) click here
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USB (Digital) Medical ID Bracelet - A new type of medical alert device
The newest type of medical alert bracelet or necklace is a USB (Universal Serial Bus) Digital Medical ID Bracelet. This can be a useful choice for people with difficult medical conditions. Paramedics, doctors, nurses, emergency responders, and even police are trained to look for medical bracelets in case of emergencies. Some types of these medical alert bracelets allow for 6 short, simple pages of information, wherein you can enter your personal information, such as your medical history, allergies, surgical history, medications, and more - and others allow for storage of more information. Most come with a software wizard for your convenience in entering your medical data. Some of the USB drives feature being waterproof and shock-resistant, so that the Digital Medical ID Bracelet will retain all your information even in hostile situations/conditions.
Note that there are many different styles from necklaces, bracelets, etc. (i.e.,
made of stainless steel and features an expansion band for wearing comfort). Prices can range from $20 and up --- "some" places where you might find this type of medical id are - Walmart - Amazon - Target - Walgreens - and there are other places. We suggest you shop wisely by searching around on the internet - compare prices and capabilities.
For more general health resource information click here
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Don’t flush
Don’t pour it down the drain
Don't throw it in your trash |
Rx and You
Do You Know The Proper Disposal of Unwanted Medicine? |
What’s the problem? Unwanted and expired medicine may be a risk to your health, others health, and the environment if disposed of improperly. Traditionally, expired or unwanted prescriptions or over-the-counter medicine from households were disposed of by flushing them down the toilet, pouring them down the drain, or throwing them in the trash. DO NOT FLUSH! This method of disposal is now discouraged.
The S.C. Department of Health and Environmental Control (SC DHEC) has an excellent PDF document on how to dispose of all types of medications - including needles, syringes and lancets (or “sharps”).
We recommend reading this document and perhaps printing a copy for your home. Click here to read this PDF document
For more information about Drugs and Medications click here
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Electricity Power Outages -and- Special Medical Needs?
If you are a South Carolina Mid-Carolina Electric Co-op residential member and you have a health problem requiring special medical needs - contact your MCEC office as soon as possible to obtain a "Special Needs Account Member Arrangement" form. This is to register with MCEC your medical problems and that you need high priority assistance when there are electrical power outages.
Residential member-owners with such conditions will be required to secure the signature of a licensed health care provider on the form and return it to the cooperative.
If you have questions, please call 1-803-749-6400 or 1-88-813-8000.
Note: If you are "not" a MCEC customer, you may want to check with your own electricity provider to see if they have a similar program.
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Did you know?
The number of neurons in the human brain = 100 Billion
The number of neurons needed to form a new memory = 1
The percentage of brain we use = 100% [10% is a myth]
From AARP magazine May/June 2011
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Get Some Sleep: When people act out their dreams
By Lisa Shives, M.D.
CNN Health - "The second time Charlie was awakened by his wife’s screams because he was slapping her in his sleep, he decided to move into the guest bedroom. The third time he hurled himself from his bed and put a big gash in his forehead, he decided to come to the sleep center.
Charlie has REM behavior disorder, or RBD. For each violent episode, he could recall the dream that he was having that prompted him to action. It is very common, and was true in this case, that when the person with RBD attacks his bed partner, usually he is dreaming that he is saving his spouse. In the dream, it is the bad guy he is hitting. " To read more CLICK HERE
For more non-motor information click here
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Three Subjects People Avoid Talking About
Relationships -- Sex -- Intimacy
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Relationships, Sex and Intimacy
"Intimacy and sex are hard topics to talk about. Many times people are hesitant or embarrassed to talk about these problems. Often movement problems and medications become the focus during medical visits and intimacy and sexual function become a lower priority. In addition, some medical providers may be reluctant to discuss problems associated with intimacy and patients may feel there is little time left during their appointment and feel too rushed to engage their provider about their changing sexual function. However, sexual function and the importance of intimacy in one’s life is one of the more important priorities for many patients at all stages of PD." From the Northwest Parkinson's Foundation article
This informative article helps to provide information you need to talk about these issues rather than avoiding the problem.
CLICK HERE
Relationships and Intimacy
"Living and coping with Parkinson’s and the evolving role of the partner as caregiver can impact your relationship in both positive and negative ways. Understanding how Parkinson’s affects intimacy, sexual function and desire as well as relationships is the first step in discussing the complicated and many times avoided subject of sexual function and intimacy." CLICK HERE
For more non-motor information click here
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Be Safe!
Be Careful!
Be Informed!
Be On Guard!
Many Parkinson patients and their caregivers utilize the internet for information, education, social networking and sending email. All too often identity theft can happen quickly.
Onguardonline.gov has practical information from the federal government and the technology industry to help you to be on guard against Internet fraud, secure your computer, and protect your personal information.
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| Are you looking for the perfect gift to give ... |
- Birthday
- Wedding Anniversary
- Mother's Day
- Father's Day
- Valentine's Day
- Christmas
- Kwanzaa
- Hanukkah/Chanukah
- or any holiday, celebration, or special occasion
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Gift Giving can sometimes be a stressful challenge. Often we purchase items without fully knowing whether the recipient will use them. Simplify your gift giving with a charitable gift of a donation to the Columbia Parkinson's Support Group in "Memory Of" or "In Honor Of" or "In Support Of" the Parkinson's community. We will send an appropriate gift card acknowledging your donation.
Your gift of a donation will allow us to continue with our mission of providing Support - Information - Education - and Awareness about Parkinson's disease for Parkinson's patients, their caregivers, and others who have an interest in Parkinson's.
How do I give a donation gift?
What do you use my donations for?
[Note: This page may be slow to load due to videos]
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| Please take a moment to remember our military troops overseas |
"LETS SAY THANKS IN SUPPORT OF OUR TROOPS"
You can send a FREE printed postcard to US Military Personnel in 5 minutes
"The LETS SAY THANKS IN SUPPORT OF OUR TROOPS Xerox web site gives you an opportunity to send a FREE printed postcard to US military personnel stationed overseas showing your support and appreciation for their service to our country. The cooperation and generosity of multiple organizations has made it possible to send the millions of postcard messages submitted through this web site. Xerox has partnered with Give2TheTroops, the Boys and Girls Clubs, print shops and corporations that have all greatly contributed to the success of Let’s Say Thanks."
There are three "easy" steps!
- Select one of the "amazing" postcards designed by children
- Personalize your card by selecting a message already available or you can create your own message
- Hit "Send" - How easy is that!
You can send more than one FREE postcard!
Click Here or Click on the image below to go to the web site
Information provided by "Lets Say Thanks In Support Of Our Troops"
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"GIVE 2 THE TROOPS"
You can send a Care Package to our military troops overseas
Click Here or Click on the image above to go to the web site
"Since December 2002, GIVE 2 THE TROOPS has supported approximately ONE MILLION deployed U.S. troops with loving care packages and letters from all over the nation. This was made possible only with the help of tens of thousands of generous and patriotic friends in the U.S. and abroad. To date, we've sent more than 115,000 enormous boxes (APPROXIMATELY 70 LBS EACH) and more than 30 million letters and cards from caring citizens. This is the least we can do to show our troops how much we care about them. Our troops need to know that we support and appreciate the sacrifices they make for us, our families, and our future. This is about giving back to those who give all™"
Information provided by "Give 2 The Troops"
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Answers to "Test Your Knowledge About Parkinson's" - All of the questions are "False"
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WHAT YOU CAN DO FOR PARKINSON'S DISEASE
READ and RESEARCH for information about PD
ATTEND PD support group meetings / events / seminars / classes / lectures
VOLUNTEER to help your PD support group help you and others
LEARN about lifestyle decisions you will need to make
MAKE SURE your legal and medical documents are up-to-date
ASK QUESTIONS - ASK QUESTIONS - ASK QUESTIONS!
Return Back To The Test
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Do you have anything that you would like to recommend for us to put on our website?
If so, please Contact Us and give us your recommendations, and we may include them on our website.
Wonder what other webpages of information that we have on our website? Visit our SITEMAP |
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